Our Little Princey Fellow - Collin Cureageous

Friday, January 27, 2012

2012-01-27T14:55:00.002-05:00

This past Monday, I made a clinic appointment for Collin because he had been fighting a cold for a few weeks, and for almost a week he had drainage from his eyes. He was given antibiotic eye drops (which he hates!) Yesterday afternoon, he woke up from a nap, shivering and kind of wimpering. He felt warm, so I took his temperature, which was 101.2. I called the oncology office, and was told to bring him to the clinic. Blood was taken to check his counts and for cultures, and one of the oncologists checked him over. The labwork showed his white blood cell count to be elevated which means that he's fighting something. Thankfully we were allowed to come home last night. The fever stayed around 100 overnight and this morning. The cultures haven't grown, so I think he's just fighting a cold. Hopefully his fever will go down soon; I don't want anything to interfere with his surgery next week.

Plans are falling into place for Collin's upcoming treatment. He will have the surgery to insert the ommaya reservoir into his head next Wednesday, February 1. We'll have to be at the hospital very early, and there is a chance that he'll have to stay overnight after the surgery. Bill found an animated video explanation of what an ommaya reservoir is; it can be seen here.

Hopefully the procedure will go smoothly, without complications. I'm sad that his little body will have yet another scar, and that his nice round head will now have a permanent bump in it. The ommaya reservoir isn't typically removed, so Collin will always have it. Hopefully it will be less noticeable once his hair is covering it.

Saturday, January 21, 2012

2012-01-21T11:26:00.000-05:00

Monday afternoon we headed to New York City for Collin's appointments at MSKCC Tuesday. Since Neya had no school Monday and we planned to come home Tuesday after the appointment, we brought her along this time so she could see where Collin would be going for treatment. We also told her we'd take her to FAO Scwartz so we could have a little fun while we were there. We checked into the Ronald McDonald House around 5:30 that evening. It was our first experience staying at a Ronald McDonald House. After we checked in, we were shown to our room, and then given a tour. The staff were extremely friendly and caring, and they really do so much to try to make your stay as comfortable as possible. There are kitchens where you can keep some of your own food in refrigerators, freezers, and pantries, and the kitchens are stocked with utensils so you can cook your own meals if you wish. There is also a community dining room where volunteers come in around five times a week to serve dinner to the families. There is a library, where some different classes are offered. There is a playroom with toys, books, art supplies, video games, computers, etc. There is a patio where during the summer they have cookouts. They have teachers available to help the kids and siblings staying there. People have to travel from all over to different hospitals in New York City for care, so it's nice they have a place to stay while they are there.

Unfortunately, I'm not overly fond of traveling, which combined with my anxiety about why we were there, had me feeling more upset about the negatives than thankful for the positives, so I was in a mood for the whole trip that I had a hard time pulling myself out of. Our room, although large, had two single beds and a fold out sofa, and was like a bare bones dorm room, so it lacked the comforts of home, or even a hotel room. You are expected to clean the room and launder the linens before you leave, which I have no problem doing, but it was difficult to find the time in our schedule to do so since we were there for such a short time. Navigating through the city, train station, etc. with two kids, a stroller, and suitcases, and dealing with the cold and rain while doing so wasn't very fun. I am so familiar with Hershey Medical Center, their staff, and how they do things that I know what to expect; being in a different hospital where I don't know my way around so well and am not familiar with the staff or their procedures was stressful to me. I'm sure I'll become more familiar and comfortable each time I make the trip, and knowing what to expect will make things easier, but it's not a trip I can do by myself with Collin; I'll definitely need another adult with me. And in the end, we spent such a long day at the hospital Tuesday that we never did get to go the the toy store and have a little fun before we left, which left all of us disappointed.

We had to be at the hospital at 8:30 Tuesday morning, and Collin's MRI was scheduled for 10:30. Of course Collin wasn't able to eat after midnight because of the anesthesia, so we were all very hungry (the rest of us didn't eat breakfast because we didn't want to eat in front of him). He was finished in MRI around 12:45, and after some bloodwork, we were in the waiting room by 1:30 waiting for the doctor to meet with us. Unfortunately, she didn't meet with us until 4:45, so we spent all that time sitting around doing nothing. We didn't leave the hospital until around 6:00 pm. Then we caught a cab to Penn Station, took a train back to Edison, and drove the two hours home. We finally got home about 11:30 Tuesday night. Needless to say, it was an exhausting two days.

I don't remember if I've explained this treatment before, so forgive me if I'm repeating myself. Researchers have found that Collin's cancer, medulloblastoma, has a certain protein, called GD2, on it's cells. There is an antibody called 3F8 that attaches to the GD2 protein. They take the 3F8 antibody and combine it with radioactive iodine. Then it is injected into the omaya reservoir, which is like a port in Collin's head. The radioactive antibody travels through Collin's cerebral spinal fluid, attaches to any cancer cells it encounters, and then delivers the radioactive iodine to the cell, radiating and killing it. The radiation only penetrates about one millimeter, which is why Collin had to be at "minimal residual disease" for it to work (it wouldn't be able to completely radiate a tumor larger than 1 millimeter in size). The round of chemo in November and the Gamma Knife procedure in December accomplished this, and the metronomic (daily) therapy that Collin has been taking at home has kept anything from growing back so far. The 3F8 treatment has been used on kids with neuroblastoma for about twenty years; it has been used on medulloblastoma for about five years. The doctor said there has only been one other child that she has used this treatment on who had the same subtype of disease as Collin (similar age at diagnosis, metastasis to the spine, etc.) The good news is that two to three years later, that little girl is still alive and doing well.

It looks like Collin will start the 3F8 treatment at MSKCC on February 28. We are hoping the omaya reservoir can be placed in the very beginning of February; thankfully that can be done in Hershey by Collin's neurosurgeon. Then he will have to have a specific kind of CSF flow study at MSKCC to make sure that his cerebral spinal fluid circulates through his brain and spine well enough to distribute the antibody. I think we will have to stay in NYC for a few days when this test is done. Then we will travel to NYC on Monday February 27, and spend a long day at the hospital on Tuesday February 28 for the first injection. We will have to remain in the city for a few days after the first injection, because they do PET scans and other tests at certain intervals for 48 hours after the first injection. Hopefully we will be home in time for Neya's birthday on March 2. Then we will travel to NYC on Mondays, spend Tuesdays at the hospital, and hopefully come home on Wednesday every week of March. Then about a month later we will have to return to NYC for another MRI.

This is a lot of traveling, and I know it will be exhausting. During this time, Collin will be taking a break from his physical, occupational, and speech therapy so that we can rest for the few days at home between each trip. My parents will fly in and stay with us for the first two weeks of treatment; that way Bill and I can take Collin for his first injection, and they can stay with Neya so that we keep her schedule and routine as normal as possible. Then the following week, my parents will go to NYC with me and Collin, so Bill can stay home with Neya and work. For weeks three and four, my friend's dad will go with me and Collin so that Bill can stay home with Neya and work, and then for treatment number five, Bill, Neya, me and Collin will go to NYC together.

While Collin is having this 3F8 treatment, his tumor tissue for his brain surgery in 2010 can be tested for another protein which has been found on only some medulloblastoma tumors. If his tumor has that particular protein, there is another, similar treatment at MSKCC that he can do after this treatment. It is our hope that one or both of these treatments will allow us to at the very least postpone complete brain and spine radiation; ideally these treatments would eliminate the need for cranio-spinal radiation completely. This week has been hard for me; besides our traveling and trying to work out the logistics of regular trips to NYC, there has been some more losses and hard news for other kids I have come to know. Please pray for Clinton's family as they learn to cope with his loss (http://www.caringbridge.org/visit/clintonmilliken), and for sweet Bree who's scans this week show what is probable recurrence/disease spread (http://www.caringbridge.org/visit/breehaga). Also, please pray for little Grace, the two year old niece of a close friend of mine who was recently diagnosed with an aggressive form of leukemia. I hate cancer.

Friday, January 13, 2012

2012-01-13T22:41:00.001-05:00

Collin has been feeling fine since his Gamma Knife procedure on December 30. The pin holes have healed, and the stitch in the right side of his forehead is dissolving. He's also been tolerating his daily chemo and other meds very well, with no major side effects. His hair is starting to grow back, so his head is covered in downy fuzz. I envy his energy levels; he's like a little Energizer bunny who just keeps going and going, no matter what is thrown at him treatment-wise, and he does it all with a smile on his face!

The tumor board at Memorial Sloan-Kettering Cancer Center in NYC had approved Collin for their 3F8 treatment after the MRI on December 9 showed the new nodule was gone. He would have to be four weeks past the Gamma Knife procedure to start the treatment, and his oncologist didn't want to stop his maintenance chemo until he had been on it for six weeks. Both of these time periods are finished on January 30. Collin needs to be off chemo for 21 days before starting the 3F8 treatment, which means he could start towards the end of February. There are some other things that have to be taken care of before he can start the treatment: placement of the omaya reservoir, a CSF (cerebral spinal fluid) flow study, and determining insurance coverage. The omaya reservoir will be surgically placed by Collin's neurosurgeon at PS Hershey Children's Hospital, but before that is done we have to meet with another doctor at MSKCC. We found out today that she can see Collin on the 17th, and he will have another MRI of his brain and spine that morning before we meet with the doctor. So, we'll head to NYC sometime Monday after Collin's clinic appointment, and we'll be at MSKCC bright and early Tuesday morning. I'll update as soon as I can after our little trip!

I leave you with wishes for a happy, HEALTHY new year, and a request for continued prayers for all of the little warriors fighting cancer, including Cole (Fight Back! for Cole) who has been having a rough few weeks, Emily (www.EmilyHubbel.com) whose parents received very difficult news recently, and Talon, a sweet baby boy battling Medullobastoma who has come home on hospice, as well as the countless families who've lost their precious children to this beast and the survivors who have been left with lifelong physical and neurological challenges from their cancer treatments. Let's continue to raise awareness in 2012 so childhood cancer research can get more of the funding it desperately needs, because kids get cancer too!

Gamma Knife

2011-12-30T20:11:00.002-05:00

We got to the hospital at 6:30 this morning for Collin's Gamma Knife procedure. He was checked in, we signed another consent form, and by 7:15 we were down in radiology for his MRI. Collin was very content watching a favorite movie on the iPad until he was put to sleep. The anesthesiologist was very kind and listened to my input about what works best for putting Collin to sleep. Collin fights the mask, so we've found that taking the mask off and just holding the hose under his nose works better. The gas has a distinct smell, so this time he used some "laughing gas" first to relax Collin, and then switched to the other gas when the smell wouldn't bother Collin. After that, the mask can be put on without traumatizing him.

Once he was asleep, his port was accessed so the Propofol (anesthetic) could be administered, he had a quick high resolution MRI of his brain, and then they attached a frame to Collin's head that was held in place by four pins. Then he was brought back up to the Gamma Knife clinic, where they put a clear helmet over the frame, and used it to take measurements needed to program the Gamma Knife machine. After about 15 minutes of entering and verifying data in the Gamma Knife machine, Collin was wheeled into the Gamma Knife room, which is completely encased in two feet of lead. They loaded Collin into the machine, and the frame around his head was inserted into a large metal helmet with holes in it. There was a camera positioned on the machine that allowed the procedure to be monitored in the room outside the Gamma Knife room. Once everything was exactly in place, we all left the room and the lead door was closed.

The physicist, radiation oncologist, anesthesiologist, and nurse watched and monitored the procedure on computers outside the lead room. The procedure itself only took about 15 minutes. 201 beams of radiation were put through Collin's head at all different angles so they intersected in the area where the tumor was, to hopefully destroy any microscopic cancer cells that may have been left in the tumor bed. When we had the consultation with the neurosurgeon before Christmas, he said that if they saw any other new tumors on the MRI that they would radiate them too. Thankfully, no new tumors were seen!

After the Gamma Knife procedure was complete, they took Collin out of the machine, and removed the frame from his head. He has four pin holes in his scalp where the frame was attached that are just covered with Band-Aids. One of the four pins went into his skull, so he had a small amount of CSF leaking out. The neurosurgeon put a dissolvable stitch in place to close the hole, and Collin's head is wrapped in a bandage to keep pressure on the hole. Collin woke up quickly and happily, and was trying to sit up right away. He ate some crackers and drank some juice without throwing up, and we were allowed to bring him home around noon. We have to monitor the CSF leak closely, but he really has no restrictions. Kids will self limit, which means they'll do what they feel like doing (whereas adults tend to do more than they should). Collin doesn't seem to be in any pain, and is eating a late lunch as I type this. If his head wasn't wrapped in a bandage, you'd never know he had anything done this morning!

Thursday, December 29, 2011

2011-12-29T22:18:00.001-05:00

I hope everyone had a Happy Hanukkah and a Merry Christmas! I never did get cards out this year, but that doesn't mean I wasn't thinking of all our friends and family! I'm just constantly behind on things lately, and I don't seem to be able to catch up...

Christmas was a whirlwind for us. Collin had therapy and doctor appointments before and after Christmas, and Bill ended up very sick three days before Christmas with what he thinks was food poisoning. If it wasn't for the help of my parents who were visiting from Houston, things wouldn't have been done in time for Christmas, like wrapping gifts and making Christmas brunch and dinner. By the time Christmas arrived, we were all exhausted. But we had a great day with family and friends! Unfortunately now we're all fighting colds, and I've had a low-grade fever for the last three days, so I'm feeling pretty run down and cruddy. Hopefully we'll all be feeling better very soon!

Collin has his Gamma Knife procedure tomorrow; we have to be at the hospital by 6:30 am. Please pray that everything goes smoothly for Collin. Also, please remember in your prayers all of the families who had to celebrate the holidays missing a child taken by cancer; unfortunately there are too many to count. And please also keep fellow Medullo warriors Talon and Wesley in your prayers, as their journeys have taken heartbreaking and difficult turns.

Wednesday Update

2011-12-21T21:47:00.003-05:00

Collin's oncologist called today with an update. She heard from Dr. Dunkel at MSKCC, who let her know that their tumor board reviewed Collin's case today, and agreed that his most recent MRI shows no visible evidence of disease, so he can do their 3F8 treatment. However, Collin's oncologist doesn't want to take him off the metronomic therapy too soon and give the cancer a chance to start growing again since he's already been off chemo for a few weeks. She recommends continuing the metronomic therapy for six weeks before taking a break, and in the meantime we can work on various preparations for the treatment at MSKCC, such as submitting a treatment plan for insurance approval (hopefully), and arranging for the surgery to have the Ommaya Reservoir placed.

We also found out that Collin's Gamma Knife procedure is now postponed until Friday December 30. The Gamma Knife machine was serviced today, and needed a new part which has to be shipped from Sweden. It will be installed on Monday, and they don't want Collin to be the first one to use the machine after it's fixed in case they run into other problems with it. Since Collin has to be anesthetized for the procedure, they don't want to have to stop in the middle of it because of a problem with the machine and have to reschedule him for a different day and re-anesthetize him. So they rearranged their schedule so that they can do a few adults before Collin to make sure the machine has no problems.

I picked up the Thalidomide from the pharmacy today. A 28 day supply cost nearly $4000. Thanks to the Four Diamonds Fund, I only had to pay $20. We are SO grateful for the Four Diamonds Fund!!

Wednesday, December 21, 2011

2011-12-21T09:44:00.001-05:00

Yesterday we met with the neurosurgeon who will be part of the team that will perform the Gamma Knife procedure on Collin. The procedure will be done on Tuesday December 27. It is an outpatient procedure, so Collin will be home that night, but it will be a very long day (starting at 6:30 am).

Collin was also seen by his oncologist yesterday. She doesn't want to have him off any kind of treatment for too long, so she started him on the oral metronomic therapy last night. It consists of five different drugs, four of which will be given at home. Two are chemo drugs which he has had before, Etoposide and Cytoxan, which will be given on alternating 21-day cycles (he started back on Etoposide last night). Since he has already had multiple doses of them during past cycles of chemo, he can only take these drugs for six months because at least one of them has a potential risk of Leukemia as a secondary cancer. The other two drugs that will be given at home are drugs originally developed for other purposes that happen to have anti-cancer effects. One is Celebrex, a pain reliever used for arthritis. The other is Thalidomide, originally developed to prevent morning sickness. (Yes, the drug that caused birth deffects in the 60's is one more dangerous chemical I will give my son in hope that it will cure his cancer. As with the Accutane earlier this year, I had to sign papers saying that I understand the dangers of this drug, and must wear gloves while giving it to Collin. It's pretty scary to think about really, on many levels). The fifth drug is Avastin, which is used to treat various types of cancer. It is a type of medication called antiangiogenic agents, which work by stopping the formation of blood vessels that bring oxygen and nutrients to tumors. This may slow the growth and spread of tumors. The Avastin will be given intravenously every few weeks; one of it's possible side effects is that it can slow surgery and wound healing, so the timing of the infusion will be planned around any surgical procedures. (If Collin is accepted into the 3F8 trial at MSKCC, he will need to have an Ommaya Reservoir, kind of like a mediport in his head, placed by a neurosurgeon, so the Avastin wouldn't be given before that so there are no problems with healing from the surgical procedure). Along with these five drugs in the metronomic protocol, Collin will have to go back on Prevacid to prevent heartburn caused by the Celebrex, and Miralax to prevent constipation caused by Thalidomide.

MSKCC's tumor board will review Collin's case today and decide whether they will allow him into their study. Hopefully we will know their decision in the next few days.

Sunday, December 18, 2011...Collin turns 3!!!

2011-12-18T23:19:00.004-05:00

Today marks three years since I gave birth to the sweetest little boy, who stole my heart and has become my hero. Thank God he is is so strong; he has now been fighting cancer for over half of his life. We are blessed to be able to celebrate another birthday with him!

We celebrated the day with a small family party. Collin had a lot of fun, and all day he found immense joy in everything he did, whether it was opening a card or a gift, blowing out his candle, or eating cake. He spent the day smiling, clapping, and cheering "Yay!" everytime something made him happy. It was a perfect day!

Friday evening we received a phone call from Collin's oncologist to update us on his treatment plan. This Tuesday Collin has a consult with the neurosurgeon who will perform the Gamma Knife procedure. Hopefully then we will know when the procedure will take place. After that appointment, he will be seen in the clinic and we will get the maintenance chemo and other medicine that will be part of his metronomic therapy. His oncologist doesn't want him to go for too long without anything keeping the cancer in check. She has sent his most recent MRI to the doctors at MSKCC, who will review it Wednesday when their tumor board meets. Then as long as they agree to let him into the study, arrangements will be made for the test and procedure he needs to have to start the trial. It seems unlikely that he would start any treatment at MSKCC before the later part of January.

The treatment at MSKCC brings with it other concerns besides whether it will help eradicate Collin's cancer. We will need to travel quite a distance, and stay overnight for one or more nights, every week for a while. This involves costs for travel, lodging, and meals. It is possible that some or all of the treatment may not be covered by insurance, and even if it is, we face higher deductibles, copays, and out of network costs that will add up very quickly. Collin has already had over $1 million worth of medical care; thankfully between our insurance and the Four Diamonds Fund, we have not had to pay anything up to this point. But that will all change the minute Collin starts receiving treatment at a different hospital. Because of this, friends have set up the Fund for the Cure and Care of Collin Kratzer. If you would like to contribute to this fund, you can click on the PayPal button at the top of this blog, or send a check to The FCC of Collin Kratzer, C/O Mary Rebuck, 262 Lincoln Avenue, Harrisburg, PA , 17111. There will also be fundraising efforts in the new year. Any help and support you are able to give is very much appreciated!

Friday, December 9, 2011

2011-12-10T01:11:00.002-05:00

Collin's MRI went smoothly today, and best of all, it showed NO RESIDUAL DISEASE!!!!!! This means the one round of chemo disolved the nodule, and there are no tumors that can be seen at this time! This result was even better than what I dared hope for. Of course we are ecstatic, and I couldn't be happier if I won a multi-million dollar lottery. But the fight is far from over.

Chances are, there wasn't just one rogue cell that grew into the nodule found in October, so we have no guarantee that there aren't more cells waiting to grow. To decrease the chances of anything growing back in the area where the nodule grew, we are still looking at Gamma Knifing that area. We met with the radiation oncologist this afternoon to discuss the procedure, and hopefully next week we will meet with the neurosurgeon who would perform the procedure. They also need to measure Collin's head to make sure it is large enough to fit the machine. As long as everything goes well, the procedure would be scheduled as soon as possible.

In the meantime, Collin's oncologist will update Dr. Dunkel at MSKCC and start getting things rolling for the 3F8 antibody treatment. Hopefully that can be done early in the New Year. Once that is completed, we hope to do metronomic, or maintenance therapy using some chemo and some other medications that work differently on cancer cells. The metronomic therapy can be done for a year or more. Statistically, the best chance of a complete "cure" requires craniospinal radiation, however those statistics don't factor in these newer treatment options. Ideally perhaps these treatment options could mean that Collin will never need craniospinal radiation; but at the very least they will hopefully allow us to put it off a little longer and give Collin's brain a little more time to grow and develop normally.

This evening we celebrated by going out for dinner and then painting some Christmas ornaments. Thank you so very much for the prayers, love, and support today!

Monday, December 5, 2011

2011-12-05T14:21:00.004-05:00

Last Wednesday, Collin's ANC was up to 4,000 because of the GCSF, so after he had a platelet transfusion early that afternoon, we were allowed to go home. He is on IV antibiotics through December 10, which means he came home with his port still accessed. Wednesday evening, we received the large pharmacy delivery of the antibiotics, saline and heparin syringes, and other supplies like a sharps container, dressing change kits, and more needles for the mediport. We also had a visit that evening from a home nurse who set up Collin's case file and made sure I knew how to administer the IV antibiotics. The needle that accesses the mediport must be changed every seven days, so the nurse came back Friday morning to change the needle and draw blood for labwork. Friday night when I hooked up the antibiotic, I had quite a bit of difficulty flushing saline through the IV line, and then the antibiotic wouldn't infuse. So the nurse came back around midnight and changed the needle in the port again. As much as I hated the broviac line when Collin first had it, I found myself wishing we still had it so we could avoid sticking needles in his port so much. Even though we use Lidocaine cream to numb the area first, Collin has figured out what we're doing, and of course he doesn't like it. He's still very good about it, way better than I would be, but I hate having to see him go through such things.

The IV antibiotics are given twice a day, and each infusion takes 60-90 minutes. The IV Cipro is in a small balloon which is inside a pressurized bulb that gets hooked up to the IV line that is connected to the mediport in Collin's chest. The pressure in the bulb slowly pushes the medication out of the balloon and through the IV line. It's a neat system, it's easy to do and is pretty portable, so I can take the morning dose along to therapy appointments if necessary. The evening dose is administered after Collin is asleep, but luckily it can be given without having to wake him up.

This is what the bulb looks like before it is used; I started with 21 of these in my fridge:

This is what it looks like when the infusion is complete:

This is what I came up with so Collin could be mobile during the infusion without me having to follow him around holding the bulb for an hour or more.

Collin is always clingy for the first few days back at home, probably for a variety of reasons: he may not feel too great, he's tired, he's had a change in environment, and he's had my undivided attention 24/7 while in the hospital. I always have lots of things to do when we get home: unpack, catch up on laundry, housecleaning, coordinating any new appointments we need to add to the calendar, etc. It makes for some stressful days because I just want to get things done, and Collin just wants constant attention. I know time with him and the rest of the family is the most important thing, but I'm much calmer and function better if I feel like I have things in order.

By Saturday I felt like I had accomplished a lot, so we spent the day putting up the Christmas tree, and Sunday we put together our latest Christmas LEGO set. Now I feel like I'm caught up on the most pressing things on my list, and I can try to tackle other things as I get the chance. Collin seems to be feeling better over the last two days, and is eating a bit more as well. Friday's labwork showed his ANC to be back down at 700 since the GCSF was stopped, so he's not leaving the house unless it's to go to an appointment. He has therapy tomorrow, and an MRI Friday morning. Scanxiety has set in, and I am very nervous. Friday afternoon we will be meeting with the oncologist, a neurosurgeon and a radiation therapist to review the MRI results and figure out what comes next. Please pray that the chemo has at least shrunk the new nodule that was found on October 26, and that we make the right decisions about what the next step will be.

Tuesday, November 29, 2011

2011-11-29T12:09:00.000-05:00

I woke up this morning to find a gift from our nurse. It was a copy of Collin's labwork, and it showed his ANC is 1,215 today!! This means his immune system is coming back up. He has had no more fevers, his repeat blood cultures are negative, and his energy has improved. He has a little more interest in eating, but since the chemo kills off taste buds, nothing has much taste. The things that he will eat the most of are sausage patties, doritos, etc. because their flavors are more bold.

We just saw the doctor, and as long as Collin's ANC is at least 1,500 tomorrow, we will be able to go home! He will still need IV antibiotics for a week or two, but the nurses will teach me how to give them at home through his mediport. When Collin still had his broviac line I had to give him IV antibiotics at home more than once, so this won't be too different. It will be so nice to get home! Hopefully we can get the Christmas tree up next weekend!

Sunday Update

2011-11-27T13:55:00.001-05:00

We just saw the doctor, and learned that the bacteria causing Collin's infection is indeed e coli. E coli is normally present in the lower intestine, but the chemo kills the functional barrier that normally prevents the bacteria from getting into the bloodstream where it doesn't belong. Luckily we caught the infection early, and the bacteria usually responds well to antibiotics. Collin will be able to go home once his counts come up, the cultures come back negative, and if the antibiotic that works is one that can be given intravenously at home.

Earlier today Collin and Neya were playing and getting kind of rowdy, and Collin was getting a bit sweaty. The tegaderm dressing that was keeping his IV access to his mediport in place came off, and the needle came out of the port. So we had to numb the area for a bit, and then stick his port for the fourth time this week. As Neya watched the procedure, she said, "I would be screaming if it was me!" Collin cried a little, but she couldn't believe how calm he was. I have to admit, if it were me, I'm not so sure I wouldn't be screaming as well. Once again I'm in awe of Collin's bravery!!

Sunday, November 27, 2011

2011-11-27T09:58:00.001-05:00

Collin was discharged from the hospital last Sunday, November 20 after a short stay for chemo. Thankfully it was a quick, uneventful stay, and he tolerated the chemo very well. Most of our week was spent at home, as he only had one therapy appointment on Wednesday. We had a great Thanksgiving at home on Thursday with Bill's family and some close friends.

On Friday we had a 9:00 clinic appointment for a doctor visit and bloodwork. The bloodwork showed that Collin's ANC was 0, which means he is neutropenic and has no immune system. It also showed his hemoglobin and hematocrit had dropped, so the doctor ordered a blood transfusion. Everything went smoothly, but we spent over seven hours in the clinic, so it was a long day.

A little after 6:00 that evening, Collin felt warm to me, so I took his temperature. It was 100.3. In an oncology patient, a fever is the first sign of an infection which can be very dangerous for someone with no immune sysytem, so we can't give Tylenol and hope it goes away. We have to watch it carefully and call the doctor if it is 100.5 for four hours, or if it reaches 101. We checked his temperature about every hour, and watched it creep up to 100.4, then 100.5, and finally 101.3. I called the hospital, spoke to the doctor, and was told to bring him directly to the pediatric oncology unit at the hospital. He was admitted, blood cultures were drawn to see if there was an infection brewing, and he was started on a broad spectrum antibiotic.

Yesterday afternoon we found out that the cultures had started to grow, which means Collin does indeed have an infection. The bacteria that is growing is called gram negative bacteria, which can be very serious. Some examples of gram negative bacteria are e-coli, salmonella, shigella, pseudomonas, and legionella. We won't know what specific bacteria he has until the cultures grow more. Usually someone with gram negative bacteria is pretty sick, so it's amazing that Collin is feeling as well as he is (he was much sicker when he had a gram negative infection last year). He doesn't have much of an appetite and his energy level is lower, but his fever is gone, and he's not throwing up. Along with the broad spectrum antibiotic, he is now on a more specific antibiotic that treats gram negative infections, and once we know for sure what the exact bacteria is, he could be given yet another antibiotic. He'll have to be on antibiotics for ten to fourteen days, which means we'll be in the hospital for a bit longer than we hoped. Once his bloodcounts start coming up, and the blood cultures are finally negative, hopefully he can finish the antibiotics at home.

As always, thank you so very much for your prayers and well wishes-they mean a lot to us!

Saturday, November 19, 2011

2011-11-19T23:40:00.001-05:00

This past week has been a busy one. On Monday we had to be at the hospital bright and early for Collin's mediport to be replaced. These procedures are getting harder as he is getting older, because he's more aware of where he is and what is being done to him, and he is able to voice his displeasure. Once we got to the same day surgical unit and I got him changed into the hospital gown, he screamed and cried "I want to go home Mom, I want to go home!" It was so hard not to just scoop him up and run out of there. I held him and tried to soothe him, and eventually he calmed down. When they were ready for him in the OR, I walked him there and kept my arms around him as the anesthesiologist tried putting the mask over his face. He always fights the mask, crying and trying to push it away. For the MRI on October 26, when the anesthesiologist saw him fight the mask, she took the mask off, and just held the hose under Collin's nose, which worked well. So in the OR I asked them to take the mask off, and I held the hose under his nose. He stopped crying, and in a few short minutes, he was drowsy enough that I could lay him down, and then we put the mask back on. Once he was asleep, I kissed him and went to wait. After about an hour and a half the surgery was done and they called me down to the PACU where Collin was already waking up. We moved to recovery, and eventually were released. This time the mediport is in the middle of his chest, right above where the broviac was. So now he'll have two more scars on his chest. When we finally got home later that afternoon, I was exhausted. Spending the day at the hospital like that, being under some amount of stress (even if I didn't realize it in the moment), and trying to keep an active toddler happy and entertained is very draining!

Tuesday morning Collin had speech and occupational therapy. His OT knows that he loves Mr. Potato Head, and she gave him a Christmas Mr. Potato Head. Collin didn't let that Mr. Potato Head out of arms reach all week! The first day, he carried it around saying, "I made this" over and over. He has insisted on taking it everywhere with him, and would get very angry every time the feet fell off, so on Thursday night I glued all the parts on so they won't get lost.

Wednesday we took Collin to the barber shop and had his head shaved. Of course I cried, but Collin just sat so bravely and didn't make a peep. His head is nice and round, and he still looks really cute bald.

Thursday I spent the day running in all different directions. I cleaned the house, got caught up on laundry, went to school to have lunch with Neya and observe her class, and packed for our weekend at the hospital. Thursday night was Collin's last dose of oral chemo in this round. Thankfully he tolerated the ten days of chemo very well, and didn't throw up once.

Friday morning I got Neya on the school bus and then Collin and I headed to the hospital. His first appointment was another hearing test. This time the audiologist was able to get better participation from Collin since he has made so much progress in speech therapy over the last few months. He could follow directions, point to pictures appropriately, drop pegs in a bucket on cue, etc. However, the results indicate some significant high frequency hearing loss in his right ear. He had no response to the high frequency sounds that were played in his headphones, sounds that I could hear sitting next to him. He also seems now to have some high frequency loss in his left ear, although it is to a lesser degree than his right ear. At this point the hearing loss in his left ear is not enough to affect his learning speech, but the audiologist wants to keep close tabs on Collin and will see him again in December. The audiologist said she would delay fitting him for hearing aids since he's dealing with so much right now, but I'm guessing that sometime in the next six months he will get them.

After his hearing test we continued on to the clinic, where Collin was examined by Dr. Comito. We talked a little more about the treatment plan; Collin's next MRI will be on December 9, and after that we will meet with Dr. Comito, a neurosurgeon, and a radiation therapist who will discuss the Gamma Knife procedure and start talking to us about radiation. Dr. Comito has only had one other patient relapse after being treated using the Head Start protocol that Collin was treated under. I find that very worrisome, because to me that says that Collin's cancer is very aggressive. She has told me however that that one relapse is still doing well two years after the fact. I know she doesn't want me to lose hope, but the fear is unbearable some days.

After talking with Dr. Comito, Collin's new mediport was accessed by one of the nurses, and then we had a leisurely lunch while we waited for the room to be ready. Bill spent the morning steam cleaning our carpets at home so everything is clean for Collin, and then came to the hospital and helped get our stuff up to the room. Collin was started on IV fluids for a few hours to hydrate him well. Then he was given anti-nausea meds, and then the Cytoxan chemo ran from 7-8 pm. The rescue agent, Mesna, ran for the next 12 hours, and he was given lasix as well to help his body clear the chemo, which meant a busy night of changing diapers (and pjs and bed linens when the diaper leaks).

The IV hydration continued for the 12 hours following the Mesna. We got Collin out of the room for a while this afternoon; he was able to walk to the playroom, which was exciting because he could never do that before. I can't figure out what he remembers from his hospital stays last year. He keeps looking down his shirt at the IV lines hooked up to his mediport, and of course doesn't understand when I have to keep him from doing certain things like getting out of bed on the side opposite the IV pole because I don't want him to yank the lines out of his chest. We have managed to keep him fairly entertained with the help of Godparents and Grandparents. He has seemed to tolerate the chemo very well so far, has eaten here and there, and hasn't been vomiting at all. Tonight the chemo was run again on the same schedule as last night, and we should hopefully be able to go home tomorrow afternoon. Both last night and tonight Collin tearfully told me he wanted to go home, and it breaks my heart. Thankfully this stay is short, but there is a likely chance we may be back by the end of the week for a fever. We will have to give the GCSF shots again at home to boost his white blood cell count, and he will most likely need a platelet transfusion at the clinic around the middle of the week.

Sunday, November 13, 2011

2011-11-13T22:38:00.003-05:00

On November 13, 2010, one year ago today, Collin was discharged from the hospital. As we headed out of our room and made our way down the hall, the nurses threw confetti all over Collin and applauded for him. He had made it through brain surgery, five rounds of chemo, a round of high dose chemo, a stem cell rescue, and veno-occlusive disease. He had survived horrible things I never could have imagined before being thrust into the world of childhood cancer. I felt on top of the world that day we took him home-it was one of the happiest days of my life! Now, a year later, just as I started to let go of some of the nagging fear that is a constant companion in my life, we are having to start the fight all over again. It's so unfair. As I put on the gloves and gave Collin his first dose of chemo Tuesday night, I felt sick to my stomach. But Collin just opened his mouth and took it, with no fussing, no complaining. If he can keep fighting, so can I.

Tomorrow morning we have to be at the hospital at 6:45 am so Collin can receive a new mediport to replace the one that was taken out on October 14. On Tuesday he has speech and occupational therapies. On Wednesday or Thursday we will take him to the barber and have his head shaved to spare him the itchiness of his hair falling out from the chemo. I don't know how he will handle that; he likes to feel the wind blow his hair, and he likes me to blow the hairdryer on his hair when I'm using it on mine. I'm dreading it; I know it will grow back, but I still like to feel his soft hair every day even though it's been back for almost a year. And then on Friday morning we will head to the hospital where he will have another hearing test, be seen in the clinic, and then be admitted back to 7 West for 3-4 days to get the chemo Cytoxan. A few days after that, his immune system will crash, I won't be able to take him anywhere except his medical and therapy appointments, and he'll probably be admitted back to the hospital for another short stay with a neutropenic fever. Normal life is again on hold while we fight this beast with all we have.

The last two weekends have been so much fun! We visited our THON organization on Penn State's Altoona campus last weekend. We had a blast and were spoiled by many wonderful people, but best of all was seeing Neya and Collin have fun just being kids. This past Friday we held a fundraiser in Collin's honor to benefit the Four Diamonds Fund, and we raised $3700! And today we were on Penn State's Main Campus for the THON Family Carnival. I will go into more detail about these great experiences and share pictures in the near future. Right now I am exhausted, and since we have to be at the hospital very early in the morning, I'd better get to bed!

Tuesday, November 8, 2011

2011-11-08T16:56:00.001-05:00

Yesterday we met with the neurosurgeon who resected Collin's original tumor to discuss the options for removing the current tumor. Based on the location of this tumor, he would not recommend trying to remove it surgically because it is just too risky; there is too much brain matter to go through to get to the tumor. Risks include bleeding, hydrocephalus, and permanent vision deficits. However, it is a good candidate for Gamma Knife Radiation, which is a procedure where radiation is used only on the tumor tissue to basically melt it away. The tumor has to be small for Gamma Knife, which this one is. With a Gamma Knife procedure, small lines of low dose radiation would be passed through the tumor at many different angles. The point where these lines intersect (the tumor) would receive a high dose of radiation, but everything else around the tumor receives a very low dose of radiation. There is little to no risk of bleeding, etc.

Last evening, Dr. Comito called to discuss some feedback she had received from Dr. Kieran at Dana Farber Cancer Institute in Boston. After considering all of the input and feedback from some of the top pediatric oncologists and neurosurgeons in the country, we have come up with what feels like a logical plan of treatment.

First, Dr. Comito feels that even though there is only one nodule right now, there is most likely still residual disease that can't be seen yet and so therefore cannot be gamma knifed. In order to attack that and keep it in check, we will start with a round of chemo. Another MRI will be performed in a few weeks to gage the effectiveness of the chemo. If the nodule is smaller or no longer there, that means the cancer is still sensitive to chemo, and we can do a second round to attack it further before doing a Gamma Knife procedure to the tumor bed. If the MRI were to show that the tumor is the same or larger, chemo would be abandoned and we would Gamma Knife the tumor and the immediate area to kill any remaining tumor cells.

The next step would be metronomic, or maintenance, therapy which would combine some chemo along with some anti-angiogenic drugs. Tumors recruit their own private blood supply to obtain oxygen and nourishment for cancer cells. Antiangiogenic drugs cut off this blood supply, which in turn starves the tumors and prevents their growth and spread. This type of therapy can be used for quite some time. The hope is that using this kind of therapy can buy us more time before doing craniospinal radiation. At some point we can do the 3F8 antibody treatment at MSKCC as well; at this moment I cannot remember where in the plan this would take place.

So, tonight Collin will start back on chemo at home. He will receive Temozolomide for five days, and Etoposide for ten days. On Monday November 14, he will have surgery to place another mediport. Then on Friday November 18, he will have a hearing test in the morning, and later that day he will be admitted to the hospital for 3-4 days to receive Cytoxan. He will lose his hair, so we will probably shave his head beforehand so he doesn't have to be all itchy as his hair falls out. His immune system will be knocked out again, so we need to be extrememely careful of germs. He will probably be hospitalized again for a neutropenic fever after finishing the round of chemo. We don't relish being in the fray again, but we do feel better now that there is a plan. We have complete confidence in Dr. Comito; I know she has agonized over these decisions as much as we have. She has consulted with very respected colleagues, and she wants the best possible outcome for Collin.

Friday, November 4, 2011

2011-11-05T00:03:00.000-04:00

We met with Dr. Comito this afternoon to further discuss yesterday's meeting with Dr. Dunkel as well as some other options she wanted to offer us after speaking with some other pediatric oncologists around the country.

As I mentioned in my last update, in order for the various treatment options to have the best chance of success, the first step is to get rid of as much tumor as possible. One way to accomplish this is another resection surgery. There are risks with another brain surgery, and we will be meeting with Collin's neurosurgeon Monday to discuss these risks. Dr. Comito offered us another option to consider, and that is doing another round or two of chemo first. After the first two rounds of chemo last year, most or all of Collin's measurable disease was gone. And as rough as chemo was, Collin's body still handled it fairly well. By doing a round or two of chemo first, there is the chance that it could shrink or kill the current tumor, and then another brain surgery could be avoided. There are risks with chemo as well, and Collin would lose his hair again and probably end up hospitalized with a neutropenic fever at some point, but when we compare how Collin fared with chemo versus how he fared with brain surgery, chemo seems less risky than brain surgery. It is the brain surgery that left him with right sided weakness, the problems with his eyes, the facial paralysis, and the difficulty communicating. Trying chemo first could hopefully eliminate the need for another brain surgery, and also buy us a little more time to put into place the plans and arrangements for radiation.

Radiation is based on the idea of selective cell destruction, and uses energy to destroy cells. There are two different kinds of external beam radiation that can be used on Collin. Traditional radiation uses high-energy radiation, usually from X-rays, to kill cancer cells and shrink tumors. The problem with X-rays is that they're not easy to control. As X-ray enters the body, it gives off a tremendous amount of energy at the point of entry. As long as the tumor is somewhere in the path of the X-ray, it receives some of that radiation. But so does the healthy tissue around it. The X-ray has an entry point and an exit point through the body. Proton beam radiation can cause less collateral damage to surrounding healthy tissue. The proton beams are easier to control than X-rays, and can be set to release their energy at a specific point in the body. The proton beam has an entry point, but since the radiation can be set to stop at the tumor, there is no exit point like there is with X-ray. Radiation would be given daily, under anesthesia, over a number of weeks. Traditional radiation could be done at Hershey Medical Center; proton beam radiation would have to be done at one of the few proton beam centers in the country.

Some of the side effects of radiation to the brain and spine include skin changes, fatigue, nausea, vomiting, hair loss, eating and digestion problems, hormonal imbalances, hearing loss, organ damage, stunted growth of the spine, stroke, IQ and memory deficits, and secondary cancers. Some of the side effects are temporary, and others are permanent or may occur years after radiation treatment. Higher doses of radiation most likely have more severe side effects. Some of the decisions we still have to make are the dose of radiation to give, and in the case of proton beam radiation, where in the country to get it.

We are looking forward to a fun weekend visiting with and getting to know more of our extended Altoona THON family. We certainly need some fun! Monday will be another busy day with therapy, picking up the orthotics for Collin's feet, and meeting with the neurosurgeon.

Thursday, November 3, 2011

2011-11-04T11:16:00.000-04:00

We spent about an hour and a half with Dr. Ira Dunkel at MSKCC today. He agrees with Collin's oncologist, Dr. Melanie Comito, that Collin is still curable. He also agrees however that the best chance to cure disease that has proven to be resistant to chemo is to use non-chemo methods, namely radiation. The best chance of curing the disease using radiation would be to give the highest dose of radiation known to be curative. However, chances are high that this would not leave Collin with a good quality of life. So the dilemma is...which is more important-the highest chance of a cure despite the risk that Collin may be left unable to ever live independently? Or giving radiation at a reduced dose to improve his chances of still being left with a decent quality of life, but at the risk that the reduced dose of radiation alone may not cure him? If we choose the later, how can we "hedge our bets" to improve the chance of a cure as well as preserving quality of life?

Long before the FDA will approve drugs for widespread use, they go through years of testing and clinical trials by researchers and hospitals. Phase I clinical trials solely test the toxicity of a drug. During Phase II trials, while the toxicity is still monitored, the goal is to see benefit from the drug being tested. MSKCC is now conducting a Phase II clinical trial using an antibody that is known to react with the kind of disease Collin has. This clinical trial has been going on for about five years. However, the antibody has been used for twenty-some years in patients with Neuroblastoma, another childhood cancer of the central nervous system, and it is known to be effective.

Antibodies are proteins generally found in the blood that detect and destroy invaders, like bacteria and viruses. There is an antibody named 3F8 that attaches to tumor cells. When radioctive iodine (131I) is attached to the antibody, it is called 131I-3F8. When 131I-3F8 attaches to a tumor, it delivers radiation right to the tumor. To be able to do this, a permanent small plastic tube (called an Ommaya reservoir) would be placed in one of the ventricles of the brain, and through that the antibody would be injected directly into the cerebral spinal fluid (CSF). It would flow through the brain and spine via the CSF, attach to any tumor cells it finds, and deliver the radiation that will hopefully kill the tumor cells once and for all. Before the antibody injections are given, several other medications are given to protect the thyroid gland from radiation, and prevent allergic reaction, fever, and other side effects. The most likely side effects related to the antibody are headache, nausea, vomitting, and fever. Rare but serious side effects include injury to the spinal cord, brain, or muscles; walking problems; pain; tremors; seizures; coma; or death. The antibody injections will be given once a week over a maximum of five weeks. Certain tests will need to be done before, during, and after the study.

The antibody will only attach to tumor cells, not healthy cells, so the radiation that is attached to the antibody will only be released into tumor cells. However, it doesn't penetrate more than about a millimeter. Therefore, in order to give this method the highest chance of success, there are some things that would need to be done first. The new tumor that is present would have to be removed (resected) if possible. After recovery from that surgery, external craniospinal radiation would be administered to shrink any other tumors that may not be visible yet. Then after a four week recovery period following the completion of craniospinal radiation, the antibody therapy would be administered. It's also possible that at some point during or after all of this, Collin could go on more maintenance chemo using some drugs he hasn't had yet. This option is interesting because since the new tumor didn't become visible until after Collin's maintenance chemo was finished in August, it could be argued that some of the maintenance chemo was working to keep the tumor cells from growing. This is a concept I will go into at a later date.

Dr.Comito is very informed on the latest treatment options out there. She has been in contact with and referred us to some of the best pediatric oncologists in the country. These oncologists and Dr. Comito are in agreement over the best way to treat Collin next. These decisions are some of the most difficult decisions a parent could ever be forced to make, but we don't have a choice. The alternative, losing Collin to cancer, is not acceptable to us, and we are not ready to give up. So after weighing the options that have been presented to us by the best doctors, we have to make a decision, accept it, and not look back. We are meeting with Dr. Comito this afternoon to further discuss the options for resecting the tumor, the kind of external radiation to be used, the risks, the dose, and where we would have to go to get the radiation. Once the details are worked out, plans will be put into motion. After that we must push ahead, and hope for the best possible outcomes while keeping in mind how tough Collin is and how far he has already come. Your love, support, and prayers are appreciated more than you will know during the next steps of this journey.

Wednesday, November 2, 2011

2011-11-02T20:23:00.000-04:00

There has been so much going on, and things are happening so quickly my head is spinning. I have to keep looking at my watch to see what day it is, and I can barely keep a thought in my head. I don't have much of an appetite, and when I do eat it feels like the food is sitting in my stomach like lead. I hate this constant feeling of fear, dread, and uncertainty.

Monday morning Collin had two therapy appointments. Then around lunchtime I got the call from MSKCC that we had been approved for a consult, and they gave us an appointment on Thursday morning. Next I had to make a bunch of phone calls to reschedule our appointments for the rest of the week, and make arrangements for Neya and Bailey (our dog) to be taken care of while we are gone. With the help of the wonderful people at his office, Bill got lodging arrangements taken care of, and spoke to our health insurance rep.Then it was time to pick Neya up from school, take her to dance, get her to her friend's house for trick-or-treating after dance, and take Collin out trick-or-treating. Needless to say we ate dinner on the run, and we all got to bed way too late.

I had to have Collin at the hospital at 8:00 Tuesday morning for his spinal tap. We started in the pediatric oncology clinic where he was weighed and measured. Since he was going to be put to sleep for the spinal tap, but his mediport was just removed a few weeks ago, he needed to have an IV put in for anesthesia. This can be difficult because his veins are so little, and since he couldn't have anything to eat or drink since the night before, it was even more challenging to find a good vein. One of the nurses spent some time looking for a few good veins, and put emla numbing cream on three possible sites. Then we had to wait for an hour for the emla cream to work. So, we headed to the activity room where we hung out with three THON students who were visiting for the day, and Collin worked on a craft for a little while. Then the doctor who would be doing the spinal tap was ready to examine Collin. This doctor is very laid back and down to earth; he is very entertaining (makes hospital gloves into balloons, etc.) and does his best to let kids be kids. He has tried many times over the last year and a half to make friends with Collin, but Collin hasn't warmed up to him very easily. Well, Tuesday he came into the activity room, put his hand out, and said "Come on Collin, let's go play in the snow." Collin just got up, took the doctor's hand, and off they went! They actually went outside for a few minutes and played in the snow. A few minutes later they came back in, and as Collin came around the corner, he waved and said "Hi Mom!" Then I followed him and the doctor into the exam room. The doctor checked Collin over, and had me sign the consent for the spinal tap. Then we went back to the nurse, and she was able to get the IV in the first site she tried, without Collin even making a peep. Then she put emla cream on his spine, and we went back to the waiting area until they were ready to do the procedure.

Around 11:00 or so, we headed to the South OR where the procedure was to be done. I held Collin on my lap as they hooked up the IV and started the anesthesia. A fellow came in and did the procedure under the oncologist's supervision. I stayed in the room with Collin, and in just a few minutes it was over and there were two small vials of clear fluid that would be tested for cancer cells. Then Collin was taken to a recovery area. It took him a while to wake up, but when he did he was happy and ready to eat. After he ate some crackers, drank some water, and the IV was removed, we were able to go home.

We are now in our (very small!) hotel room in New York City. Collin's appointment at MSKCC is 11:00 tomorrow morning. I spoke to our oncologist earlier, but the final pathology report on the CSF has not been posted yet. She will check again later tonight and again tomorrow, and will let me know when she knows the results.

Saturday, October 29, 2011

2011-10-29T02:51:00.002-04:00

I spent Friday on the phone and online, gathering information, researching options, and trying to educate myself on information and terminology that is difficult to understand, at least without a medical degree. I'm still trying to process and make sense of things. It has been daunting, overwhelming, tiring, and consuming. It's almost 3 am, and I've been reading about different kinds of radiation, anti-angiogenic agents, etc. I feel like I'm back in college, only the stakes are a million times higher.

Our oncologist called Friday morning to let us know that she had spoken to St. Judes. At this time they won't consider Collin for their Phase II trial because he is not yet three years old, and because he has not yet had radiation. (And as a side note, after reviewing the original tumor pathology, it is her hunch that Collin's tumor does not have the hedgehog pathway anyway). It seems so far that the general opinion is that radiation has the most potential to cure this, but our oncologist is hoping to be able to combine some other treatment with the radiation to enable Collin to have a lower dose of radiation. If he were to have the highest dose of radiation that would have the best likelihood of curing the disease, chances are good that he would never be able to live independently because of the cognitive deficits he would be left with. So the trick is to figure out what dose, and what kind of radiation to do that would have the best chance of attacking the cancer without leaving him debilitated. At this point, our oncologist's recommendation is to have a consult at Memorial Sloan Kettering. If Collin would qualify for their trial, perhaps combining a lower dose of IMRT or Proton Beam radiation along with or after administering intrathecal radioimmunotherapy (the radioactive iodine that would be injected directly into the ventricle in the brain) would have the desired effect of killing the cancer without such cognitively debilitating side effects. So, I spoke with MSK and provided them some basic info, and they will contact us to arrange a consultation after the insurance is worked out. It is possible that we could be headed there by the end of next week for a consultation.

After my first phone discussion with our oncologist Friday morning, I posted the information from that phone call on one of the online groups of parents of children with Medulloblastoma. Two parents called me to share their experiences with different kinds of treatment. These discussions were immensely helpful to me. I learned more information about different treatment options, and came up with some important questions to ask during consultations. I also sent email to a few other doctors to see if they'd consult with us.

I am quickly learning that dealing with relapse is in many ways harder than going through this the first time. As Collin's oncologist told me yesterday afternoon, after the initial diagnosis last year, she did the agonizing over what treatment would be best for Collin, and presented us with a plan. But for relapse, there are no proven protocols to follow. We must research the different trials and treatment options out there, see which ones Collin qualifies for, and make a decision based on the information and opinions we're given. Different treatment options work well for some, and not well for others. Different tumors respond differently. There is no rhyme or reason to it. In the end, you roll the dice and hope to God that the choices you make are the ones that will cure your child.

Thursday, October 27, 2011 Recurrence, Options

2011-10-27T14:36:00.000-04:00

Collin has a small nodule in his right lateral ventricle. It is new, and because of how it enhanced on the MRI, they know it is leptomeningeal recurrence. Basically a cancer cell was able to hide from all the chemo, and now that the chemo isn't there to keep the little bastard in check, it has started to grow.

The good news is that there are many treatment options that Collin hasn't had yet, and new treatments have been developed even since his original diagnosis last year. His oncologist feels this can still be curable. She went over a few different options with us today, and over the next week or so some additional testing and consultation will be done to determine which option will be the best one to try next.

Collin will have another spinal tap Tuesday to check his CSF for cancer cells. Despite the coating of cancer cells on his spine at the original diagnosis, he has never had cancer cells in his CSF, so his oncologist doesn't expect to find any now. But the presence of any cancer cells could disqualify him from some trials, so we must check again. In the meantime, slides and samples of the original tumor tissue will be shared with Memorial Sloan Kettering and St. Jude's to determine whether Collin will qualify for either of those hospitals' Phase II trials that would be appropriate.

At Memorial Sloan Kettering in NYC, there is a Phase II study of radio-immunotherapy given for recurrent medulloblastoma. If Collin's tumor has the presence of GD2, a certain protein not found on normal cells, there is an antibody that is attached to radioactive iodine. The radioactive iodine is then given directly into the spinal fluid, and it binds to the tumor cell and kills it. This brings the radiation therapy to the tumor cell without exposing normal tissues to radiation.

At St. Jude's there is Phase II study of the Hedgehog antagonist GDC-0449 in recurrent medulloblastoma. The hedgehog signaling pathway gives cells information that they need to develop. A subgroup of medulloblastoma patients have activation of the hedgehog pathway. If Collin's original tumor has this type of pathway, the current tumor would not be removed (to enable evaluation of effect), and a medication would be given orally for up to 2 years to disrupt the pathway.

Positive points to each of these therapies are that although Collin would need to be seen at one of these two hospitals at least initially, we would not need to stay at either place for extended periods of time. Some of the treatment can be done at home under the supervision of a more local hospital, like Hershey or CHOP. Collin wouldn't have to endure the nasty side effects of chemo such as vomiting and hair loss. There are also other chemo drugs that can be added to the treatment and given at home.

Some of the other questions we are left with looking at either of these options include whether insurance will cover treatment out of state (at least in the case of Sloan Kettering), and transportation. We can take a train to NYC, and there may be some organizations that can provide some assistance with travel expenses. In the case of St. Jude's, they evidently will provide their own transport there the first time, and then after that there may be some assistance from other organizations such as the Four Diamonds Fund, Angel Flight, etc. for the flights needed to get there and back.

Radiation is an option, but at this point it seems best to try other treatments first to give Collin the chance to get a little older so that the side effects wouldn't necessarily be so permanently devastating to his cognitive and physical development. If I understand correctly, getting him to the age of five before giving brain and spine radiation would be ideal.

So in the next week, we will wait for results of the spinal tap and tissue testing. Once we have more information, Collin will have a mediport reinserted, as well as any other ports/shunts/etc. needed for whatever option seems to be best for him. I'm asking for prayers that we will make the best decisions possible for his care, and that we will be able to cure this completely so that this beast cannot return. All children deserve to grow up and have happy, productive lives. Collin has been dealt an unfair hand, but he has proven to be strong and tough, and we will get through this one day at a time because that is our only option. I cannot thank you enough for the love and support that you have all shown us once again. It is so very humbling, and I don't know how I'll ever be able to repay it.

2011-10-26T22:55:00.001-04:00

I should be asleep. Heaven knows I'm so exhausted I could sleep for days. But I can't get past the shock. I can hardly breathe let alone think or function well. I actually wasn't overly anxious this morning. I finally let myself think rationally: Collin is doing great! He looks good! He's making such great progress! I see it every day, and that's what everyone says when they see him. So how can this be? How can it be that I feel like we're right back at the beginning again, after all we've been through? Didn't that count for anything?

Unfortunately I know more than I did the first time around. I know what it's like to watch your kid puke his guts out and need a feeding tube or TPN to keep him from losing too much weight. To watch his beautiful soft hair and long eyelashes fall out because of the poison being pumped through his veins. To watch him endure high fevers because his immune system is shot. To be forced apart from my other child and my husband so that I can stay by my baby's side. To watch him fight to regain what this damned disease takes away. To live with the constant fear I was starting to let go of.

I have a million questions in my head tonight. What is this nodule? Will he need more surgery? More chemo? Radiation now that he's almost 3? What horrible side effects will he have to live with? How much more damage will his little body be forced to endure? Will we need to go to a different hospital, possibly in a different state, to get whatever treatment he will need? How will the four of us handle long periods of separation if we do have to travel for care? What will the cost be financially? What about all the things we were looking forward to: me finally finishing getting the house back to normal, our visit to Altoona, the THON Family Carnival, the fundraiser in November, Thanksgiving, Collin's 3rd birthday, Neya's 2nd grade Christmas concert at the state capitol building, Christmas, THON, Neya's First Holy Communion, her dance recital next June? Along with my peace of mind and my sanity, how much more will cancer take from us? And how will we survive it?

Wednesday, October 26, 2011

2011-10-26T16:16:00.003-04:00

Collin had his MRI this morning. His oncologist called while I was picking Neya up from school, and spoke to Bill. As soon as I got home he had me call her back. The MRI showed a small nodule in one of his ventricles. His spine is clear. Bill and I will be meeting with her tomorrow at 10:00 am. Please pray for us! I am terrified!

Tuesday, October 25, 2011

2011-10-25T22:10:00.021-04:00

As usual, I can't believe how much time has gone by since my last update! I've certainly been keeping busy. Unfortunately our basement flooded on September 7 due to the obscene amount of rain we got from tropical storm Lee, and our house has been in disarray ever since. Because of Collin, we absolutely couldn't chance having any mold grow, so we called a restoration company to come in and dry out the basement. They tore out the baseboard trim and carpeting, and had industrial strength fans and dehumidifiers running for four days. Thankfully the insulation and drywall dried completely, and didn't have to be removed. We moved the toys up out of the playroom when we realized our two sump pumps weren't keeping up with the water and flooding was inevitable, and everything else that was stored in the basement was in Rubbermaid storage bins, so we didn't lose any belonging. But everything had to be moved upstairs, so we had piles and piles of bins in the living room and garage. I decided it was time to go through every single bin before it could be moved back down to storage, and get rid of what we don't need anymore. So over the past few weeks, in between Collin's therapy appointments and other family activities, I have been working on going through everything and deciding what can be thrown away, donated, or re-packed and re-stored. This has of course led to me cleaning out and reorganizing other areas of the house too. It is not a job I had time for, but I decided it was life's way of pushing me to do a job that I wouldn't have done for another 5-10 years. In the past, I found myself too emotionally attached to things to let them go, but I have a different perspective after the last year and a half. It feels really good to simplify. The only part that I had trouble with was going through all of Collin's baby things. When I was sorting through his outgrown clothing, his babyhood felt farther away than Neya's, and I found myself sobbing as I went through his clothing. Every so often things just catch me off guard. I think most of the time I just plow through each day and keep my emotions under wraps because I know they could easily get the best of me. This probably isn't the healthiest way to handle things, and maybe it'll land me in counseling someday, but right now I just do what I have to to get through the day. Anyway, I am happy to say that I finally can see an end to the huge undertaking of getting the basement and the rest of the house back to normal. Last Tuesday the baseboard trim was replaced, Friday it was painted, and last weekend a Salvation Army truck came to collect the many things we donated. Today the carpeting is being replaced and we can start putting the playroom back together. I am so excited for it all to be done; I feel like our house will be more organized than it has been since we moved in almost eight years ago.

On September 23, Collin and I were on our way home from speech therapy when my phone rang. It was Caiden's mom Sam saying they were in the area and asking if they could stop by to see us. I was SO excited to see them outside the hospital! Caiden is doing very well, and it was nice to see him and Collin play like little boys should.

Some of our friends from the Guardian Knights Law Enforcement Motorcycle Club came to visit Collin in August, and gave us tickets to take Collin for a Day Out With Thomas. So on Saturday September 24th, we took Collin to the Strasburg Railroad to ride on Thomas the Train. He had a great time, and cried when it was time to get off the train.

On Sunday September 25, Bill, Neya, Collin and I walked in the Four Diamonds Fund 5K. Team Collin raised $711 for the Four Diamonds Fund. Some of the wonderful doctors, nurses, social workers, and child life specialists who mean so much to us were there as well. It was a beautiful day, and we had a lot of fun. I hope to take part in the event again next year. Thank you to everyone who made a donation!

Collin's physical therapist has been monitoring Collin's feet for the past few months. She has determined that he has planovalgus, which means his feet are flat, and they pronate (lean inward). It is not uncommon for children Collin's age, but since it isn't improving, she recommended that he wear orthotics in his shoes to give his arches more support. He was measured for the orthotics on October 5, and they should be ready any day now. It will be interesting to see whether the increased support helps his balance when he walks.

Last Friday, October 14, Collin's mediport was removed from his chest. Collin wasn't allowed to eat anything after midnight the night before, and we had to be at the hospital at 8:15 in the morning. Collin was cheerful and easy going for quite a while, but unfortunately we waited for almost three and a half hours before they were ready for him in the OR. By the time the anesthesiologist came to have me sign the consent form, Collin was bright red, sweaty, and screaming "Go home, go home!" He was hungry and so tired of waiting. Thankfully he calmed down as I carried him to the OR. I stayed with him until he was asleep, and then grabbed a quick lunch. I had barely finished eating when they called to say the surgery was done and I could go to the PACU to be with him when he woke up. It didn't take him too long to wake up, and thankfully he woke up calmly. Before long he was sitting up, looking around, and asking for his books. In recovery, the nurse brought him some graham crackers and apple juice, which he happily ate. He talked and played, and even put his arm around my back and patted my shoulder at one point, like he comforting me. He watched the nurse take the IV out of his foot without making a peep, and was ready to go. We got home around 3:30, and Collin seemed to feel fine. So fine in fact that he didn't want to let go of a Penn State garden gnome I had bought to put out in the front of the house; he wanted to play with it instead!

The first weekend of October was the first canning weekend for Penn State's Dance Marathon. We had the opportunity to visit some of the students who mean so much to us while they were canning, and despite the cold, drizzly weather, we had fun. Then on October 15, two of the girls from our Altoona THON family came down to meet us. We had a great time with them, and we are very excited to visit the Penn State Altoona campus in November. The students who are so dedicated to THON are nothing short of amazing, and we are blessed to have them beside us through this journey. They are making a huge difference to so many, and the world is a better place with them in it. <3

Thanks to one of the wonderful ladies that work where Collin goes for therapy, we are having a fundraiser on November 11 in Collin's honor. All proceeds will go to the Four Diamonds Fund. It will be a lot of fun, and we are very excited! If anyone local needs information or would like to purchase tickets, please let me know.

Tomorrow is Collin's next MRI. He finished his maintenance chemo in August, so this will be his first scan since being completely of chemo. Please send up prayers and positive thoughts that it will continue to show NED. We have to be at the hospital at 7:45 am. Our doctors are really good about not making us wait too long for results, so I am hoping to have at least preliminary results by tomorrow night. As soon as I know, I will share an update!

Sunday, September 18, 2011

2011-09-18T18:57:00.003-04:00

Collin, Neya, Bill and I will be walking in the Four Diamonds Fund 5K next Sunday September 25. Please consider making a donation to help us give back to the FDF for all the help they've given us, and to raise money to help other kids with cancer. No amount is too small! Just click here to make a tax deductible donation. Thank you, thank you, thank you!

Monday, September 12, 2011

2011-09-12T23:58:00.000-04:00

September is Childhood Cancer Awareness Month. I have been trying to post differents facts, quotes, etc. everyday on my Facebook page as my way of spreading awareness. Awareness leads to funding which leads to research which leads to cures. I know the facts and the stories I share are often grim, depressing, and hard to read. But as a parent of a child fighting cancer, I can't ignore any part of it. More than once I thought I was going to watch my baby die. I truly cannot imagine a worse experience than losing a child, but cancer takes kids away from their parents every single day. I can't know that is happening and not want to change it. But I'm not a doctor, I can't cure cancer. So I'm doing the only thing I can think of to do: fight, by increasing awareness and raising funds for research. I want something good to come out of the suffering that cancer warriors and their families go through, and I hope that my kids won't ever have to see their own children suffer through the battle. And, God forbid, if Collin's cancer were to return, or he ends up with a secondary cancer from the chemo used to fight this cancer, I want him to have more options and better treatments to help him survive.

In earlier posts I mentioned another little fighter, Conner, who was treated at Penn State Hershey Children's Hospital and then at CHOP. Conner received his angel wings on September 4 with his parents by his side. Please keep his family in your prayers as they grieve and try to carry on without their beloved son. Also remember the families of some other little fighters who have earned their wings in the last week: Lennon, Layla, Gabby, and Faith. Fly high sweet angels!

Collin had his latest clinic appointment today. He was waving and saying hi to all of the wonderful clinic staff, and even answered a few simple questions. Part way through the doctor's exam, Collin decided he was ready to leave, and started crying "go go go go go!" He drew a small crowd of doctors and nurses because they're not used to hearing him cry much. The doctor told Collin he would make the exam quick, and in the midst of his screaming he opened his mouth and said "Ahhh" or pointed to where the stethescope should go just like the doctor asked. It really was kind of funny. Then it was time for his blood draw, and (thanks to lidocaine cream) he sat still and didn't cry or flinch as the port was accessed. He's always such a trooper! I was excited to learn that he has gained another quarter of an inch in height since his last visit on August 15. He is also scheduled for surgery on October 14 to have his mediport removed. After the port is out, he'll have to go to the lab for bloodwork (instead of the awesome clinic nurses doing it), and I just hate the thought of him suffering through the needle sticks again. I won't necessarily know where to put the lidocaine cream since it will depend on where they can find a good vein. I guess if I have to, I'll bring the cream with me and after they find a good vein, I'll put the cream on and wait for the hour it takes to numb the site. But even though it makes me nervous, getting his port out is yet another step toward "normalcy"!

Friday, September 2, 2011

2011-09-02T20:03:00.001-04:00

This week has been a busy one! We survived hurricane Irene; we had no power for about eight hours, but due to the generator we bought a few years ago after finishing the basement, we were barely inconvenienced. Thankfully we didn't even need to use it to power our sump pumps. The power outage caused Neya's school to be closed Monday, so her first day of second grade was delayed a day. She is now happily settled into school, and loves her new teacher. I think she'll have another good school year!

Monday was a big day for Collin; he had his very last dose of chemo! God willing, he will never need chemo again! I'm a little nervous because I now I feel like we're not actively waging war against the beast, and I don't want it to ever come back. However, it's nice to not be giving him the measured doses of poison that along with killing cancer cells have also dried out his skin and caused irritability, nausea, constipation, and many other nasty side effects.

I have taken Collin to two Kindermusik classes since my last update. The first week, he didn't want to take off his sunglasses (usually he doesn't keep them on!) and he sat on my lap and buried his face against me. But as the class went on and I participated, I slowly turned him around so he could see what we were doing. By the time the teacher read a book to the kids, Collin got off my lap and sat down right in front of the book, and was pointing to the pictures! By the end of the class, he was having a good time. During the second class, he participated the whole time, singing, dancing, and playing instruments to the best of his ability. It brought tears to my eyes to watch him having so much fun, because I remember where he was a year and a half ago. He's come such a long way since then!

The eye surgery that Collin had in March to straighten his eyes has not worked the way we expected it to. At some point during the tumor resection in April of 2010 and the increased pressure in his brain in the days following the surgery, damage was done to the sixth nerve that controls the lateral rectus muscles of the eyes (the muscles that pull the eyes outward). In March of this year, the pediatric ophthalmologist at Hershey (Dr. W) performed surgery to weaken the medial rectus muscles (the muscles that pull the eye inward) in order to give the lateral rectus muscles a chance to pull the eyes outward with no resistance. Following the surgery, Collin's eyes turned outward a little, but not as much as we had hoped, and now his eyes have turned inward again. To further try to correct the position of the yes, Dr. W is recommending two more surgical procedures. In the first one, he would tighten the lateral rectus muscles so they would pull the eyes outward, and he could also try to further weaken the medial rectus muscles so they are pulling the eyes inward even less. However, in the end, he doesn't feel Collin's eyes will be as straight and mobile as we would like. In the second procedure, he would move the muscles that pull the eyes up and down over to a lateral position so they pull the eyes outward instead of up and down. His eyes would still have some up and down movement, but still wouldn't have as much side to side movement as he would have normally.

Last week we took Collin for a second opinion to the pediatric ophthalmologist (Dr. F) who sent him for the MRI that showed his tumor in 2010. After examining Collin and reviewing his records, Dr. F does not feel that doing the first of the two procedures mentioned above will benefit Collin at all. He feels that at this point, since there has been no improvement in the sixth nerve, that the lateral rectus muscles that pull the eyes outward are esentially dead, and moving them forward on the eyeball will not help them pull the eyes outward. He feels that the best option for improving the alignment of Collin's eyes is the second procedure recommended by Dr. W. However, Dr. F explained that there are some major risks involved with the surgery. The muscles that move the eyes up and down also supply the bloodflow to the front of the eyeball. Removing the blood supply during the surgery to move the muscles can cause inflammation, glaucoma that is extremely difficult to treat, and even blindness. He recommends a blood vessel sparing surgical technique to reduce the risk to Collin's sight. However, there are very few surgeons that perform the surgery using the blood vessel sparing technique.

Dr. F also discussed the option of doing nothing further to Collin's eyes at this time. He said nothing would be lost if we were to wait, and that any surgery could be performed at a later time. Collin has learned to compensate well enough that he has functional vision at this time, although it is nowhere near ideal. Perhaps different surgical techniques will be invented or perfected in the future that would reduce the overall risk to Collin's sight.

Monday, August 15, 2011

2011-08-15T22:48:00.003-04:00

Collin had his clinic visit today, and it went very well! He weighed in at 14.5 k (31.9 lbs), and this is the second time he stood on the scale himself (instead of the nurse weighing me alone, then me holding Collin, and taking the difference)! Then he was able to stand for his height to be measured; we did it twice because I was surprised at the number; he was just a hair under 35" which means he has grown almost half an inch in a month!

Today we saw one of the other pediatric oncologists who hasn't seen Collin since he was in the hospital last year. He was pleased to see how well Collin is doing. We talked about how Collin has handled the Accutane, and I mentioned how it seems to me that Collin's skin becomes more dry on the right side of his face than it does on his left when he is on it. He explained that the damaged nerves that cause the right-sided facial paralysis are also part of the autonomic nervous system, and it's possible that that contributes to the skin drying out more on the right side. He said he wouldn't be surprised if Collin sweats more on one side of his body too; I've never looked for it, so I'll have to see if I notice it now. It was just nice to know that there's an explanation for the pattern of dry skin from the Accutane and that I wasn't imagining it. We picked up the last round of Accutane from the pharmacy today, and tonight Collin had the first of his final 28 doses. In two weeks he will be finished with his maintenance chemo!

Today's labwork showed Collin's ANC was 2420; normal would be around 3000, so it would seem that his immune system is pretty good. Sometime in the future his IGG (immunoglobin) level will be checked which will give us more information about how Collin's immune system is. Once his mediport is removed sometime in the fall, I won't have to rush him to the ER for blood cultures every time he gets a fever. Hopefully it will make flu season a little less worrisome!

Collin continues to make progress walking on his own at home, although balance is still an issue. He still falls multiple times a day, and many times he will fall right on his face. Every time he falls it breaks my heart, but every time he just picks himself up and keeps going. He never gives up. His physical therapist gave him a few weeks break, and then re-evaluated him on Aug. 5. She feels the balance issues are largely due to muscle weakness, and she will now be seeing him every other week to continue working on his muscle strength and balance. She also gives us activities to work on at home with him to help.

Since we are now only going to therapy two to three days a week, I signed Collin up for a Kindermusic class that starts the end of this month. He loves music, and his speech therapist said that Kindermusic will reinforce some of the things she works on with him. I am also going to register him for the next session of toddler story time at the library in September. I am ridiculously excited to expose him to some new experiences, get him around other children in a more "normal" setting, and do some of the things with him that I used to do with Neya when she was his age!

Collin has come so far in a little over a year. He is a happy, joyful little boy with a sense of humor, and he makes me laugh on a daily basis. One day last week, he and Neya were playing. Neya was laying on the floor setting something up that she didn't want him to touch, so she kept telling him to leave it alone. This of course made him angry. I called him over to me to try to distract him. But a minute later he walked over to Neya, leaned down and yanked her headband off her head, and walked towards me as fast as he could without falling...with a big grin on his face! I just laughed hysterically; it was such a normal brother thing to do! Another day, Collin's student speech therapist was working on his word cards with him. She showed him the picture of an eye, which we knew he can say very well. She asked him what the picture was. He got a smile on his face, and said "nose." She said, "That's not a nose. Where is your nose?" Collin then pointed to his nose. She asked him again what was in the picture. He grinned again and said "nose!" He certainly has a sense of humor!

This evening I learned that another little Medullo warrior earned his angel wings today. Little Bo was diagnosed in 2009, and relapsed this past February. His CaringBridge page can be found at http://www.caringbridge.org/visit/bostory. Please keep him and his family in your prayers.

Thursday, July 21, 2011

2011-07-21T16:38:00.002-04:00

Collin had his quarterly MRI today. Originally he was given an 8 am timeslot, but we got a call last night that the MRI machine had broken, and they pushed him back to 9:30 am. I called before leaving the house this morning, and thankfully the part needed for repair was flown in and got to the hospital this morning, and the technician was almost done fixing the machine. I was worried about how Collin would react when I told him he couldn't eat breakfast, but he handled it pretty well.

In the MRI waiting room, Collin looked like he was going to cry, but he leaned his head against mine and stayed strong. I managed to distract him, but seeing him nervous made me want to cry. I was so proud of how brave he was! Then when the anesthesiologist put the mask over Collin's face that would deliver the gas to put him to sleep, he kept saying "shirt, shirt." He was concerned about his Wiggles t-shirt that I had taken off so the anesthesiologist could access his mediport once he was asleep! After the MRI as Collin was waking up, the nurse asked if Collin is always so calm and easygoing, because he wasn't fussing much, he was just cuddly and asking to get dressed.

Once Collin was being put into the MRI machine, I headed up to the 7th floor to visit our nurses. I also ran into little Sean's dad. Sean is doing well, and should be completely done with his treatments in October. Their journey has been even longer than ours; please continue to keep Sean and his family in your prayers!

I didn't expect to get any MRI results until sometime this evening, but our oncologist's nurse called this afternoon. The MRI was ALL CLEAR!!! I can't stop smiling, I am so happy and relieved! Thank you for all of your prayers and positive thoughts! Please keep them going for all of the kids in this fight, their families, and the dedicated doctors and nurses that care for them!

Monday, July 18, 2011

2011-07-19T17:00:00.002-04:00

Collin had an episode of vomiting last Friday that really made me anxious. He had eaten dinner, and was sitting in the recliner watching Elmo on the iPad when out of the blue, with no crying, gagging, or coughing beforehand, he threw up. He had no fever, and he seemed perfectly fine before and after the episode. Even though I know kids who have had tumors where Collin's was tend to throw up easily, the incident really increased my (already high) anxiety, because vomiting for no apparent reason was one of the first symptoms of the tumor and I dread relapse. Thankfully he has not thrown up since Friday, and seems fine. He also shows no evidence of chicken pox (and my shingles are almost gone-yay!)

Today at his routine clinic visit, I talked to his oncologist about the vomiting, but she wasn't concerned at all. She wasn't surprised or concerned either that he hasn't grown taller in quite a while; she said it's not unusual for it to take at least a year off treatment before kids start to grow taller again.

Collin's last dose of his current chemo (Etoposide) will be July 26. He has two more rounds (14 days each) of Accutane, and then he will be totally finished with chemotherapy by the end of August. On one hand I am excited to be able to stop giving him measured doses of poison. I know it is progress, a milestone in his treatment. However, it's scary as well, because not giving him chemo means we're not physically fighting the cancer anymore. It's a terrifying thought.

Collin's oncologist talked about something (coincidentally) called "Collins' Law." Basically it's a formula for predicting "risk for recurrence of embryonal tumors including medulloblastomas." It is determined by taking the person's age at diagnosis (16 months for Collin), and adding 9. So, the next 10 months are critical; if by May 2010 (25 months from Collin's original diagnosis) he is still free of any clinical evidence of recurrence, he is considered "cured." There is still a small risk of secondary cancer years from now that can be caused by the chemotherapy Collin has received over the last year and a half. So please pray that Collin's next MRI this coming Thursday still shows "No Evidence of Disease." As soon as I know the results, I will share them!

Friday, July 15, 2011

2011-07-19T16:54:00.005-04:00

When Collin was still in the hospital, we tried to keep him busy any way we could...different toys, dvd's, etc. One of the things he loved (and still loves) was watching videos of The Wiggles. He knows all of the songs, and he sings and dances to them regularly. So when Bill found out that The Wiggles would be playing at the Hershey Theater, we knew we had to get tickets and take Collin to the show.

Then I thought it would be neat if Collin couldget a chance to meet The Wiggles in person, and I decided on a whim to call the theater box office. I explained just how much The Wiggles meant to Collin and what they've helped him get through, and asked whether it would be possible for Collin to meet them. Phone calls were made and emails were sent, and in the end we received an email offering a meet-and-greet. We were so excited, and I couldn't wait to see Collin's reaction when he was face-to-face with The Wiggles!

The concert was yesterday. We had to be there an hour before the show. There were about four or five other families there for the meet-and-greet aswell. We sat in the theater, and talked to two of the dancers. Then Sam, Murray, Anthony, Captain Feathersword, and Brad (who was standing in for Jeff who had recently had surgery and wasn't able to travel yet) came out, and spent time talking and posing for pictures with each family. They were SO very nice!

The concert was a lot of fun, and Bill and I enjoyed it as much as all the kids there. The Wiggles put on a great show; they were very interactive with the wholeaudience, and genuinely looked like they enjoyed every minute of the show! I had expected Collin to sing and dance along as he does at home, but instead he just watched and took it all in. He did fall asleep for a while in the middle (it was his normal naptime, and he couldn't fight sleep any longer), but he woke up before the end of the show. At the end of the show, he kept waving to the stage and saying "Wiggles, Wiggles!" Now, Collin loves to wear his Wiggles concert t-shirt and look at the pictures!

Sunday, July 10, 2011

2011-07-19T16:51:00.001-04:00

Recently Collin's physical and speech therapists used certain words to describe some of the difficulties he has. I have done some quick research (Google) to try to understand the terminology.

His physical therapist mentioned ataxia, which describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects. It usually results from damage to the cerebellum (where Collin's tumor was), the part of the brain that controls movement, muscle coordination, and balance. It can affect any part of the body. When it affects mechanisms of walking (as it does with Collin), there is instability with a tendency to fall. The gait appears "drunken" (I've told Collin he walks like a drunken sailor many times!) His balance is also affected; he may fall spontaneously or be unable to compensate for variations in the ground or a mild push from the side. He is making progress with walking, and the slower he walks, the better he does (the less he falls). I asked if the ataxia will eventually go away, but of course his physical therapist can't give me any guarantees.

His speech therapist used the words Apraxia and Dysarthria.

Apraxia of speech is a motor speech disorder. Children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. One of the most notable symptoms of apraxia is difficulty putting sounds and syllables together in the correct order to form words (I notice this in Collin). Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia is the incorrect use of the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Dysarthria is a condition that occurs when a nerve, brain, or muscle disorder makes it difficult to use or control the muscles of the mouth, tongue, larynx, or vocal cords, which make it difficult to pronounce words. Dysarthria often is characterized by slurred or slow speech that can be difficult to understand. In Collin's case, the dysarthria is the result of damage due to the location of his brain tumor, and from damage (from the tumor surgery) to the nerves that supply the muscles that help him talk. Collin is continuing to make progress with his speech, but no one knows how long it will take for the damaged nerves to recover, or the extent to which they will recover.

Friday, July 8, 2011

2011-07-08T20:11:00.016-04:00

Wow! I've been meaning to write an update for a while now. I didn't realize I haven't written since the middle of May! I guess the busier life is, the faster time seems to fly by...

Neya had a great year in first grade, and is enjoying her summer. She had her ballet recital a week after school ended, and I was so excited to be able to attend this year! She danced in three numbers and did a great job! The recital was spectacular. I signed her up for our township recreation program's summer camp, which runs for three hours a morning four days a week for the month of July. She seems to be enjoying it and at least it gets her out of the house and she can spend time with friends. Of course the added benefit is not having to drag her to all of Collin's therapy and clinic appointments. When she does accompany us to therapy appointments, she enjoys being involved and helping Collin, and he enjoys having her by his side, but eventually she gets tired of going with us. We (and by that I mean Bill!) have finally been able to teach her to ride her bike without training wheels. I feel bad that it has taken this long, but last year we just never gave it a thought. So since her bike was a few years old and her knees where hitting the handlebars, we took her shopping for a new bike last weekend. She's very proud of her new bike!

Collin continues to go to therapy every week, and clinic appointments every other Monday. He is doing well and making progress in therapy. He is now walking very short distances in the house without holding on, but his balance still needs a lot of work. Between not walking for a year and the location of the tumor, the balance will take a while to come back (if it comes back completely). Today his physical therapist reviewed her current goals for him, and since he has met many of them, she has decided to give him a few weeks break. We have reduced occupational therapy to once a week for the summer to lighten our schedule a bit with Neya being out of school. Collin is doing very well feeding himself, but continues to need to work on strengthening his right hand. In speech therapy he continues to work on strengthening his facial muscles, and of course learning to speak. Progress is slow, but he continues to try new words all the time, and we are learning to understand him better, which definitely makes life easier (sometimes)! He understands everything we say; imagine how incredibly frustrating it is to him when we can't understand him! During his last hearing test, the audiologist still couldn't get a complete read on his right ear, but he really seems to have no trouble at all with hearing. The eye surgery in March didn't help his eyes the way we had hoped, and they have turned in again. His ophthalmologist has recommended two more surgeries, but nothing will be done until he is finished with his maintenance chemo, which will be sometime in August. He is eating well and has even been called chubby, but unfortunately his height has not increased in quite a while (another side effect from chemo). His hair is growing, and he even needs another haircut!

Even though I thought I was handling my stress pretty well, I guess I was wrong; I developed my first case of shingles last week. Since Collin's vaccines were wiped out with the chemo and stem cell transplant, he has no defense against chicken pox (the dormant virus that causes shingles) so it would be very dangerous for him to catch that from me now. His oncologist had me bring him in to the clinic Wednesday for an IVIG (immunoglobulin) infusion to give his immune system a boost. I'm just praying he doesn't get chicken pox from me. I try my best to care for him and protect him, and never thought I could be a threat to him.

Along with the shingles, this has been a tough week on my emotions. I was very worried for our little friend Caiden, who has been unable to put weight on his right leg since the end of last week. X-rays didn't reveal any breaks or fractures, so the oncologist ordered an MRI for July 5. When Caiden showed symptoms of his brain tumor last year, inability to bear weight on his right leg was one of his symptoms, so there was fear his cancer had returned. Thankfully the MRI showed no tumors, but it did show that his bones are very thin as a result of the chemo he had. He is now in a cast for three weeks. Also, on July 4, a little six-year-old boy whose parents are part of the online Medulloblastoma group we belong to earned his angel wings quite suddenly. The loss of Tony and fear for Caiden, as well as some shocking news about one of our doctors, really had me in a tailspin. As if that wasn't enough, Collin's next MRI is coming up on July 21, and "scanxiety" has set in early for me. Collin falls regularly, and has had a few episodes of looking nauseous or vomitting. Now, I know there are perfectly rational explanations for these occurrences: he is walking more on his own, and since his balance is still not great, falls are expected. He falls more when he tries to walk too fast. As for the nausea/vomitting, he didn't have the anti-emetic the morning of those days, and vomitting is also a common residual effect from where his tumor was located. But it's hard to see your baby take face plants into furniture or the floor regularly, and it's frustrating to see him throw up his dinner after he happily ate it. And since falling all the time and throwing up were symptoms of his tumor last year, it's very hard for me to just assume these things mean nothing. As his mom, my fears that his cancer will return will never disappear, and they easily take over at times. I know of kids who have relapsed even though they are on chemo, and/or showing no outward signs of recurrence. I know just how quickly the rug can be pulled out from under us, even if we don't see it coming.

Please continue to pray for healing for Caiden, Conner (who I wrote about in May; he has just returned home for a week long break after four long months in the hospital before he continues his treatment at CHOP), Collin, and all of the other children who are undergoing treatment and/or dealing with the ongoing side effects of treatment. Please pray for comfort for Tony's wonderful and devoted family and friends, and all of the other childhood cancer warriors who have lost their battle. Please continue to pray for the wonderful doctors, nurses, therapists, and other caregivers who do their best caring for the children battling cancer. And please continue to pray for the cure that is needed so desperately.

Neya before her recital with some of the awesome students from Penn State Altoona THON who helped make her day special...

...and after the recital with some of her beautiful flowers

Neya on her new bike and Collin in his car, ready for a ride

Collin finger painting on the mirror with shaving cream during OT

Collin giving in to the Benadryl during his IVIG infusion Wednesday

Tuesday, May 17

2011-05-17T17:09:00.002-04:00

Just a quick update. Collin had a clinic appointment yesterday to re-check his creatinine level. I found out this afternoon that it was back down, to .34. So this evening he can resume his maintenance chemo, and the Acyclovir.

This morning Collin put two words together. He said "bye bye Neya," instead of just "bye-bye." I think that is only the second two-word phrase I've heard him say, other than when he says "all done." I was excited to tell his Speech Therapist! He did well in Speech today; he blew ten bubbles in a row off the wand, which is not as easy as it sound with right side facial paralysis. He is also recognizing more of his word cards and needing fewer cues to say the words. He did well in Physical Therapy as well today. He enjoys practing going up and down the steps, and kicking a ball. His Physical Therapist joked that she may start a pool for people to guess when Collin will start walking on his own because he's so close, and give the proceeds to the Four Diamonds Fund! He manages to take about two to three little steps on his own before he falls. I figure once he gets the hang of it, there will be no slowing him down!

May 12, 2011

2011-05-13T13:26:00.002-04:00

Collin has been getting a break from chemo this week since his creatinine level was found to be elevated Monday. He is also getting a break from his twice daily dose of Acyclovir, an antiviral drug being used to protect from chickenpox and shingles (which would be dangerous for him to contract) since the drug is also filtered through the kidneys. A normal creatinine level for someone Collin's age is .3 to .7; his level typically runs between .33 to .38. On Monday his level was .73, so even though it's not too far above the high end of normal, it's higher than usual for Collin. By giving his kidneys a break this week, his creatinine level is expected to be lower next Monday. Then his creatinine level may be checked more often the next time he receives Accutane.

The Accutane has also taken a toll on Collin's skin. As I mentioned during his first round of the drug, it can be very drying. I kept his skin and lips moisturized during his first round, and it didn't seem to affect him too much. During the second round though, it seemed to affect him more, and more quickly, than the first round. His cheeks, lips, arms, and legs are red and look sunburned, and are dry and flaky despite the moisturizer. Hopefully this will clear up soon!

I would like to ask for prayers for another little cancer warrior named Conner. He is a sweet five-year-old boy whose family learned today that his cancer has relapsed a second time. He is fighting hard, and at the same time is trying to heal from neurological toxicity caused by a chemo drug. The challenge ahead is to find a chemo drug that will be strong enough to fight his cancer without causing more neurological damage. Having been dealt some tough blows during Collin's journey, I can imagine the despair is parents might be feeling after today's news, and my heart is breaking for them. Please pray hard for healing for Conner, strength for his family, and wisdom and guidance for the doctors treating him.

May 9, 2011

2011-05-09T21:15:00.003-04:00

I had a very nice Mother's Day yesterday, spent with family and friends. It was a joyful day, such a welcome change compared to Mother's Day last year, when I didn't even know if Collin was going to survive. It really is amazing to think about how far we've come in a year.

Today was another busy day, but it was a good day. Collin had speech and occupational therapy this morning. He worked hard in both therapy sessions, and I expected him to be asleep before we left the parking lot. But he stayed awake as we drove over to the other end of the hospital campus. We had lunch, ran into Caiden and his family (he's doing well, he looks great, and his hair is starting to grow back), visited our nurses on 7W and met another friend (a wonderful mom of another tough fighter), and then headed back down to the clinic for Collin's next appointment. Collin's weight was 14k (30.8lbs) which is the highest it's ever been. He's definitely been eating well! Today's visit was just to check his bloodwork, so once the nurse drew blood, we were able to leave. It wasn't until the ride home the Collin finally conked out and napped for about an hour.

Later this afternoon, a nurse from the clinic called me with the CBC part of Collin's lab results. His white blood cell count was a little lower than it's been recently, as was his ANC. His ANC was still above 1000 though, so he still has a bit of an immune system. Then early this evening, his oncologist called to say that his kidney functions had come back, and his creatinine was high. This indicates his kidneys are not filtering his blood the way they should be. Collin just finished his second round of Accutane this morning, and his oncologist said she has seen Accutane affect renal function. So, she is having me hold the chemo drug Etoposide for this week to give his kidneys a break, and will have his bloodwork re-tested in one week, instead of the usual two weeks.

May 5, 2011

2011-05-05T22:32:00.009-04:00

In my last blog post, I mentioned that Collin had his six-week post-op visit with the ophthalmologist who did his eye surgery in March. It was a frustrating visit; to make a long story short, there was a lot (ie. too much!) of waiting, and in the end we only saw the ophthalmologist for about three minutes, and I never got to finish talking to him. He emailed us a copy of his visit summary & recommendations. Collin's eyes did not respond to the surgery as well as the ophthalmologist originally expected, (and I actually think the right eye has turned back in a little bit since the surgery), and he is recommending two more surgeries. I'm not sure what his timeline is for the second surgery, but the third surgery would have to be at least six months after the second surgery. When I discussed his recommendations with Collin's oncologist, she recommends waiting until Collin is finished with his maintenance chemo, which I believe will be sometime in July. So as things stand now, nothing further will be happening with Collin's eyes in the near future, other than possibly seeking a second opinion. So, I continue to patch his left eye for two to three hours a day. I recently decided to start patching him during his therapy appointments so he is kept more occupied and distracted while the eye patch is on. Originally I was purposely not patching him during his therapies because I was afraid the eye patch may hinder his therapy, but interestingly enough, it hasn't gotten in his way at all. There are actually times when he seems to do better with the patch, so his therapists and I have speculated that the patch probably takes away the double vision we assume he has, and allows him to see things easier. Oh how I wish Collin could tell us!

Collin has been doing so well in his therapies. In speech therapy, he continues to learn new words, and his ability to blow a bubble on a wand or to blow a plastic horn hard enough to make it whistle is progressing. Yesterday in occupational therapy, he used his hands (with some assistance of course) to make a Mother's Day gift for me; he decorated a styrofoam cup with crayons and stickers, scooped soil into the cup, put marigold seeds into the soil, and poured water into the cup. Today in physical therapy he worked on balance and walking, and even though his legs were getting so tired they were shaking and we kept encouraging him to take a break, he wanted to keep going. He usually works so hard in his therapies that he is asleep before we leave the parking lot!

Today I took Collin shopping for new sneakers, and then decided to take him to the barber to get his hair trimmed. It was his first real haircut by a barber. I wasn't sure how he would handle it, but he sat in the chair and was a perfect angel the whole time! I guess after everything he's been through, a little haircut isn't scary at all! It was a beautiful and fun day, and it was nice to take Collin out to do some "normal" things.

I don't want to forget to mention that May is Brain Cancer Awareness month-spread the word!

One Year Ago...

2011-04-22T11:20:00.003-04:00

Today...as I wake up and think about the things on my to do list for the day, it seems kind of surreal to me. Take the kids to get a picture with the Easter bunny. Take Collin to a doctor's appointment. Work on laundry. The kind of things most people are lucky enough to take for granted. But I am more thankful than you can imagine to be doing those normal tasks today. Because today is a day I wasn't sure I'd see. One year ago today, my world fell apart. One year ago today, my sweet, innocent baby boy was diagnosed with cancer. I had never felt such helplessness, fear, or despair in my life.

When Collin was first diagnosed, there were some thoughts that occurred to me that I haven't shared with many people up until now. When I had my first baby, I didn't really know just how fast the time would go, and that in the blink of an eye, she wouldn't be a baby any longer. People told me that time would fly, but I was so wrapped up in learning how to care for this tiny new person in my life that I didn't stop often enough just to enjoy it. But when Collin came along, I knew better. There wasn't a day that went by that I didn't know how lucky I was to have him. I enjoyed the softness of his hair, hearing the little sounds he made, seeing all of his expressions, and inhaling his scent after he was freshly bathed. I didn't mind so much when he woke me in the middle of the night. I loved just holding him, and watching him as he nursed, and worried less about the household chores I wasn't getting done, because I knew that his babyhood was fleeting. But at some point, strange thoughts began to pop into my head during the quiet times with him. I wondered how I could go on if something happened to him, how I'd survive without him. Then one day I wondered how I'd survive if someone in my family had cancer. It was kind of a bizarre thought, since at the time no one in my family was even sick. I chalked it up to me being a worrywart, and tried not to dwell on it. But now looking back, I can't help but wonder if it was life's way of preparing me for what lay ahead. Of course, Collin was the last person I expected to have cancer.

Despite the heartache and fear, there have been many blessings over the last year. The wonderful doctors, nurses, therapists, and other staff that have worked so closely with Collin and our whole family. They saved Collin's life, and have become like family to us. The love, support, and countless prayers we have received from family, friends, and even people we've never met that have held us up and given us the strength to keep going even on the hardest days. The amazing group of Penn State college students who work tirelessly to raise phenomenal amounts of money for the Four Diamonds Fund to support area families who have a child being treated for cancer at Penn State Hershey Children's Hospital and fund ongoing research to find a cure. These students are among the most dedicated and ambitious people I have ever met, and I am glad my kids have them as role models. And the other childhood cancer warriors and their families who we have met who have offered understanding, support, information, and hope. I am keeping you all in my prayers, and look forward to the day when no other parent has to endure what we've all been through.

Here's to the year ahead, a year in which I hope Collin continues to be cancer free, a year that will hopefully get us one step closer to a cure once and for all.

A huge sigh of relief!

2011-04-15T16:18:00.001-04:00

I just read an update on Caiden, and couldn't wait to share! From his mom:

"Wow what a stressful week! First I want to share some great news; the nurse had misinformed me on the diagnosis that I had shared with every one of the dreaded Pseudomonas aeruginosa. The results were still inconclusive when she shared that diagnosis (although I didn’t know that). The two bacteria have some similar traits so that is what the doctors were suspecting and sharing with everyone at rounds. It turns out that it is a much nicer bacterium called Klebsiella which is commonly found in the mouth and gut. However it did make it to his bloodstream which caused him to become very ill with Klebsiella Sepsis. We are now back home with an oral antibiotic and Caiden is recovering nicely. Thanks to everyone for your prayers, they worked! All our love!"

Tuesday, April 12

2011-04-12T23:25:00.002-04:00

I have mentioned our friend and fellow cancer warrior Caiden a few times in past blog posts. We met him and his wonderful mother in the hospital, as we were often there at the same time. Caiden, who is almost two years old, has undergone multiple rounds of chemo, as well as two rounds of high dose chemo with stem cell rescues. His poor little body has been through so much, but he was finally able to go home recently, where he has been getting more chemo, much like Collin. Yesterday, both Collin and Caiden had clinic appointments, and we went to say hi to Caiden and his mom. We found out that Caiden had been to the ER the night before because fevers (that had gone as high as 106.3) and he was receiving IV antibiotics in the clinic. He was admitted back to the hospital yesterday from the clinic because he was so sick. I just learned that the blood cultures revealed today a nasty bacterial infection called pseudomonas aeruginosa.

Pseudomonas aeruginosa is an opportunistic bacteria commonly found in soil and water. For most healthy people, this bacteria seldom poses a problem. Unfortunately, it is much more dangerous to certain populations, including those who have weak immune systems, the elderly, patients with severe burns, and in cancer and AIDS patients who are immunosuppressed. It causes urinary tract infections, respiratory system infections, dermatitis, soft tissue infections, bacteremia, bone and joint infections, gastrointestinal infections and a variety of systemic infections. Because this bacteria is relatively resistant to most antibacterial medications, infection can be deadly, particularly when it becomes an infection of the lungs or bloodstream. In patients hospitalized with cancer, cystic fibrosis, full-blown AIDS, and burns, the case fatality rate in these patients is near 50 percent.

I am asking all of you who have prayed so hard for Collin's recovery to please pray for Caiden's as well. I will do my best to keep you updated as I get information. You can read more about Caiden at his mom's blog: http://fortheloveofcaiden.blogspot.com.

Friday, April 8

2011-04-08T13:22:00.005-04:00

Collin had his latest MRI Wednesday morning at 8:00. The MRI itself went fine. Collin woke up from the anesthesia pretty easily, and he wasn't grumpy. But this time he was pretty drowsy for the rest of the day, and looked a little drunk. I couldn't help but chuckle a little. I had hoped to have the results by Wednesday night, as his oncologist is very good about not making us wait longer than necessary because she knows that the waiting is full of anxiety. Evidently there was only a preliminary report by Wednesday night; the radiologist didn't get the final read and report up until Thursday. So Thursday afternoon I finally got the news we had been hoping for: all clear, no evidence of disease! So we get to breathe a little easier for a few months (until the next one...)

Thursday morning, Collin had his latest hearing test. He cooperated so nicely during the test, and was quite pleased to be rewarded with more stickers to add to his collection. The results weren't much different than the last hearing test; he has some high frequency loss on the right side. If he continues to test positive for high frequency loss, he may eventually need to be fitted for a hearing aide, because high frequency hearing is important when learning speech. From day to day though, he seems to hear and understand without any difficulty. He'll be retested in two months.

He is continuing to tolerate the maintenance chemo pretty well. The Accutane is causing his skin to be dry, so I keep putting moisturizer on him. He had seemed fussy for a few days, but that seems to have subsided, so maybe it wasn't caused by the Accutane after all.

In case I don't say it enough, thank you all so much for your prayers and positive thoughts. I appreciate them more than you know!

Saturday, April 2 - Maintenance Chemo Cycle 2, Day 13

2011-04-02T23:54:00.001-04:00

I've been trying to type this update for the last week, but I just didn't seem to be able to get it done. I've been feeling down, but I can't put my finger on any one specific reason why. I'm worn out, physically, mentally, and emotionally. I wake up feeling just as tired as I did when I went to bed, and I struggle to find energy or motivation to get things done during the day. My memory is horrible, and I can't focus. Maybe the last year is finally catching up with me.

This weekend is one year since Collin's health started to decline. It was Easter weekend, and he started vomiting that Friday. By Saturday night we had him at the ER at Harrisburg Hospital, and he was admitted due to dehydration. He vomited a lot that weekend, but there were other kids in the hospital with the same symptoms, so we thought he had the same bug they had. It never dawned on me at the time that he didn't have a fever, and that maybe that should have been a clue that something else was wrong.

To look back over the last year is overwhelming for me. I know how close we came to losing Collin. I also know how far he's come, and just how blessed we are, and I'm thankful for that every day. But part of me is also grieving, for the child Collin would have been, and the normal childhood he deserved to have. For life not tainted by the fear that lurks, making part of me afraid for what the next week, month, or year might bring. I had what I think was an anxiety attack recently, where suddenly my heart was racing, I felt like I couldn't breathe, and I was crying, just terrified that something was going to go wrong. Luckily it passed pretty quickly. Then I read an article about how parents of children with cancer suffer from post traumatic stress. Makes sense to me.

Collin's clinic appointment last Monday went well. He weighed in at 13.3 k, which is 29.26 lbs. He has recently seemed even more interested in food, and is eating like he's making up for lost time. It's nice to see him eat like he used to before he got sick. He's also doing well using utensils to feed himself. This has helped cut down on some of his frequent meal time tantrums, which (as best as I can tell) are usually caused by difficulty communicating and frustration over not being able to do things himself. Unfortunately vomiting is still an issue; sometimes it will be caused by gagging after Collin tries to stuff too much in his mouth at one time, and other times it just happens out of the blue. Tuesday was one of those nights; there was not even a warning cough or gag, just a sudden large mess. No sooner did I get his bib changed, and it happened again. I gave up on washable bibs a long time ago; I use disposable Pampers Bibsters, and we now order them by the case. I have to simplify my life where I can.

Mornings seem to be a mad rush to get everyone up, ready, and out the door, no matter how early I get started or how organized I try to be, although truth be told lately I just keep getting out of bed too late. I manage to get Collin to all of his therapy appointments, clinic appointments, etc. We're usually out for a few hours at a time for appointments. Then I try to make sure he takes a nap. If he falls asleep in the car on the way home from therapies, etc., I will sit in the car in our driveway until he wakes up, because if I try to take him out of the car, he'll wake up and then not go back to sleep. Or, if we are home, he'll only nap on me or Bill, so his naptime isn't usually time I can use to get things done, but at least I value the little bit of down time it gives me. Then there's the eye patching. His eye is supposed to be patched for two to three consecutive hours each day. I don't patch him during his therapies because I don't want to interfere with them, which mean it usually has to be done after therapy, nap, and lunch. Once I put the eye patch on him, I have to stay right next to him and keep him occupied to make sure he doesn't take the patch off. If I go try to get a jump on dinner prep, wash dishes, etc., he takes the patch off. Before I know it, it's time to pick Neya up from school, make sure she gets her homework done, referee her and Collin, etc. Then when Bill gets home we tag team to get together something for dinner, get the kids bathed/showered and ready for bed, and I get myself ready for bed. I'm exhausted by 8:00 pm. Sometimes I go to sleep when the kids do, and other times I may watch some TV or read just to escape for a little while before I go to sleep. There are always things left unfinished, and there's never much time to do things just for fun. So if I take too long to answer email, send a thank you note, return a phone call, etc., please forgive me!

Collin is now on his second round of maintenance chemo. One of the chemo drugs he's back on is very constipating for him, which adds a new level of fun to our life. The Colace stool softener apparently tastes so bad that 90% of the time he'll vomit as soon as I give it to him, so now I'm trying to find the right dose and frequency of Miralax that will help him go without taking him to the other extreme. Who knew my life would become consumed with the finer points of...digestion?!

Collin also started another chemo drug Monday that he's not been on before, called Accutane. If it sounds familiar, that is because it is used at lower doses to treat acne. It's a pretty dangerous substance; if it is handled or taken by a pregnant woman, it can cause serious birth defects, miscarriage, or stillbirth. So, I have to wear gloves and handle it very carefully since I am still of childbearing age. It only comes in capsule form, so since Collin can't swallow pills like an adult could, we were given other hints about how to get the drug into him. I use a pin to poke a tiny hole in the capsule, then quickly put the capsule into a spoonful of some sort of food (oatmeal, yogurt, Nutella, etc.) Then Collin just chews it all up and swallows it. The drug is very sensitive to light and oxygen, so it has to be given quickly once the hole is poked in the capsule. It also has some heavy duty side effects. It causes dryness of skin, eyes, nasal passages, etc., so I have to regularly administer lubricating eye drops, chapstick, moisturizing lotion, and possibly saline nasal spray, and make sure he drinks enough fluids. It causes extreme sensitivity to sunlight, so he has to wear sunscreen, a hat, etc. when going outside and he shouldn't be out for long. It can also cause things like muscle pain, joint pain, severe headache, mood swings, etc. After watching me give the drug to Collin and asking questions about it, Neya said, "You mean it's like poison?! Why are you giving it to Collin?" Smart girl. It's hard to give your child something that can make them so miserable, even though you know there's not much choice.

Collin's next MRI is this coming Wednesday (I can't believe it's been three months already). I'm trying not to be too concerned, because really he's doing so amazingly well and there's no reason to think it will show anything negative, but there's always some anxiety related to MRIs. Then he has his next hearing test Thursday, and therapies Monday, Tuesday, and Friday. Looks like another full week ahead. Please say a prayer that the MRI continues to be clear. I'll do my best to post results as soon as I know them!

Rainy days and Mondays...

2011-03-21T10:35:00.001-04:00

It's a dreary Monday morning, and I would like nothing better than to go back to bed and not deal with reality for a day. OK, maybe a week. Or longer. Please forgive me while I take a few minutes to whine so I can let go of things and get on with my day.

Last week, all I did was run from one appointment to the next, although it wasn't really different than most "normal" weeks for me. In an effort to make up all of my own doctor appointments that I missed last year, I finally went to the eye doctor last Monday morning. When I got home, there was just enough time for Collin and me to eat lunch, and then we were off to his therapy appointments that afternoon. Tuesday morning I went for my annual physical, and Tuesday afternoon Collin had a clinic appointment to have his bi-weekly labwork done. We got home from the clinic minutes after Bill picked Neya up from school to find out she had slipped on the sidewalk at the end of the driveway and fallen right on her front tooth. It was a tiny bit loose, and since it's a permanent tooth, I called the dentist. He saw her right away and did an X-ray; luckily the tooth is fine. Wednesday morning I spent two hours at a lab for a glucose tolerance test and other bloodwork since it hasn't been checked in over a year. Then Wednesday after school Neya had her seven year check-up, which thankfully showed that she is very healthy.

During Neya's check-up, I mentioned to our pediatrician that before Collin's eye surgery two weeks ago, one of the surgical staff mentioned that the EKG that was done in September to check Collin's heart before the high dose chemo and stem cell rescue showed that he has a hole in his heart. I had not been told anything about it following the EKG, so the physician's assistant told me it is a benign condition called patent foramen ovale; essentially it is a small hole in the heart that everyone has in utero, but normally it closes after birth. I ran it by our pediatrician to get his opinion; in the quick research I did on the condition, I read that in rare cases it can cause things like stroke or endocarditis, and I don't want Collin to have to deal with more than he already has to. Our pediatrician felt it would be a good idea to have Collin evaluated by a pediatric cardiologist, and made a referral for us. So Collin has a cardiology appointment at the end of April.

Thursday Collin had therapies and did very well. He had a great session with his Speech Therapist, and he is doing so well in PT that his Physical Therapist wants to see him once a week now instead of twice. He is so close to walking on his own, and just needs to keep practicing. Thursday night Neya wasn't feeling well, and Friday she stayed home from school with a fever and sore throat. I made another appointment with our pediatrician, which revealed she had strep throat and an ear infection. I had Bill take her, because I just couldn't face sitting in a doctor's office or waiting room one more time! Luckily we caught the strep very early, and I'm praying the rest of us don't get it. We made Neya stay in her room from Friday to Saturday night with movies and games, until she had been on the antibiotics for 24 hours and was no longer considered contagious.

Collin is doing pretty well following his eye surgery. I haven't noticed too much of a difference in the positioning of his eyes in the last week, but his right eyelid is now droopy and half closed. When I called to let his ophthalmologist know, he said some of the botox he had used to relax the muscle that pulls the eye in had probably seeped out of the muscle and is affecting the eyelid muscle. It will wear off over time, but now I don't know now well Collin will be able to see when I go back to patching his left eye like the doctor ordered. Collin had two therapy appointments scheduled for this morning, but I cancelled them because he was awake and vomiting between 2 and 3 this morning. Neya said she felt a bit nauseous when she woke up, so I kept her home from school again today to be safe. I will spend the day doing the pukey laundry, trying not to feel guilty and resentful when Neya tells me I love Collin more than I love her because I never do anything fun with her and I take better care of him than I do her, and trying to hold on to my sanity and not give in to the exhaustion that I can't seem to escape from.

Sunday, March 13 - Maintenance Chemo Round 1, Day 55

2011-03-13T04:54:00.002-04:00

Collin had his eye surgery Wednesday (March 9). We had to be at the hospital at 6 am; it was early, but since he couldn't eat anything after midnight, I was very glad not to have to wait until early afternoon. It's difficult to get a two-year-old to understand that he can't eat.

We arrived at the hospital, and registered with admissions. They took us to the pre-op area around 6:15. There was a lot of waiting, during which time a nurse went over all of the paperwork, and I tried to keep Collin happy and occupied by letting him listen to Wiggles songs on the iPad. The nurse got a kick out of him as he tried to sing and dance to his favorite songs while we waited. Finally one of the anesthesiologists came to talk to me. I told her that I wanted to escort Collin to the operating room like I had for his last few procedures. They always tell me it's not standard practice for them to allow a parent into the OR, but the doctor said that as long as one of the OR nurses was willing to escort me out to the waiting room as soon as Collin was asleep, she didn't have a problem with it. (In my humble opinion, having a parent escort a child to the OR, especially one who is very young and doesn't understand what is happening to them, makes the whole experience easier on everyone; the parent and child are way less anxious, and the doctors and nurses don't have to deal with a child who is screamng and crying because they are being separated from their parent in a scary situation!)

So when it was time for Collin to go to the OR (around 7:30), I put on the disposable scrub pants, top, shoe covers, hat, and mask, and I carried Collin to the OR while the physician's assistant wheeled the crib down the hall. I put Collin on the table, and talked to him and rubbed his back while they put a warm blanket around him. I hugged him and held his arms when it was time to put the mask over his face that would deliver the anesthetic gas that would put him to sleep. He always struggles against the mask because he doesn't understand what it's for, and the gas smells pretty bad, but at least my voice was the last one he heard before going to sleep. Then I gently layed him down, gave him a kiss, and thanked them for letting me be there before the nurse walked me to the waiting room.

Around 9:30, the ophthalmologist came to let me know the surgery had gone well. He was able to make the adjustments to tighten the muscles on the outside of each of the eyeballs, and inject botox into the muscles on the inside of each eyeball to help those muscles relax so the eyes could turn out. He said the botox will become effective over the next two weeks, and that the eyes would most likely turn outward too far before straightening. In about six weeks, the eyes should be in their straighter positions, and then he'll know if he'll have to go back in to make any further adjustments. He gave me a tiny tube of antibiotic eye ointment that needs to be administered to both eyes four times a day, and told me to continue putting lubricating drops in the right eye every two hours in between ointment doses to keep that eye from getting too dry since it still doesn't close or blink all the way.

When the ophthalmologist was finished talking to me, a nurse brought me to the Post Anesthesia Care Unit (I always emphasize that I want to be with Collin when he wakes up as well!). Collin started opening his eyes and coming out of the anesthesia pretty quickly. I expected him to be very groggy and fussy as he was after his last few procedures (the anesthesia used during a painful medical procedure is longer acting and different than the shorter acting propofol they use on Collin during his MRIs when they just need him to be still and there is no painful stimuli), but he woke up relatively quickly and calmly. They moved us to the recovery area, and it wasn't long before Collin was sitting up, talking, and taking sips of water. After a little while, the nurse took the IV out of his foot, and I was allowed to get Collin dressed and take him home, where he ate a big lunch and went back to playing as normal like nothing had been done to him.

We marveled at how much of a change there was in Collin's eyes immediately following the surgery. Right away both eyes were noticeably straighter. There wasn't a lot of swelling either. He occasionally has some bloody tears in the corner of his eyes, and his eyes seem to get very red in the inside corners at times, especially when he is tired. the ophthalmologist was so pleased with how Collin looked at his first post-op appointment Friday afternoon that he said he doesn't need to see Collin again until six weeks post-op unless anything changes. He also said I can go back to patching the left eye three hours a day starting next Friday, because Collin is still using the left eye more, and the right eye needs to be worked more to preserve the vision in it. Hopefully patching will be a little easier on both of us now that Collin won't be left staring at his nose for three hours with the uncovered eye!

Sunday, February 27 - Maintenance Chemo Cycle 1, Day 41

2011-02-27T16:54:00.002-05:00

Ever since last weekend, I have looked forward to writing about the fun we had at THON weekend. However, the forces that be have conspired against me all week, and I just have not had the time to sit and try to describe our first experience at THON. I will try again this week to do so, but in the meantime I thought I'd better try to get a regular update posted so no one thinks I've fallen off the face of the earth.

Being away last weekend put us behind on the normal household things that never end, like laundry, grocery shopping, etc. Add to that the time I spend out of the house taking Collin to his various therapy and other appointments each week, and it's very hard to catch up. Then on Thursday Collin ended up sick, and I all but gave up on trying to catch up.

When Collin woke up Thursday morning, he had a little unusual drainage from his left eye, but I didn't think too much of it. He had a great morning at therapy, and slept for two hours afterwards. That should have been my first clue; usually he sleeps for an hour, so I was surprised that he slept for two, but figured it was because he worked so hard in therapy. After the nap though, he had more drainage from his eye, and since he is scheduled to have surgery to correct the alignment of his eyes on March 9, my gut told me not let it go. So I called his oncologist's nurse and told her what was going on. She said if he still had the drainage Friday morning they would fit him in at the clinic after his pre-op appointment for his upcoming eye surgery.

Then around 5 pm he felt really warm to me, so I took his temperature. It was 102.2. So I called in and spoke to the covering oncologist. He spoke to Collin's oncologist and they decided to have Collin checked since he's still immuno suppressed, even though his last labs on February 14 were good. So, I put a suitcase in the car, and we headed to the emergency department. In the car on the way over, he vomited twice, and later he vomited twice more in the ED.

In the ED they took blood for labs and cultures, swabbed his eye for a culture, and swabbed his nose for a flu test. They gave him an antiemetic to stop the vomiting, then Tylenol to bring down his fever. They gave him some IV fluids, and a dose of IV antibiotic for his eye. The doctors didn't feel the eye infection would cause the high fever or vomiting, so they thought it was possible he had two things going on. The antiemetic and IV fluids perked Collin up and he was able to keep fluids down, so they discharged him around midnight. We went home and finally I got Collin cleaned up and into bed.

Then, because I wasn't sure about whether they'd want to see him in clinic Friday morning to follow-up, and whether or not we'd be able to reschedule the pre-op appointment, I had to clean the car and take apart the whole car seat, clean it up, and put a clean cover on it (thankfully I have 2 covers!) So at 2 am, in the dark and pouring rain, I miraculously managed to get the seat reinstalled so that we'd be ready to roll Friday morning if necessary.

Collin's fever hung around overnight even with Tylenol, but finally went down mid Friday morning. He had no more vomiting, was interested in eating and drinking, and kept food and liquid down all day Friday. Other than his left eye being a bit red and swollen, he didn't look or act sick. Thankfully we got the pre-op appointment rescheduled, and they decided we didn't need to go to the clinic, so we got to stay home Friday.

Then Saturday morning, he started with diarrhea, which continued all day. I lost track of how many times he needed to be changed, diapers and clothes, because of course it would immediately leak out of the diaper. Thank God for steam carpet cleaners, washing machines, and bath tubs! And then, as if it wasn't enough having to clean up multiple messes all day long, late Saturday afternoon Collin was standing holding on to the kitchen table, and gagged on the snack he was eating. Of course our dog Bailey was sniffing around Collin's feet looking for crumbs at that very moment, so when Collin gagged and threw up, it landed right on Bailey's head! So, back to the bathtub we went, only that time it was Bailey's turn for a bath.

Today Collin has still had some diarrhea. This upcoming week is another busy one, with a clinic appointment, multiple therapy appointments, and the rescheduled pre-op appointment (which they said takes about two hours!) I feel like I'm never home anymore. I also have to finish getting ready for Neya's birthday. Lately, by the time I manage to get through the day, I'm physically and mentally exhausted, and have been going to bed as soon as Neya and Collin are asleep. I'm not writing about this to complain, but to let you know if it takes me a while to answer email or phone calls, please know that it is just because I'm busy, not because I don't want to talk to anyone! =-)

Monday, January 31 - Maintenance Chemo Cycle 1, Day 15

2011-01-31T21:18:00.004-05:00

Last week, Neya came down with a nasty respiratory virus that kept her home from school for two days. By Friday, Collin and I started with the same symptoms. I kept a close eye on Collin's temperature, and when it got to 100.8 Friday afternoon, I decided to call the oncologist's nurse to let her know. She said if Collin's temp reached 101 over the weekend, I was to call and bring him to the ER for blood cultures, just to make sure his mediport wasn't infected. All weekend I kept checking his temp; thankfully it never made it to 101.

This morning we had a previously scheduled clinic appointment. The oncologist checked Collin over, and blood was drawn to check his counts. The visit was smooth and uneventful. We got home and had lunch, but after lunch when I gave Collin his eyedrops, he felt very warm to me, so I took his temp again. Wouldn't you know it was 101.2! I called the clinic to let them know, and just as I suspected, they wanted us to come back so they could draw more blood for cultures. Since Collin's mediport had been accessed this morning for the first blood draw, we couldn't ignore the slim chance that he picked up some sort of infection when the port was accessed. So, back to the clinic we went; thankfully we live close! They took more blood for cultures, and gave him an IV dose of antibiotics. His blood counts are pretty good, so since he has a bit of an immune system, he didn't need to be admitted to the hospital.

Unfortunately, Collin is very congested and has a bad cough because of all the mucus. Sometimes he will have a coughing fit that will end up causing him to vomit. Of course he had one of these episodes in the car as we were leaving the clinic. I pulled over and ran around to his side of the car, but I wasn't quite fast enough to avoid a big mess. I am continuing to watch his temperature; this evening it went up to 101.9. I'm hoping it comes down soon and stays down. Depending on what the weather brings tomorrow, I'm hoping to avoid another trip to the clinic!

Our little friend Caiden, who is only a few months yonger than Collin, has successfully completed his stem cell transplants, and will be going home tomorrow! Please continue to keep him in your prayers; his parents face a very tough decision about the next step in his treatment. Please also continue to pray for our other little friend Sean, who is currently in the hospital for his stem cell transplants. And if it's not too much to ask, please add two more great kids and cancer warriors to your prayers, Hailey and Zach. They have also been through a lot. No child should ever have to go through what any of these kids have been through; cancer really sucks!

Donations Welcome!

2011-01-27T09:25:00.006-05:00

The Penn State IFC/Panhellenic Dance Marathon, affectionately referred to as THON, is the largest student-run philanthropy in the world. It began in 1973, when a small group of dedicated Penn State students held the first Dance Marathon. That year, 39 dancer couples participated and raised $2,000. Since then, THON’s presence in the Penn State community has grown exponentially. THON now has 15,000 student volunteers, 700 dancers, and is a year-long effort by extremely dedicated students that raises funds and awareness for the fight against pediatric cancer. THON has raised more than $69 million, benefiting The Four Diamonds Fund at Penn State Children’s Hospital. See the THON 2011 video below:

The Four Diamonds Fund was established by Charles and Irma Millard after the death of their son, Christopher, who was diagnosed with cancer at the age of 11. Because of THON’s support, The Fund is able to offset the cost of treatment that a family’s insurance won’t cover, as well as provide for other expenses that may affect the welfare of the child. It also supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute. Below is a video about the Four Diamonds Fund:

This is our first year as a THON family. We were paired with one of the many student organizations that make up THON, and our organization (Penn State Altoona campus' THON group) has used Collin and his fight against brain cancer to be their inspiration to raise as much money as possible. There are six students from Altoona THON who will be dancing for Collin during this year's THON weekend, February 18-20. The dancers will dance for 46 hours straight, without sitting or sleeping. We are very excited to attend our first THON, and will be there all weekend to cheer them on.

Please consider joining the fight against pediatric cancer by making a donation to THON. Any amount is a big help. Donations can be made easily and securely online. Click this link to go to THON’s secure donation page. Complete the required information. To make sure that Collin's fund-raising group is credited with your donation, under the subtitle “Gift Amount/Designation” please choose Altoona from the drop-down box. If you prefer to send a check, it can be made out to Penn State Dance Marathon, and you can write Altoona #165 on the memo line. Checks can be mailed to Penn State Dance Marathon, 210 HUB, University Park, PA 16802.

Together, we’ll make a difference in the life of a child.

FTK....For The Kids!!

What the Four Diamonds Fund Means to Us

2011-01-27T09:24:00.003-05:00

Every year, the radio station I listen to does a fund-raising drive for a well known hospital that treats kids with cancer. I didn't think that any small amount I might be able to contribute would make a difference at all, and the stories of kids being diagnosed with cancer, undergoing treatments that would make them sick, cause their hair to fall out and prevent them from just being kids, or worse the stories of the kids who die because of cancer, were just too hard to listen to. They would turn me into a sobbing mess on my way to where ever it was I was driving. I naively thought that cancer was something that happened to other people's kids, that it would never happen to mine. Eventually I couldn't bear to listen anymore, and I'd turn the radio off. Last April, my life was changed forever when my 16 month old son was diagnosed with cancer. Suddenly we became one of those stories I couldn't bear to listen to.

There are no words that can describe what it feels like to be told your child has cancer. It's almost impossible to breathe. It's impossible to understand how a sweet, innocent child can have cancer. Collin didn't do anything to deserve cancer. He hadn't had a chance to live his life yet; how was it possible that he may never get that chance? Suddenly, there was very little we had control over. We lived minute to minute. All we could focus on was Collin; we couldn't think about anything else.

During the first few days in the hospital, a social worker came to talk to us about our insurance and other financial resources. She mentioned the Four Diamonds Fund and gave us some paperwork to fill out. She explained that one way the Four Diamonds Fund helps children with cancer who are treated at Penn State Hershey Children's Hospital is by covering whatever cost isn't covered by insurance. It wasn't until that moment that the potential financial impact of this terrifying situation that had been thrust upon us began to sink in. I turned to the social worker with tears in my eyes and said, "You mean we're not going to lose our house?"

The fact that an organization exists that provides that level of assistance seemed unreal to me. But the Four Diamonds Fund is very real. When parents are faced with the possibility of losing a child to cancer, they shouldn't have to worry about whether or not they can afford the care their child needs. Not only does the Four Diamonds Fund provide financial assistance to pediatric cancer patients at Penn State Hershey Children's Hospital, it provides funding for many of the staff that provide valuable care to these children. Collin's music therapist was one of the first people to get a reaction from him that showed us he was still Collin after the immediate effects of brain surgery left me wondering if he would ever be himself again. To see him calmed by music, to see him interact by reaching for an instrument for the first time, was a priceless moment that left everyone in the room with tears in their eyes. The Child Life Specialists who helped us talk to our six-year-old daughter about cancer without scaring her, and who provide so many wonderful activities that allow kids to just be kids despite being in the hospital, are amazing. The social workers, the music therapist, the child life specialists, and many other invaluable staff are supported by the Four Diamonds Fund. And on top of all of the wonderful people and services I have mentioned, there is research being done every day at Penn State Hershey Children's Hospital, research that will someday lead to a cure for childhood cancer. This research that allows children and their families to hold on to hope wouldn't be possible without the Four Diamonds Fund.

After spending the majority of time from April 22 to November 13, 2010 in the hospital undergoing brain surgery to resect the tumor, six rounds of chemo, and a stem cell rescue, Collin is home and doing amazingly well. He is learning to talk, and walk. He is receiving physical, occupational, and speech therapy a few times a week, and just started six months of maintenance chemo that we give him at home. There are still challenges ahead for him, but he seems totally unaffected by his journey. It's like being sick, long hospital stays, losing his hair, undergoing regular blood draws and MRIs is all normal to him, because really that's what he's known for half of his life. He just takes it all in stride and does what he has to do. He is the strongest person I know, and every day I am thankful that he is still with us. I hope he will have the chance to grow up and do something important with his life.

We have had many, many blessings throughout this journey, and for them we are grateful. The Four Diamonds Fund and THON are two of these blessings. We are looking forward to attending our first THON next month. It is difficult to adequately express the gratitude we feel for all of the efforts put forth by each and every Penn State student involved in THON. The amount of love we have received from the THON family, and the result of their year-long efforts to raise money for the Four Diamonds Fund are truly inspiring.

Go State-Beat Cancer!! FTK!!

With Love and Gratitude,
The Kratzer Family
Jenn, Bill, Neya (6 years) & Collin (2 years)

Friday, January 21 - Day +100!!! Maintenance Chemo Cycle 1, Day 5

2011-01-21T23:59:00.002-05:00

Today is 100 days since Collin had his stem cell transplant, and tomorrow is nine months since he was diagnosed. It's hard to believe how fast the time has gone. In the beginning of this journey, I could only bear to look forward minute by minute, and now looking back, it's amazing to see how far Collin has come. He is my hero! Words can't describe how thankful I am that he's doing so well, but in a way I'm afraid to celebrate yet because I know things can change in a heartbeat. I'm doing my best to enjoy every moment I have with him, because I know what a gift each one is!

Monday, January 17 - Day +96; Maintenance Chemo Cycle 1, Day 1

2011-01-17T23:46:00.001-05:00

Collin started his 6 months of maintenance chemo tonight. The drug he's getting is called Temodar, and he's had it before. It may cause nausea and vomiting, so Collin's oncologist suggested it be given at bed time so he won't be bothered much; she also advised me to give him Zofran (an anti-emetic) at least an hour beforehand. The drug also should be given on an empty stomach, either one hour before or two hours after a meal, and should be given about the same time every day. Since Collin goes to bed at 8:00 pm, my goal was for him to be finished eating dinner and having his other medications at 6:00 pm, so I could give him the Temodar at 8:00 pm before he went to sleep. Well, you know what they say about the best laid plans...dinner ran late, and then when I gave Collin his other medications, he threw them up (there is one that makes him gag at times, and then he throws up). So, I spoke to the oncologist on-call, and he said I could re-dose the meds that Collin threw up. So I did, and then at 8:30 pm I gave him the chemo. I was nervous, because the last time I had to give Collin chemo, I put it in his feeding tube, and at least I knew he wouldn't be able to spit it out; I felt like there was less of a chance that something could go wrong. Without the feeding tube, I felt like I had less control.

So at 8:30 pm, I brought Collin downstairs, got the chemo out of the fridge (most people have normal things like milk, butter, and eggs in their fridge!), laid Collin on the changing table, put on gloves, took a deep breath, and slowly squirted the chemo into the back of Collin's throat. It was over in a second, and he didn't even try to spit anything out. One day down, only about one hundred seventy nine to go!

Friday, January 14 - Day +93

2011-01-14T22:11:00.002-05:00

Yesterday Collin had his latest MRI. I was worried it would be a rough morning since he wasn't allowed to eat because of the anesthesia (lately he's been eating like he's making up for lost time) but luckily he handled it pretty well. The MRI was scheduled for 10:00 am, which was also helpful (and certainly better than being scheduled for 1:00 pm and having to deny him food for longer). Since his Broviac is no longer there to inject Propofol into, they used gas to put him to sleep. The gas doesn't smell good, and he fights the mask as it is put over his face, but luckily he goes under quickly. Once he was asleep, they inserted an IV and drew blood for labwork, and then took him and placed him in the MRI machine. It took about two and a half hours since they scanned his brain and spine (it amounts to a few hundred images taken) and afterwards, Collin woke up very quickly and calmly. I was not able to get results before we left the hospital, so I figured I would have to wait for them until his clinic appointment this afternoon, and was trying to assume that no news is good news. Then, about 8:30 last night, the phone rang, and it was Collin's oncologist. She said, "You didn't think I'd make to you go to sleep without knowing anything, did you?" She then told me everything was clear! It was the best news we could have hoped for!

Today Collin had appointments with both his oncologist and his neurosurgeon. The neurosurgeon agreed that the MRI was great, and both doctors seemed very pleased with how Collin is doing. What a huge relief! Over the next six months, we will continue to closely monitor the right side of Collin's face; if it doesn't show any improvement by then, we can consult a plastic surgeon to discuss surgery to stretch and re-connect the nerve that controls facial movement. Also over the next six months, Collin will be given maintenance chemo to give him the best chance possible of no relapse. The maintenance chemo will begin Monday, and we will give it orally at home. Three of the drugs are ones that he has had before: Temodar, Cytoxan, and Etoposide. The fourth, Accutane, is new to Collin. During the maintenance chemo, Collin will be seen in the clinic every other week to be monitored, have his blood counts and other labs checked, etc. Hopefully the maintenance chemo won't cause a lot of vomiting, but he will be started back on the anti-emetic Zofran just in case. And hopefully Collin will cooperate with taking the chemo by mouth so we don't have to put the feeding tube back in!

On Wednesday, Collin had his best outpatient speech therapy appointment yet. At first he wasn't too willing to participate and verbalize much, but then something clicked and he started talking more. He participated with such enthusiasm it brought tears to my eyes! He went on to have a great physical therapy session as well, and his PT feels he'll be walking soon!

Wednesday, January 12 - Day +91

2011-01-12T07:00:00.002-05:00

Collin has had some great therapy sessions this week; his enthusiasm and willingness to participate are fun to see. Yesterday in OT and PT he was eager to "play" and even initiated his own agenda; he has figured out how to climb up onto the little bench he usually stands at and leans on. He now climbs up onto the bench and then sits up tall, puffs out his chest, and looks all around with his big half-grin, clearly very pleased with himself. Of course he has no awareness of safety, so we have to make sure he doesn't fall off and help him get down by turning around and putting his feet down first. He's also getting more confident when standing, and lets go of whatever he's holding on to for short periods of time. His physical therapist feels it may not be too much longer until he starts to walk on his own.

He's also been eating so well; he'll eat almost anything I put in front of him (his new favorite as of dinner last night is raw sliced bell peppers sticks with ranch salad dressing) and sometimes he'll eat so much I wonder where he's putting it!

I've no longer had to worry about Collin throwing up; it rarely happens, and when it does, it's usually a result of gagging because he takes too big a bite of food. That being said, he suddenly had two eisodes where he was just sitting on the floor and vomited for no obvious reason, just out of the blue, one yesterday and one the day before. I'm trying really hard not to worry. I'm trying really hard to just focus on how well he seems to be doing all around, with therapy, how he's eating, etc. and that he is continually making progress in his recovery. I'm trying really hard to ignore the little voice in my head that wonders if two episodes of vomiting for no reason means that something is putting pressure on that area of his brain again.

His three-month MRI is tomorrow. Please say an extra prayer that it will show no evidence of disease. I hate living in fear...

Sunday, January 9 - Day +88

2011-01-09T23:13:00.002-05:00

Collin and I have a busy week coming up! He has two therapy appointments each day Monday, Tuesday, and Wednesday. On Thursday he has his next MRI, and on Friday we have clinic appointments with his oncologist and neurosurgeon. He's doing so well and isn't exhibiting any symptoms that would indicate any problems, so the rational side of me says there's no reason to think the MRI would show anything negative; but there's another part of me that worries that the fact that he is doing so well is too good to be true and I should be prepared for the worst. I know every parent of cancer warriors feels overwhelming anxiety before each MRI (dubbed "scanxiety"); I'm trying to think positively for Collin and not to let worry get the best of me.

I have spent the last few weekends trying to get our house back in shape. I have cleaned out and/or reorganized the basement playroom and storage areas, and have moved on to closets in the rest of the house. I have thrown some things away, and passed a lot of other things on to others who can use them. I have been able to put away most of the medical supplies that seemed to take over large areas of space in certain rooms; once I'm sure we won't need them anymore, I will get rid of them as well. I spent 75% of 2010 dealing with cancer and very little else, so now I feel like I'm taking back a little of the control that cancer took away. It's a nice feeling.

Thursday, January 6 - Day +85

2011-01-06T22:45:00.002-05:00

Collin had another hearing test today to monitor his hearing, since the chemo he received can damage high frequency hearing. The test showed some loss in his right ear, but it's not enough to affect his learning to talk, and he doesn't require a hearing aide at this time. The plan is to continue to monitor his hearing, so he'll have another test in three months. He has his next MRI next Thursday, and then we will meet with both his oncologist and his neurosurgeon in the clinic on Friday.

I have mentioned two other little guys, Caiden and Sean, who we met in the hospital and are being treated with similar courses of chemo as Collin. They are one-and-a-half and two years old respectively. Both boys will be undergoing stem cell transplants within the next few weeks. Please keep them and their families in your prayers!

Monday, January 3 - Day +82

2011-01-03T21:08:00.004-05:00

I have realized that I have neglected to mention the fact that Collin doesn't have his feeding tube anymore. On Saturday December 11, I gave Collin his morning meds by mouth instead of through the feeding tube to see if he'd take them willingly. As an infant, he would open his mouth like a little bird when he saw the syringe of reflux medication and swallow it without hesitation, even though it didn't taste very good. Luckily, he was still willing to take his medicine as easily, so I took his feeding tube out that morning in December. I knew that if he didn't cooperate with his medicine, or if he didn't start to eat better, I could always put the tube back in. Thankfully, he continues to take his medicine like it's no big deal (he could teach his sister a thing or two about that!), he is eating normal food, and the amount he eats every day has returned to what it was before he got sick last year. It's really nice to see him without a tube in his nose!

Over the last few weeks, we have noticed Collin moving his tongue on the right side of his mouth, pushing his tongue against the inside of his right cheek. He is also chewing his food on the right side of his mouth more often. I mentioned this to his Speech Therapist, and she wondered if it was possible that he is starting to get back sensation on the right side of his face. He has had no expression on his right side; when he smiles, it's only the left side of his face that moves. But this morning when he smiled, there was a little dimple on his right cheek! I remember when he started to regain movement on the left side of his face, the first change I noticed was a little twitch above the left corner of his mouth. It was exremely subtle at first, but it was there. So after seeing that dimple this morning, I am hopeful that he is starting to regain sensation and movement on the right side of his face! His hair, eyelashes, and eyebrows are also growing in, very quickly actually. He's beginning to look more like himself!

Tuesday, December 28 - Day +76

2010-12-26T22:16:00.004-05:00

I have been meaning to do an update for over a week, but by the time I've gotten Collin to sleep I am drowsy myself, and sleep has won out. We are having a great visit with my parents, and between Collin's appointments and the activity of day-to-day life, we have been keeping busy. So here are the highlights since my last update...

Thursday, December 16
Collin and Neya had been sick on Wednesday, and Collin and I had spent Wednesday afternoon in the clinic. On Thursday, both kids were feeling better, so we felt it pretty likely that they both had the same 24-hour bug. Even though Collin's blood cultures were still negative for an infection in the mediport, we had to return to the clinic for another antibiotic infusion just to be safe. Luckily we weren't there as long as we were the day before, and Collin spent the time watching Elmo and Thomas dvds. When it was time for us to leave, all of the nurses from the clinic came into the room we were in, sang Happy Birthday to Collin, and presented him with a birthday banner and a gift. It was so nice!

Friday, December 17
Collin had a speech therapy appointment in the afternoon. He participated more than he had been so far and had fun earning stickers when he completed a task. It's nice to see him warming up to his speech therapist and interacting more with her.

Saturday, December 18-Collin's 2nd birthday!
We had a little birthday open house for Collin Saturday afternoon. We had family and a few close friends over, and I invited his medical team over for cake because without them Collin wouldn't be here to celebrate any more birthdays. Some of his nurses came by, as well as one of his occupational therapists and his oncologist. It was a very happy day, and a wonderful celebration!

Tuesday, December 21
Collin had an appointment with the ophthalmologist Tuesday afternoon. He was pretty happy with how the corneal abrasion is healing, and has decided to do surgery on Collin's eyes in February. The surgery is called a Bilateral Medial Rectus Recession. The eyeball has muscles attached to it, on the top, bottom, and either side; they move the eye up, down, and side to side. The ophthalmologist will detach the outside muscle from each eye and reattach them farther forward on the eye, so that the muscle will then turn the eyeball farther outward. The surgery will take approximately an hour and a half, and the recovery time will be six weeks. The ophthalmologist will monitor the results of the surgery, and may need to perform another similar procedure farther down the road on the muscles that pull the eye inward.

Thursday, December 24
Poor Neya came down with a nasty cold and a fever of 102, and was very disappointed to miss her Christmas pageant and Christmas Eve Mass. Collin's oncologist said I could take him to mass on Christmas Eve, and he was an angel through the whole service.

Friday, December 25
We had a wonderful, happy day being together with family. I was so thankful that Collin is still here with us, and kept thinking of the many families who were having to spend the day in the hospital with their child, and the families who had to get through this season missing a child whose battle with cancer has been lost. My heart breaks for them, and they are always on my mind and in my prayers.

Monday, December 28
We had the honor of hosting a visit from some of the wonderful members of our THON organization, Altoona THON. We had a great time getting to know each other, and learning more about the fundraising efforts of these selfless Penn State students. We are so excited to attend THON weekend in February; I know it will be an amazing weekend!

Today we are having a relaxing day at home. Neya is still sick, so she has a doctor's appointment later this afternoon. Thankfully so far Collin hasn't caught whatever it is she has, and I hope it stays that way. I've always hated this time of year when kids are always bringing some bug home from school, and it is more stressful now hoping that Collin doesn't get sick. We have had a great visit with my parents, and are sad to see them leave tomorrow!

Wednesday, December 15 - Day +63

2010-12-15T22:56:00.000-05:00

My parents flew in from Houston today and will be with us for the next two weeks. My plan for today was to get Neya off to school, make vegetable soup in the crock pot, get the room ready for my parents, and finish some laundry, all before taking Collin to his speech therapy appointment at 4 pm. But you know what they say about the best laid plans...

At 2:30 this morning Neya came into our room crying. She said her head hurt and her throat was sore. I took her downstairs to take her temperature, which was 102. I gave her some children's Ibuprofen and got her settled back to bed. But a few minutes later she said she had to throw up, and ran for the bathroom. Sure enough...

At that point Collin was awake and screaming because I had left the room (he is still sleeping next to me in case he needs me during the night; we both sleep better that way). Neya wanted to come sleep in our room as well, but we didn't want her to be near Collin since she was sick, so Bill went to stay with her and I got Collin back to sleep. I took Collin's temperature, and thankfully it was 98.1. I managed to doze back off to sleep.

Around 7:00 am, Neya came in and told me she had diarrhea. Then Collin woke up, so I checked his temperature again, and now it was 100. I rushed around trying to get Collin and myself ready for the day, make sure our bags were packed, and put clean sheets on the bed for my parents. Collin and Neya were downstairs with Bill, and when I got downstairs Bill told me Collin had thrown up. I changed him, took his temperature again (it was now 101) and called the Hem/Onc office at Hershey Medical Center. They told us to come in to the clinic right away for blood cultures to be done to make sure that the new mediport wasn't infected. Then I called our pediatrician's office about Neya, and they said they could see her right away. So Bill took Neya to the pediatrician's office, and after I changed Collin's clothes again (he threw up a second time), I took Collin to the clinic.

Blood cultures were taken through the mediport (Collin did well again, just a little whimper as the port was accessed) and Collin got some IV fluids and an infusion of antibiotics. Since his ANC is 2700, we were allowed to go home (I expected to be admitted to the hospital, so going home was a nice surprise!) We will have to go back to the clinic tomorrow for another antibiotic infusion just to be safe, but it appears that Collin has the same (hopefully 24-hour) virus Neya has. By this evening Neya seemed to be feeling much better, so hopefully Collin won't be far behind. I managed to get home and make vegetable soup in plenty of time, and my parents arrived safely. I'm glad the day has ended better than it began!

Friday, December 10 - Day +58

2010-12-10T15:45:00.004-05:00

This week has been a busy one!

Monday Collin had his mediport put in. His stomach had to be empty before anesthesia, so I turned his tube feed off at 4:30 am, and made sure he had his meds and any clear liquids he wanted by 6:30 am. On the days where Collin can't eat in preparation for anesthesia, the rest of us make sure we don't eat in front of him since it wouldn't be fair to him. We checked in at the hospital at 9:30 am, and we were brought into a little room in the Same Day Unit where I changed Collin into a hospital gown and the nurse, anesthesiologist, and surgeon come see us, have us update medical information, sign consent forms, etc. It was the same room we were in a few weeks ago when the Broviac was removed, and Collin recognized it and remembered the little TV right away. He was perfectly happy to watch and play with the TV while we waited. I like to stay with Collin until he is asleep, so I put on scrubs and went with him to the operating room. This time I asked them to skip the Versed (a drug that makes kids drowsy and less anxious before a medical procedure) that was given to Collin before the anesthesia when the Broviac was removed; as long as I stay with him he doesn't get upset, and I was hoping he would come out of the anesthesia quicker and calmer after the procedure than he did when the Broviac was removed. In the OR I put him on the table and stayed with him until the gas put him to sleep. Later after the mediport was put in and Collin was taken to the Post Anesthesia Care Unit, I went to be with him, and he woke up as I got there. He was still a bit agitated for a while, but he did wake up quicker this time. We were moved into another room in the Same Day Unit, and once a chest X-Ray showed the mediport was in the proper place and Collin could drink some juice and keep it down, his IV was removed and we were allowed to go home. Despite being at the hospital for most of the day, everything went smoothly, and Collin didn't seem to be in any pain that evening at home. The mediport is a small round device that is implanted under Collin's skin on the right side of his chest. There is a tube on the back of the device that goes into a vein, just as an IV would, and stays in the vein. Whenever blood has to be drawn or medicine has to be given intravenously, a needle is put through the skin into the mediport to access the vein. It's much better than having to be stuck multiple times to have an IV placed, there are no tubes sticking out of the body that can become infected, and unlike a Broviac, you can take a tub bath or swim with a mediport.

On Tuesday Collin had an 8:00 am speech therapy appointment. The speech therapist is working on building a raport with Collin, and will be working on cognition and speech. Collin didn't want to complete the task the therapist was having him do, so he spent a bit of the session upset, but he eventually finished and proudly carried his stickers with him for the rest of the morning. Following speech therapy, Collin had physical therapy. He is getting better at lowering himself back to the floor after he pulls himself up to stand, and can cruise side to side at a raised surface. He is still walking with assistance, but not independently yet. Tuesday afternoon, we went back to Hershey for an ophthalmology appointment. The sutures from the lateral tarsorraphy had disolved, and Tuesday morning when Collin woke up, his right eye was open all the way. The abrasion is mostly healed, but the ophthalmologist wants to do another lateral tarsorraphy to protect the eye since it still doesn't close all the way. He wants the tarsorraphy to be more permanent, which involves abrading the eyelids so they heal together; then the procedure wouldn't have to be repeated multiple times, and can be reversed when the time is right. At the same time, he would inject Botox into the muscle to relax it and allow the eye to turn outward; then Collin would be able to see better out of the right eye while the left eye is patched. I asked why he doesn't just do the surgery that would permanently turn the eye out, but he had a few reasons why he doesn't feel the time is right yet. Despite his answers to my questions, I don't understand his reasoning, and left his office a bit frustrated.

Wednesday Collin had occupational therapy. He participated well, and was chattering during the session. He was also behaving like a normal two-year-old, throwing some little toys with a big grin in his face instead of doing what the therapist wanted him to do. It was nice to see him exhibit normal toddler behavior! Thursday Collin had speech, physical, and occupational therapy again, so we were on the go all morning.

Today Collin had a clinic appointment. His oncologist is going to set up another hearing test so that if the high dose chemo caused any low frequency hearing loss we can have hearing aids fitted to help with learning speech. She is also going to invite the ophthalmologist to discuss his plans with the rest of the treatment team (oncologists, neurosurgeons, radiologists, etc.) to make sure they are all working toward the same goals. I am going to reduce Collin's tube feeds to one can at night and then try to wean him off completely. At the same time I will start getting him to take his medicine by mouth so that once he doesn't get tube feeds anymore, the feeding tube can be taken out. Collin will have his next MRI mid January. Then Collin had labs drawn today, so his mediport was used for the first time. I had put Lidocaine cream on the area before leaving home this morning, so the area was numb. The counselor from Child Life used small toys and bubbles to distract Collin while the nurse put the needle in and drew the blood for the labs. I was nervous when I saw the needle, but Collin didn't even flinch! I was so relieved! He didn't cry until I tried to get him dressed again, because he didn't want to stop playing. The visit couldn't have gone better!

Everyone seems pleased with how well Collin is doing, and I think he's doing great! I find myself feeling over-the-moon happy, but then I get nervous that things are going too well, because I know that things could change in an instant, and just because he's doing well right now is no guarantee that the cancer won't come back. We need a cure!

Sunday, November 28 - Day +46

2010-11-28T23:05:00.002-05:00

Collin has been doing well since coming home two weeks ago. He's off the TPN, and the Broviac has been removed from his chest. His mediport will be inserted December 6. He is tolerating his tube feeds at 45 mL per hour without difficulty, so now I can just run them over night while he sleeps and he doesn't need to be connected to the feeding pump during the day. He is eating and drinking more, and while I'm not sure that he's eating enough to sustain him without the tube feeding, he's headed in the right direction. So far I have kept him on the nectar-thick liquids since he does so well with them, but he is now handling all food textures well again as long as the bites are small. He is crawling all around, pulls himself up to stand, and now bends his knees to sit back down (instead of dropping back onto his rear end). He has not vomited in a while, and the diarrhea finally seems to be improving. On Friday he had his first tub bath in seven months. At first he was terrified, but I held on to him until he was comfortable, and by the end of the bath he was having fun splashing the water the way he used to. He is growing eyelashes, and they are starting to darken. His eyebrows and hair are also starting to grow in, but so far they seem to be coming in white. I have been told his hair may come back a different color or texture, at least at first, and I can't imagine seeing him with hair that is a different color than what it used to be. The corneal abrasion on his right eye seems to be healing nicely, and he is getting used to having his left eye patched again. He has had a slight runny nose over the last few days, but thankfully has not had any fever.

Our schedule is now filling up with appointments for outpatient occupational, pysical, and speech therapy. These appointments, as well as the occasional clinic appointment, are really the only times Collin leaves the house. Since it is the beginning of flu season, we don't want to chance him getting sick. It is very difficult to get him to keep a mask on when we are out, although I can't really blame him! He will also receive therapy services at home through Early Intervention soon. I think he will make good progress, especially now that he won't have hospital stays for chemo to hold him up!

Thursday, November 25 - Day +43...Thanksgiving

2010-11-25T00:19:00.004-05:00

This year I am incredibly thankful for so many reasons. I am thankful to be able to celebrate this Thanksgiving with my husband and BOTH of our children. My heart goes out to the many parents who are facing this holiday season (and life) without a child because of cancer. Please keep them in your prayers.

I am thankful for our families, who have been so loving and supportive throughout the past seven months. We love you all so much!

I am thankful for our friends, old and new, and even the ones we haven't met, who have prayed, visited, fed us, and sent messages of support, encouragement, hope and love. Thank you for helping hold us up throughout the last seven months!

I am thankful for the doctors, nurses, and therapists who have cared for us, educated us, cried with us, and celebrated with us. You have become like family to us, and we are forever grateful to you for everything you have done for us!

Happy Thanksgiving everyone!

Tuesday, November 23 - Day +41

2010-11-23T22:00:00.000-05:00

Collin was added on to the surgery schedule today to have his Broviac removed. We had to check in at Admissions at 9:30 am, and we didn't get home until nearly 4:30 pm, but despite spending the day waiting, things went pretty smoothly. The actual removal didn't take long at all. It took Collin a little longer than usual to wake from the anesthesia, and when he did, he was agitated for a while, which wasn't the norm for him. But after a while I was able to offer him some juice, and he was able to keep it down. Once the IV was removed from his arm he was happier, and we were able to go home. He only has some little steri-strips on his chest, which will eventually come off by themselves, and on Friday he will be able to have his first tub bath since April! I can't wait to see his reaction! His mediport will be inserted on December 6.

Monday, November 22 - Day +40

2010-11-22T22:00:00.001-05:00

Collin's clinic appointment this afternoon went very well. He was in a very happy mood, and was waving to everyone who said hi to him. Our oncologist said this was the best she's ever seen him since she met him in April. He waved to her when she came into the exam room, and even held onto her hands and walked around the tiny room with her. Despite the fact that the nurse got one of the single-lumen repair kits and was going to get creative with it to fix Collin's line, the doctor decided to just have it taken out since he's doing so well. She said she usually ends up just taking them out because they get a hole in them or get infected, so she wanted to remove Collin's before it becomes infected. Since he had just eaten lunch and didn't have the empty stomach needed for anesthesia, the surgery to remove the Broviac will be done tomorrow morning. I am surprised to realize that I have mixed feelings about this step! I remember how much I hated the Broviac in the beginning, and hated Collin being hooked up to IVs all the time. But somewhere along the line, without even realizing it, I came to appreciate and rely on the Broviac because it meant Collin didn't have to be stuck with needles all the time, and it allowed him to easily have all the medications he needed. Taking care of it, doing the dressing changes, flushing both lumens every day, etc. became routine. So as much as I am excited to finally say "bye bye tubies!" (which Collin was repeating during his sponge bath tonight) and see Collin finally get to have tub baths again (one more step toward normalcy!) there is a little part of me that will miss the darned thing! Of course, in a few weeks, after he is healed from the surgery tomorrow, he will get his new mediport put in so that blood draws and eventually maintenance chemo can be done easily, but from what I understand the port will require less care, and he'll still be able to get in the tub with it!

Saturday, November 20 - Day +38

2010-11-20T16:00:00.002-05:00

The last few days have gone pretty well. We are seeing how Collin does without the TPN, and already I notice a difference. The vomiting and diarrhea have decreased, and he has more interest in trying to eat, especially lunch and dinner (I don't think he's very hungry for breakfast since he gets the tube feedings over night). I have slowly increased the rate of the tube feeds, and he is up to 30 mL/hr now. He's getting two cans (250 mL each) overnight, which is what he used to get; it's just still at a slower rate, but I think soon he'll be back to the 50 mL he was used to. Now that he's not getting the TPN, it's nice not having to carry two portable pumps over my shoulder in the evening as I carry him through the house, and once he's back up to the 50 mL/hr, I can just give him the tube feeds while he is sleeping, so I won't have to carry around the feeding pump either.

Wednesday Collin started back up with the outpatient OT. Thursday the Early Intervention team came back to do an assessment so they can get home therapy services started for him as soon as possible. Today we waited for an hour and a half for the ophthalmologist to take a five minute look at Collin's eye; thankfully the abrasion is healing nicely, and we can now go to every three hours with the ointment (instead of every two hours). The ophthalmologist talked about injecting Botox into the muscle that is causing Collin's right eye to turn in so much. About a week after the injection, the muscle would relax enough to allow the eye to turn out. The effect would last for about three months, and would enable the right eye to see better when the left eye is patched. The injection would be given under anesthesia, so it may have to wait until the next MRI, which will be done in January.

Last night as I was doing the nightly flush of the Broviac lumens, I noticed one lumen has a small hole in it. Of course it wasn't the one that was used to draw labs earlier Friday in the clinic, where it could have been addressed during normal daytime hours. I called the hem/onc unit desk and spoke to our nurses there, because obviously a hole in the line is a possible route of infection. One of the attending physicians was right there, and he consulted Collin's primary oncologist. Since Collin didn't have a fever, and because most likely at that time of night the ER pediatric surgical residents wouldn't necessarily be familiar with how to repair the line, I was told to chloraprep (clean) the outside of the lumen, flush it with heparin, clamp the line above the hole, and tape sterile gauze around it, then come into the ER early Saturday morning so it could be repaired and he could have blood cultures taken and be given a single dose of IV Vancomycin (antibiotic). So Collin and I went to the ER this morning. We waited for quite a long time for the pediatric surgical team to finish with an appendectomy; then they came to see us. After making a few calls to central supply, the OR stockroom, etc., they determined the hospital doesn't have a repair kit for a double lumen catheter, only single lumen catheters. That the hospital doesn't have a repair kit for a double lumen catheter that is commonly used in hem/onc patients, that was put in by them, whether they don't stock it or it doesn't exist, blows my mind. Since the only other option would have been to take Collin to the OR and surgically replace the whole catheter, they told me to keep it clamped and not use it, and then talk to our oncologist at our clinic appointment on Monday. After being there for four hours, I was ready to leave at that point, but they wanted me to wait longer to make sure that we didn't need to have the IV dose of Vancomycin. I waited about fifteen minutes longer, and then told them I wasn't waiting anymore, since I had already wasted four hours of my time for no reason, it would have to be infused over two hours, the broken line couldn't be used since it couldn't be repaired, and the surgical attending didn't feel it was necessary. They had me wait another minute, and finally got the answer that it wasn't necessary, but they were to draw a blood culture before we left. Finally we were able to leave, but I was very annoyed. The surgical attending didn't seem to feel it was a big deal that we were down to one lumen if the Broviac is only being used for blood draws, but I had always been told that the lumens could be repaired when they got holes in them (which isn't unheard of for something that is used so much), and clearly the hem/onc doctors and nurses have seen them repaired before. Since Collin is only a month past transplant and has only been home for a week, and if he gets an infection that he needs to be hospitalized for, having only one lumen could make things difficult, so to me it's important.

To make matters more irritating, when I disconnected his feeding pump and flushed the feeding tube this morning in the ER as we waited, I found a leak in the end of that tube as well. It is the area of the tube that is often held kinked when giving multiple syringes of medication so that the medicine doesn't leak back out as one syringe is taken out of the tip of the tube and the next one can be inserted. Again, it's a tube used hard multiple times a day for a long period of time, so it's not surprising. It was just one more thing to deal with, so when we got home I took out the old feeding tube and replaced it with a new one. At least that was an easy fix.

On a more positive note, Collin has been crawling all around at a pretty fast clip. Last night there was a trail of toys all over the floor that he had explored and played with, and it made me smile. He's laughing a lot, especially when he's playing with Neya, and it's one of my favorite sounds!

Wednesday, November 17 - Day +35

2010-11-17T21:18:00.007-05:00

As we left the hospital Saturday, the nurses lined the hallway and showered Collin with confetti. I was holding it together pretty well until then, but suddenly it hit me-we were really going home! Honestly in April, as our world fell apart, and many times along the way, it didn't feel like we'd ever make it to this point. I was overjoyed to be taking Collin home. He was pretty excited too; when I put his shoes on and put him in his stroller, he started shaking with excitement. As we walked down the hall, he was waving goodbye to everyone, and shook with excitement as he pointed to the elevator. It was a joyful sight!

We've been home for five days now. Getting home, unpacking and putting things away, getting organized, getting into a routine, meeting Collin's care needs, and trying to take care of normal household chores has been challenging. I am so thankful that my Mom was here to help; I don't know how we would have survived without her! As much as I wish we could go back to the way things used to be now that we're home, it isn't possible. It's a new "normal" for us now.

Here is an idea of our routine since coming home:

6:00 am-wake up, get myself ready for the day
7:00 am-disconnect the TPN (IV nutrition) from Collin and flush both lumens of the Broviac
-get Collin dressed and ready for the day
-wake Neya and get her dressed and ready for the day
8:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
-breakfast for Neya
-pack lunch for Neya
8:30 am-Neya to bus stop
8:45 am-prepare and give Collin his morning meds, and disconnect feeding pump (oral nutrition)
-breakfast; try to get Collin to eat something
-clean up from breakfast
10:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
12:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-lunch; try to get Collin to eat something
12:45 pm-prepare and give Collin his afternoon meds
1:00 pm-take TPN and vitamin vials out of the fridge to come room temperature 4-6 hours before use
2:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
4:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-help Neya with homework
4:45 pm-prepare and give Collin his early evening meds
-get feeding pump ready for the night, connect and start 16 hours of tube feeds
5:00 pm-get TPN ready for 12 hour infusion
6:00-put antibiotic ointment in Collin's right eye for the corneal abrasion
-dinner; try to get Collin to eat something
7:00 pm- connect IV pump and start 12 hour TPN infusion
-sponge bath for Collin
-shower for Neya
-shower for me
8:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-prepare and give Collin evening meds
-kids to bed

Between my mom and Bill, they have been taking care of most of Neya's needs, straightening up the house, doing laundry, and preparing meals. At any time throughout the day, I also have to clean up multiple episodes of vomit and/or diarrhea, keep a toddler occupied and happy or get him to take a nap, handle temper tantrums, and fit in therapy, ophthalmology, clinic, and/or home nurse appointments. My mom and I were joking (sort of) that we need a house keeper like Alice from the Brady Bunch for a short time. Things will get easier as we don't have to use TPN anymore, or do the eye ointment, or clean up vomit/diarrhea, etc. By the time I get into bed at night, I can't keep my eyes open for long; and even once I fall asleep, it doesn't last all night because Collin usually wakes up at least once or twice. And as frustrating and overwhelming as things can get, I know that if I were one of the moms who doesn't get to bring their child home, I'd give anything to have all of this chaos to deal with, so I'll keep it and do the best I can. But please bear with me if it takes me a while to return a phone call, answer an email, update the blog, etc. Thanks!!!

Thursday, November 11 - Day +29

2010-11-11T21:39:00.002-05:00

After I learned of Tuesday's loss, I couldn't bring myself to write an update that night that included discussion about our plans to go home. It's not right that a mother had to leave here knowing her son would never be home again. Whenever I hear of another child who loses the fight against this evil thing called cancer, it sends me into a tailspin. I feel this sense of sick dread. It's heartbreaking and depressing. It's my biggest fear. And yet, despite the fact that the world has come crashing down around someone, life keeps moving for the rest of us. It just isn't fair.

Over the last week Collin has been more playful and verbal than he was as he recovered from the VOD. His sense of humor has returned, as has his ability to throw big dramatic temper tantrums. But (most days...I'm only human) even the behaviors that may have gotten under my skin at one time now make me smile, because I'm just thankful that he is still here, and able to do more than just lay in a bed.

Collin's labs have been exactly where they should be. His white blood cell count is increasing on it's own, which means the stem cells have engrafted and are doing their job. His blood clotting factors have returned to normal, as have his liver functions. He has been tolerating the tube feeds a little better the last few days. Instead of rushing to increase the tube feeds to a volume that would sustain him and allow us to stop the IV nutrition prior to discharge, it was decided he can go home on some IV nutrition and we can continue to increase the tube feeding a little slower so he won't throw up as much at home. Twelve hours of IV nutrition and tube feeding around the clock will make some things more challenging, but it's time to get Collin back home into his own environment so he can keep moving forward. Although he will be ready for discharge by tomorrow afternoon, logistically it will be easier for us to go home Saturday morning, so that's the plan.

It's hard to believe this is our last scheduled admission; in April it seemed like this was an impossible dream, and that it would take forever to get to this point (if we would even reach it at all), but looking back, the last seven months have really gone by quickly. And in that time, I have met so many amazing people who have become like extended family-the doctors, nurses, therapists, aides, social workers, unit secretaries, and housekeepers who have been beside us in our darkest days, and have shared our joy at each improvement, no matter how small. I know they get payed to do the jobs they do, but no amount of money can make anyone genuinely care like they do. Thank you hardly seems like enough, but I don't know what else to say. We have been so blessed throughout this journey.

Tuesday, November 9 - Day 27

2010-11-09T21:28:00.002-05:00

My heart is heavy as I write this. The cancer warrior I wrote about on Sunday got his angel wings tonight. He was too young, his life is over way too soon. Please keep him and his family and friends in your prayers. Hug your children, and anyone else who is important to you, and always remember to tell them how much you love them.

Sunday, November 7 - Day +25

2010-11-07T21:44:00.002-05:00

The last few days have been fairly quiet. Collin's eye is bothering him a whole lot less now that it is sutured. I'm not even sure he realizes that it is sutured; the corner that his eye turns to is still open, so he can still see. He's not trying to rub his eye as much as he was, so we take the elbow immobilizers off for periods of time, especially when we are right next to him and can stop him if he does try to rub his eye.

In order for Collin to be discharged from the hospital, he has to be able to tolerate tube feedings so that he can be nutritionally supported at home. His stomach hasn't had anything in it for weeks, so the process of getting him off the IV nutrition and back onto oral nutrition is a bit of a challenge. Prior to this hospitalization, Collin was getting two cans of formula overnight, a total of 500 mL, at a rate of 50 mL per hour, as well as whatever he ate during the day. Right now, Collin has little interest in eating, possibly because his ability to taste has been affected by the chemo since it kills off taste buds. So, until his interest in eating returns, Collin will again get the bulk of his nutrition through his feeding tube. The tube feeding was started at a slow 10 mL per hour around the clock to get his stomach used to being used again, and then it is slowly increased every few days. Today it was increased to 15 mL per hour. Unfortunately, vomiting is a regular occurrence as his stomach re-adjusts. It can happen anytime, without warning. I'll spare the details, but I am so hoping that by the time we go home, the vomiting will not be an issue, either because his stomach has adjusted, or the anti-emetics are helping!

There is another warrior on this unit that needs a lot of prayers, the son of a friend of my in-laws. He should be enjoying his senior year of high school, but instead he is here fighting for his life. He's not doing so well, and probably doesn't have much time left. Please keep him and his family in your prayers as they face the unthinkable. Thank you.

Thursday, November 4 - Day +22

2010-11-04T20:33:00.007-04:00

After my last entry Monday night, Collin's fever increased a bit, and he was put back on antibiotics. He also had a few episodes of diarrhea over night, so another stool culture was sent, which came back positive for c-diff yet again (he just got over his third bout of c-diff, this is now the fourth time he's had it). All of the blood cultures came back negative for infection, so the antibiotics were stopped yesterday.

On Tuesday, an ophthalmologist came to look at Collin's right eye because the corneal abrasion didn't seem any better even though he had been on the antibiotic eye ointment for seven days. Since the eye does not blink or close all the way when Collin is sleeping, it has become too dry to heal, despite using ointment and eyedrops to lubricate it. The abrasion is pretty deep, and if it doesn't heal soon, it will start to develop scar tissue that will permanently impair the vision in that eye. The ophthalmologist that came Tuesday wanted to consult the other ophthalmologist that has seen Collin in the hospital before making a decision about how to treat the abrasion because of the turning in of the same eye. Both doctors have examined Collin, and have decided to suture his right eyelid part-way closed to allow the abrasion to heal. By closing the eyelid halfway, there will still be a tiny space at the inside corner of the eyelid for the eye to see out of; that way when we patch Collin's left eye, the right eye will still be able to see enough that Collin's brain won't ignore the eye, so that there will be some functional vision left when the surgery is done to help the eye turn back out (unfortunately that surgery cannot be done at the same time, because it causes inflammation which won't help the abrasion heal, and since Collin's immune system is still weak, any non-critical procedures must wait due to risk of infection). If suturing the eye partly closed is not enough to help the abrasion heal, they may have to sew the eye completely closed; but if that happens, there will be no vision left in the eye once the sutures are removed; the brain will ignore the eye after just a few weeks of not being used at all. Corneal abrasions are very painful, and Collin has been very bothered for over a week now. In order to keep him from rubbing his eye, he now has immobilizers on both arms that keep his elbows straight so that he can't reach his eye with his hands. Of course he can't do much of anything else either with the immobilizers on, and I don't want him to lose any gains he's made in other areas. He can't play, hold on to a walker, or feed himself, etc. with the immobilizers on, but if they are taken off, he quickly tries to rub his eye. The entire situation is very frustrating, and again I'm left wondering why Collin has to be thrown so many roadblocks on his road to recovery. I knew and accepted that hearing loss from the chemo was a possibility, but possible vision impairment or loss never entered my mind. I am hoping for the best outcome possible at this point, and I'm sure he can learn to adapt to having functional vision in only one eye if it comes to that. But none of this is what I wanted for my child. It's just not fair.

Despite the eye pain, the immobilizers on his arms, four small episodes of vomiting, and a tiny fever that landed him back on antibiotics yet again, Collin had a great day today. He was more vocal than he's been in a few weeks. He played with his nurses and therapists. He smiled and laughed a lot, and had us doing the same. The scan of his liver showed the blood flow is now going in the right direction. He is almost back to his pre-VOD weight. His labs are good. The attending physician today said there's not much keeping him in the hospital now; as soon as he is able to tolerate nutrition either by mouth or feeding tube instead of intravenously, he can go home. So this evening his tube feeds were re-started with the hopes he won't have a lot of vomiting as his stomach readjusts to being filled. With any luck, maybe we can go home by the end of next week!

Monday, November 1 - Day +19

2010-11-01T23:49:00.002-04:00

Overall, today was a good day. Collin's morning dose of Risperdone was held to see how he would be without it; he was more awake, alert, and interactive today. He smiled, laughed, played a little, and watched some of his favorite music videos. And, he didn't have any of the tremors he had last Monday. He had a little juice from a spoon this morning, but the rest of the day didn't seem to have any interest in eating or drinking anything. His dose of Morphine was reduced, and he still seems comfortable. His weight and belly circumference have come down a little more, and most of his labs looked pretty good today. Unfortunately tonight he is running a low grade fever, so the usual blood cultures will be drawn, and he'll most likely be started back on the IV broad-spectrum antibiotics.

Sunday, October 31 - Day +18

2010-10-31T12:11:00.002-04:00

The last few days have been medically boring, which is the best kind of day you can have in the hospital. Collin sleeps a lot day and night, which I think is in large part due to the Risperdone, but he needs the rest, so right now it's a good thing. The tremors seem to have stopped for the most part; but we don't know if they are really gone, or if the Risperdone has stopped them. He is off the oxygen completely, and is having no trouble maintaining his O2 sats. He is slowly losing the extra weight he gained because of the fluid in his abdomen, and his abdominal circumference is also slowly dropping. We had to bring size six diapers in from home because the size fives he was using suddenly didn't fit when his belly was so distended, and even then the size sixes barely fit; now they are fitting more normally. He has been afebrile for days, and is off the IV antibiotics. His white blood cell count has dropped to a more normal level, which also means he is free of infection. He has started to take some juice off a spoon, and is keeping it down better than he was a few days ago. He still requires occasional transfusions of blood products, mostly packed red blood cells or platelets, but they are not as frequent as they were. His ammonia level is slowly dropping, as is his bilirubin level. He may have another doppler of his liver some time this week to check the direction of the bloodflow through it, and if that shows improvement, he may not need the full twenty-one day course of Defibrotide. He has stopped rubbing his eyes as vigorously as he was, and although I'm sure his right eye feels better as the corneal abrasion heals, another thought occurred to me yesterday: all of the tiny eyelashes (and eyebrows and hair) that had started to grow are gone again, and maybe the eyelashes were itching his eyes as they fell out. Now that I think about it, I think the same thing happened the first time he lost his eyelashes in May or June. And surprisingly in the last two days, we have noticed even more of an improvement in his left eye; it seems to be turning out to the center more and staying there for longer periods of time. It makes me wonder how much his vision has changed (if at all), because now he puts his little hand up to his forehead sometimes, almost like he may have a headache or feel dizzy. Oh how I wish he could tell us! Overall, he seems to be making small improvements every day. I feel a lot better about things than I did in the beginning of the week, and have even managed to get some sleep. Thank you all for your prayers, support, encouragement, and well wishes! You have helped hold me up when I didn't think I could stand anymore!

Thursday, October 28 - Day +15

2010-10-28T21:09:00.000-04:00

Saturday night, Collin had a small nosebleed; his nose was very dry because of the oxygen, and he was constantly rubbing his eyes and nose when he was awake. His platelet count was also low, so he had another platelet transfusion overnight. We also tried a dose of Benadryl, which really seemed to help alleviate the itching of his face.

On Sunday, Collin rested quietly for most of the day. He wasn't very verbal, and hadn't really tried talking since his visit to the PICU. He spent the day either sleeping, or laying in the bed staring. His blood pressure was low, and his heart rate was elevated, but this was likely due to the diuretics. Diuretics cause the kidneys to add more sodium to the urine which will then be excreted by the body. When the sodium is excreted it takes along extra water with it as well. This reduces the amount of water in the blood stream, which means that there will be less pressure exerted on the artery walls. Therefore blood pressure will be lower, which in turn can raise the heart rate because the heart works harder to pump a smaller volume of fluid. His resting heart rate was elevated, and when he got excited, his heart rate increased dramatically. Increased heart rate can also be a side effect of the Defibrotide that is supposed to help Collin's liver, so we were watching it carefully.

Very early Monday morning, Collin woke up and was unable to be still. He had tremors which reminded me of how someone with Parkinson's disease may look. The tremors continued all day, and Collin was not able to get any rest. Since we were not sure what the cause of the tremors was, the Defibrotide was held, and some tests were ordered to try to pinpoint a reason Collin was unable to be still. A chest x-ray was done to make sure the Defibrotide wasn't causing any bleeding in his lungs; thankfully his lungs were fine. By late Monday afternoon, Collin was unable to sit up on his own without falling over, and at one point he could not even hold his head up straight. The attending physician came to see Collin again, but wasn't sure what was causing the tremors or weakness. By that point I was terrified; no one had any idea what was wrong with Collin, and Collin seemed distressed. Suddenly, this child who has been through so much already seemed to be getting a lot worse, quickly. I wondered what we had done to him that could have caused this reaction, and I had a bad feeling that he wasn't going to survive whatever this was. The attending physician asked the nurse practitioner if Collin's ammonia level had been checked. It hadn't been, so they drew blood to check the level. It came back elevated, which indicated that Collin's liver was not able to filter his blood properly, and toxins were building up in his body. The attending physician felt that hepatic encephalopathy was a possibility. Hepatic encephalopathy is a worsening of brain function that occurs when the liver is not able to remove toxic substances in the blood, and it may occur suddenly when damage occurs to the liver. Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. Many other substances may also build up in the body if the liver is not working well, and they can cause damage to the nervous system. So, changes were made in Collin's medications; medications that are normally broken down by the liver were stopped, he was given extra potassium, and his TPN formula was changed to have less protein in it. Tylenol was held unless he needed it for a very high fever, so to try to alleviate the low-grade fevers that Collin was having, we used cold wet washcloths on his forhead and the back of his neck. He had another CT scan, but that was also negative for any findings. While he was sedated for the CT scan, an ophthalmology resident came to examine his eyes, because they were so irritated from constantly being rubbed. She found a corneal abrasion on his right eye, and prescribed an antibiotic ointment for his eye. I don't know if Collin has been rubbing his eyes because the corneal abrasion was causing him discomfort, or if the constant rubbing caused the corneal abrasion.

Monday night was not very restful; Collin was still having twitching or tremors even in his sleep. On Tuesday, he seemed more agitated when he was awake, and would yell or cry at times. The medical team decided to consult a neurologist. She examined Collin and decided to order an MRI to look at an area of the brain that doesn't show up well on a CT scan to rule out a bleed or a stroke. On Wednesday, we were told the MRI was negative, and the neurologist talked about doing an EEG to rule out seizures. She felt the likelihood of seizure activity was very low, and since putting on the EEG probes requires scrubbing the head with exfoliant, I didn't think an EEG was a good idea; Collin bleeds easily right now and is at risk for infection, so leaving him with a head full of abrasions wasn't something I wanted to consent to.

The team also consulted a gastroenterologist to see what he thought. He agreed Collin has veno-occlusive disease, but did not feel he had hepatic encephalopathy. He said while Collin's ammonia level was elevated, it was not alarmingly high, and Collin's other liver function numbers were turning around. Collin had had a doppler ultrasound of his liver last week which is what showed the blood flow backing up in the liver, but the gastroenterologist wanted to have another ultrasound of the liver to get a look at the amount of injury to the liver tissue. The ultrasound was done late yesterday afternoon. The gastroenterologist told us today that the ultrasound showed Collin's liver is enlarged, and that the whole liver is injured. While that sounds bad, he said it's actually better than just being damaged in one area, because it supports the VOD diagnosis, and doesn't look there is anything else going on. He said that although it will take some time, the liver will heal and there won't be any permanent damage.

Last evening, Collin had another transfusion of a blood product, this time cryoprecipitate, which contains a protein called Fibrinogen that plays a key role in blood clotting. Fibrinogen is manufactured in the liver, but since Collin's liver isn't functioning quite right, his level was low; since he has had a few nosebleeds, it is important to make sure his blood can clot properly.

On Tuesday night, Collin was started on Risperdone to see if it would help calm the tremors. It has seemed to help, but also makes Collin drowsy, so this morning his morning dose was lowered so he would be less drowsy during the day. It has helped Collin rest more peacefully at night, and last night I got my first full night's sleep in weeks. Today his IV antibiotics were stopped, because he has not had a fever for a few days, blood cultures were negative for infection, and his white blood cell count has dropped to almost normal, which means there is no infection present. His morphine has also been lowered since his mucositis has healed and he shouldn't be in any pain. We will watch closely to make sure he doesn't have or develop pain in his belly, which could indicate that the extra fluid in his abdomen has become infected. Collin has been off oxygen for twenty four hours now, and has had no problems breathing. His ammonia level has not increased, and his other blood levels are normalizing. His extra weight from the fluid is slowly coming down, as is his abdominal circumference. The speech therapist tried getting Collin interested in eating or drinking a little something today, but because the fluid in his belly is probably pushing against his stomach (and other organs) and making it smaller right now, Collin isn't hungry and had no interest in eating or drinking. We will just keep offering tastes of food or drink, and he will let us know when he is ready.

Overall, it seems like Collin is making small improvements every day, just like he always has. The VOD has added a few weeks to our hospital stay, but as long as he continues to improve, nothing else matters. Please keep praying for Collin, little Caiden, little Sean (two other toddler cancer warriors on the unit), and all of the other children who unfairly have to battle this horrible disease.

Saturday, October 23

2010-10-23T21:16:00.002-04:00

9:15 pm

We are back in our room on west hall, and Collin is resting peacefully. I think I may actually get some good, restful sleep tonight!

Saturday, October 23 - Day +10

2010-10-23T10:19:00.004-04:00

Collin had a good night and rested comfortably for most of it. Early this morning he woke up crying and had some extra Morphine. After looking at his labs and seeing his white blood cell count, I'm thinking he's having the bone pain from Neupogen and engraftment. He's off the Neupogen now, but his marrow is working hard to push out the white blood cells; I think they have doubled every 12 hours or so. His belly girth is a cm smaller, and he's had some really wet diapers after this morning's dose of Lasix. And the Defibrotide is infusing right now! His kidneys are doing fine, and his liver is slightly improved...his bilirubin is down a tiny bit which happened last night on its own, and it's still within normal limits. He is on very little O2, and they will try again to see if he can maintain his sats above 94 on room air today. He was smiling at me this morning, and wanted to sit up. He is very alert, looking around right now, and seems comfortable. The nurses here have been as wonderful as they were in April, and the PICU docs just rounded on him and I sat in on it. I was able to follow along with no problem, and when I asked questions I think I sounded like I know what's going on. His nurse this morning asked me if I had a medical background! I said just on-the-job training...

We will be going back home to our family in the hem/onc wing later today! :o)

Friday, 9:40 pm

2010-10-22T21:35:00.004-04:00

There's not much new to tell right now, which is a good thing. Collin requires a lot less oxygen, and is breathing much easier. He is sleeping, and seems comfortable when he sleeps. When he wakes, it's a different story; he cries and is very upset. I imagine his belly is uncomfortable, and I'm sure he doesn't like having his hands restrained to the bed (so he doesn't pull off the oxygen). He also knows he's in a different place. Luckily I seem to be able to calm him down without too much difficulty, and he goes back to sleep.

Some of his medications have been changed or stopped in preparation for the Defibrotide. At this point Collin is NPO, which means he is not allowed to eat anything by mouth. This is so that his liver isn't taxed further by having to help with digestion, along with the fact that eating is probably the last thing he'd want to do with his belly being so uncomfortable. He will remain NPO for a few weeks, as this condition will take at least that long to resolve, even once the Defibrotide is started. He is still receiving the TPN (IV nutrition) at a slower rate. Luckily he shouldn't have any permanent liver damage, and I was surprised to see that his bilirubin level had gone down a smidge instead of up. He is still getting the diuretic intermittently, and he has had some really wet diapers. His belly girth (59.5 cm!) has not changed since this morning; at least it hasn't gotten any bigger. He is stable for now, and hopefully tomorrow he will be able to return "home" to his room, which luckily has so far been held for him to come back to. I feel like there is a plan in place, and I feel a lot more confident that this is going to turn out ok. And it's amazing what a short nap and a shower can do for the soul; I feel like a new person! Thank you again for all of the love and prayers that have been sent our way!

Friday, 12:55 pm

2010-10-22T12:52:00.001-04:00

UPDATE:

We just found out the drug was approved!! It will be sent by courier from CHOP and should be here tonite or tomorrow. Furthermore, they may re-think the study criteria for children, because they have had the request before. Thank you everyone for your prayers, love, and support!!! We are forever grateful!!! I will continue to keep you updated...

Friday, October 22 -Day +9

2010-10-22T10:50:00.001-04:00

Wednesday Collin seemed to be doing a little better. He was afebrile all day, which was a welcome change. His diarrhea slowed down. He received another blood transfusion and another platelet transfusion. He rested a lot, but did have one or two times when he sat up for a bit and was interested in playing. When I weighed him in the morning, his weight had increased by .6 k in 24 hours, which is 1.32 lbs. He was also puffy looking. This meant his fluid output was lower than what he was taking in, so he was given a dose of Lasix, a diuretic, to help him pee more to get rid of some fluid. He also was switched to a different anti-fungal drug instead of the one that had caused rigors and possibly some of the increased temperatures (referred to as "shaking and baking") the day before.

Wednesday night before I went to sleep, I thought Collin felt warm when I changed his diaper. Sure enough, he had a low grade fever and was given Tylenol. Around 4:30 Thursday morning, he woke up crying. I checked his diaper but it wasn't wet. I was trying to comfort him, and his nurse came in. She asked about his diaper, and I told her it was dry, and I figured someone had changed him. She said she had changed him a while before then, but that diaper hadn't been wet either. She had let the covering resident know, and the resident had contacted the covering physician, but he didn't feel it was necessary to order another dose of diuretic at that time. So at 4:30 am, Collin still had not peed much, he was so puffy that his belly was hard and his bellybutton was sticking out, and he was having some difficulty breathing. We weighed Collin, and his weight had increased another .9 k, which is almost 2 lbs. His oxygen level was also decreased, and he seemed to be having slight difficulty breathing. The attending physician was notified, and he finally ordered a dose of Lasix, and X-Rays of Collin's chest and belly.

Later in the morning, when the attending physician came by, he said the X-Ray showed haziness in Collin's right lung, which could have been either from fluid or infection. He ordered more Lasix to try to help Collin's system get rid of some of the fluid it was retaining. Another chest x-ray would be done Friday morning to see if the right lung had improved after some of the fluid was reduced. The doctor also ordered a doppler ultrasound study to be done on Collin's liver. Finally, he added a steroid and a nebulizer treatment to reduce the upper airway inflammation that was evident when Collin was breathing. He felt this was because Collin's white blood cell count had jumped overnight, so there were white blood cells, whose job it is to fight infection, attacking the mucositis in Collin's body, which can cause inflammation.

The nebulizer treatment and the steroid seemed to help Collin's stridor. He was put on oxygen and we switched the humidifier that we had rigged over his bed to oxygen from regular air to try to prevent his from getting too dried out. He was doing well and maintaining his oxygen saturation level throughout the day. The liver ultrasound showed that Collin's blood was going into his liver, but instead of going out of the liver after being filtered, it was backing up and seeping out the way it came in. At that point he had all but one symptom of VOD, or veno-occlusive disease, a complication from the high dose chemo and stem cell transplant.

From Wikipedia:
"Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant (BMT) and is marked by weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood. The name sinusoidal obstruction syndrome is now preferred if VOD happens as a result of chemotherapy or bone marrow transplantation. In the BMT setting, VOD is felt to be due to injury to the hepatic venous endothelium from the conditioning regimen."

Basically, the high dose chemo injured the vein walls, which allows fluid to leak out of the veins into open spaces, called third spaces, in the body. It was likened to a hose that has holes in it; when water goes through the hose, it comes out of the little holes instead of going all the way through the hose like it's supposed to. This fluid is leaking into Collin's abdominal cavity, which is putting pressure on his lungs, making it difficult to breathe. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs, and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water, causing fluid to build up in the body and swelling in the legs, arms, and abdomen. In severe cases of VOD, excess fluid in the abdominal cavity puts pressure on the lungs making it difficult to breathe. Symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity (called ascites).

There is no actual cure for VOD. The medical team tries to prevent more serious complications, which can include kidney, heart and lung failure, and even death. Collin has all of the symptoms but the jaundice. His bilirubin level is slowly climbing, but is still within normal limits. There is a drug called Defibrotide which can successfully treat the VOD over time. While the drug has been used in Europe for twenty some years, it has not been approved by the FDA for use in the US. The drug company that makes it is performing clinical trials, and Collin meets all the criteria for the trial but one: his bilirubin level isn't high enough yet. So at this point the only thing we can do is manage the symptoms he has now; oxygen to help him breathe, diuretics to help get rid of some of the fluid, pain meds to keep him as comfortable as possible, and possibly having to tap his abdomen to drain some of the fluid out. The problem with tapping his belly is the risk of infection or bleeding; his immune system is still very weak, and he requires regular platelet transfusions to help his blood clotting abilities so he doesn't bleed to death. Once his bilirubin reaches a certain level, he would qualify for the study and could start the drug. The medical team is going to call the study coordinator and ask if an exception can be made, but I've been told not to get my hopes up that they will allow Collin to have the drug before his bilirubin reaches the required level. I'm praying for compasison, because it seems ridiculous to wait until he gets worse when we know he's headed that way anyway.

So last night, Collin was maintaining his oxygen saturation level on oxygen one minute, and then that changed in an instant. Despite oxygen his sats were dropping, and nothing we did was increasing them. Collin's nurse called for a rapid response, and within a minute or two there were twenty different people in his room assessing Collin. He was rushed back to the pediatric intensive care unit where they are better equipped to handle such an emergency.

The team finally got him stabilized, and another chest X-Ray was done. This showed marked improvement in the haziness that was seen yesterday. This morning when the transplant doctor stopped in, he said they are trying to get the drug, but until they can, either out of compassion or because Collin's bilirubin goes high enough, they will do everything they can to maintain Collin's condition and prevent him from getting worse. At this point there is little hope the condition will turn around on it's own. So far, there has not been permanent damage done to Collin's liver. At tnis point, the condition isn't likely to be fatal, but the doctor said he won't sugar-coat things and that it could head that way, but he will let us know if things are headed that way. The transplant doctor, Collin's oncologist, and his hem/onc nurses have seen kids in worse condition than Collin is in survive, so I am trying not to lose hope.

After rounds this morning, the plan is to keep Collin in the PICU another night. There are many calls into the people in control of the Defibrotide; it seems they are preparing to ship the drug from Dallas so that it is here when it's needed, whether they allow him to have it early or his bilirubin level gets high enough. At the rate the level has increased so far, it probably won't be long until it's high enough to qualify for the trial anyway. I will do my best to post updates as I have them.

Tuesday, October 19 - Day +6

2010-10-19T22:15:00.005-04:00

Well, not long after last night's entry, my hopes for a peaceful night were dashed. Collin's fever went up to 104.4 despite a dose of Tylenol an hour earlier, and his nurse got him an ice pack to lay on to help bring the fever down. Later, he started rubbing his nose and eyes, and wouldn't stop. I wondered if he was very dry because of the dry hospital air and the Benadryl, so we hung a makeshift humidifier over his bed, and gave him lubricating eye drops and saline nasal spray to try to make him less itchy, but they didn't seem to help. His eyes were red and puffy, and he ended up with some bruising between the inside of his right eye and the bridge of his nose. As it turns out, his platelet count had plumeted, which caused him to bruise very easily, so he had another platelet transfusion this morning. I requested a few doses of Morphine throughout the night so that he wasn't too uncomfortable, and this morning he was put on a Morphine pump. I also learned this morning that stool cultures came back positive for C-Diff, so he was started on another antibiotic to treat that infection.

Today, Collin's fevers continued, and he was also given an antifungal drug called Abelcet. The drug was given via IV infusion over two hours. During the two hour infusion, his blood pressure was taken every fifteen minutes. About halfway through the infusion, he developed extreme shivering/shaking called rigors, and was given four doses of Demerol to get the reaction under control. If he gets the drug again tomorrow, he will be given Demerol before and during the infusion to hopefully prevent the reaction; I am hoping that his blood counts will miraculously increase over night so that maybe he doesn't need to get another dose of the drug. Then shortly after the infusion was complete and the rigors stopped, his temperature went up to 104.7, and he started to shiver and shake once again. Another dose of Tylenol and cold washcloths on his forehead and the back of his neck helped get the fever under control.

I haven't slept well since we were admitted, and the last twenty four hours were no different. I'm utterly exhausted. While it is very hard seeing Collin so sick after he's been doing so well, I know that in a few days he will start to turn around again, just like he's done every time before this. He is such a fighter, and he is stronger than I will ever be.

Monday, October 18 - Day +5

2010-10-18T21:28:00.004-04:00

Collin's fever has continued to come and go since my last blog entry; this afternoon it was 103.5. The mucositis is ugly. He continues to have diarrhea, and despite being changed as soon as he goes and being slathered with heavy-duty diaper cream, his poor little bottom is so red and sore that when I go to change his diaper, he shakes his head and says "no." Unfortunately today he had a number of episodes of vomiting mucus, and we have to suction his mouth out when he vomits to help get the mucus out. Tonight when I did his mouth care I saw that the inside of his mouth was bleeding, and almost looked like it was peeling. He is not able to eat anything by mouth because it hurts too much, so he is getting IV nutrition. His fast growing cells are definitely being sloughed off, which also means that the tiny bit of peach fuzz hair and eye lashed that have started to come in will fall out soon. Yet despite obviously feeling pretty crappy, Collin still manages to smile and play every so often. He is so incredibly strong, and I am continuously in awe of him. As I type this entry, Collin is resting peacefully with the help of Morphine, Benadryl, and Ativan, so I am going to take advantage of that and get some rest myself.

Collin turned 22 months old today!

Saturday, October 16 - Day +3

2010-10-16T21:58:00.004-04:00

Collin has had a fever on and off throughout last night and today. He is on the broad-spectrum antibiotics, and is getting Tylenol for the fevers. Despite the fevers, his day was better than I expected it to be. His mouth doesn't seem to be any worse, and he didn't seem to be uncomfortable or need Morphine today. He still has some diarrhea, but no vomiting. He ate a few bites of food for breakfast and dinner today, and had short periods of time when he wanted to sit up and play with toys. Overall he didn't seem any worse today than he did yesterday; I am surprised but grateful!

Today I met the mother of a beautiful little boy named Caiden, sixteen months old, who is undergoing his first round of chemo and having a rough time. Please keep him and his family in your prayers!

Friday, October 15 - Day +2

2010-10-15T21:59:00.006-04:00

Around 12:30 Thursday morning, Collin woke up a little fussy, and then I heard him fill his diaper. As I was changing him, he continued to have diarrhea; I'd get him cleaned up, and he'd go again right away. Then as I continued to get him cleaned up, he vomited quite a large volume. I ended up having to bathe him and change all of his bedding. Then we had to change the dressing over his Broviac because it was smelly. I hated having to change the dressing so soon after it had been put back on Monday after the Thiotepa baths were done, because the skin on Collin's chest was so red and raw. It took three of us to accomplish the dressing change; one nurse to do the dressing, another to hold Collin's hands so he didn't reach up and touch the sterile field, and me holding a disposable chuck pad under his chin so he didn't vomit all over his chest. He did vomit again during the dressing change, and we were afraid he aspirated some of it into his lungs because of how he was laying (on his back) and because it took him a minute to get his breath. After we finally got the dressing changed and everything cleaned up for the last time, Collin was given more antiemetics to help with the vomiting, and his tube feeds were stopped. Two residents came up to assess him, and based on how his lungs sounded, they didn't feel he had aspirated any emesis.

Collin spent most of Thursday morning sleeping. Then a little before lunch time, he perked up, and when the lunch tray came, he wanted to eat. He ended up eating a whole bowl of chicken noodle soup and six saltines. After he ate, he went back to sleep, and later was sitting up in bed playing. Then out of the blue, he vomited again, pretty much everything he ate for lunch. His oncologist felt the vomiting and diarrhea may have been caused by the stem cell preservative, not necessarily mucositis yet. In the end it doesn't matter what the cause was, it just stinks to see Collin sick like that.

Over Thursday night into this morning, Collin continued with the diarrhea, so last night wasn't restful either. Today the diarrhea had some blood in it. He had received platelet transfusions Wednesday and Thursday morning, as well as this morning, and because of the blood in his diaper this afternoon, he received another platelet transfusion this afternoon. The frequent need for platelets is expected after transplant, so at least I'm not surprised by all the transfusions.

Collin has now developed mouth sores (which he's never had before), and is unable to eat even though he may be feeling hungry. Tonight he was started on TPN, the IV nutrition he was on in the first round of chemo back in May. He had a dose of Morphine this afternoon, and will probably need to be on a continuous Morphine drip very soon (mucositis has been described as a mouth full of canker sores, and a sunburned GI tract). He is drooling a lot because of the mouth sores, and is sounding more congested. I have been told that the mucositis is usually at it's worst around days four and five after transplant, so I expect this weekend will be rough. Collin also developed a fever tonight, so the usual blood cultures, etc. will be done, and he is being started on antibiotics.

Wednesday, October 13...Day 0...Transplant Day!

2010-10-13T23:06:00.001-04:00

Today was the big day, the day Collin would get back some of his stem cells that were collected on Memorial Day. The last five months of chemo, plus the mega high doses of chemo that Collin received last week, all led up to today. Without the stem cell rescue today, Collin's blood counts would not recover from the high dose chemo.

It was important that the stem cells not be transfused too early so that they were not affected by any of the chemo drugs, so Monday and Tuesday were "days of rest" between the last dose of chemo and the stem cell transfusion. Monday afternoon was the last of the every-six-hour baths (YAY!), and I also replaced Collin's feeding tube. Tuesday, Collin had a transfusion of blood platelets, which help the blood to clot. He also had great therapy sessions with the occupational and physical therapists.

This morning began with another transfusion of blood platelets, because despite yesterday's transfusion, his platelet count continued to drop. There was a lot of behind-the-scenes prep for the stem cell transfusion, which was scheduled to take place around 11:00 am, but our morning was pretty routine and quiet. Collin was assigned a nurse who spent most of the day in his room, to monitor his blood pressure and heart closely. A cart carrying a container that held the stem cells still frozen in liquid nitrogen, as well as a machine to thaw them, was wheeled into the room. Two of the attending oncologists, Collin's nurse practitioner, the nurse assigned to monitor him, and another nurse who was observing the procedure, all gathered in the room with us. Collin had already been pre-medicated with the usual Tylenol, Benadryl, and Zofran to prevent allergic reactions and nausea, and was hooked up to the blood pressure and heart monitors. The man who brought the stem cells to the room thawed them right there, and then the nurse practitioner injected them slowly into the IV line connected to Collin's Broviac. In less than ten minutes, the stem cell infusion was complete, and because the Benadryl made Collin drowsy, he slept through the procedure. There were no complications with Collin's blood pressure or heart rate, and other than the smell of the preservative the stem cells were stored in, which smells like creamed corn, there are no other lingering side effects from the procedure. Collin's breath and diapers should stop smelling like creamed corn in a day or two. Now we just wait for the stem cells to graft and help bring Collin's blood counts back up, and hope that he doesn't develop a bad case of mucositis over the next week. Thank you for all of the love and prayers that have been sent our way!

Sunday, October 10, Day (-3)

2010-10-10T23:15:00.004-04:00

On Wednesday and Thursday of this past week, Collin received more Carboplatin. Carboplatin isn't as nauseating as other chemo drugs, so the days went pretty smoothly and Collin seemed to feel pretty well. On Friday, Saturday, and today, the Thiotepa and Etoposide were given. The Thiotepa is the chemo that is excreted through the skin, so Collin had to be bathed every six hours for the three days he received the Thiotepa, and then for another twenty four hours after the end of the last infusion of Thiotepa. We tried to come up with a bath schedule that didn't interfere with the hour he has to eat each meal, but unfortunately there was no way to avoid waking him in the middle of the night for a bath. The schedule we decided on was 3:30 am, 9:30 am, 3:00 pm, and 9:00 pm. Normally I try to have Collin in bed for the night by 8:00 pm, but I didn't want to wake him an hour after getting him to sleep, so I kept him up until the 9:00 pm sponge bath was done. After each bath, all of his bedding had to be changed, and Bill and I wore gowns if we were holding him to protect our skin from having prolonged contact with the chemo. The schedule has been draining on Collin and me; we are physically and mentally exhausted. The last scheduled bath will be 3:00 tomorrow afternoon, and then we can return to a more normal routine of earlier bedtime, fewer interruptions of sleep during the night, and one bath a day. Collin's skin is red and sore from the chemo and baths. The dressing over his Broviac had to be removed, so following each bath, the site had to be cleaned with Chloraprep and covered with gauze. The Chloraprep stings his skin, and we've had to be extra careful not to accidentally pull on his IV lines since there's not much of a dressing in place to help prevent the Broviac from being pulled out of his chest. Monday afternoon can't come soon enough.

Over the last few days, Collin's appetite has decreased. He seems interested in his meal tray when he sees it, but then doesn't eat very much. He has had some episodes of vomiting, and is on staggered doses of Zofran, Benadryl, and Ativan to help reduce nausea. The taste of some of his oral medications seems to make him gag and throw up, so it's getting harder to get him to take his meds. He is expected to start with mucositis in a few days, so Monday afternoon his feeding tube will be replaced before it becomes too painful to do so. At least then it will be easier to get his oral medications into him. Monday and Tuesday are days of rest (no chemo), and then on Wednesday he will have the transfusion of his stem cells that were collected on Memorial Day that will rescue his body from the effects of the high dose chemo he's received over the last week.

Tuesday, October 5, Day (-8)

2010-10-05T20:48:00.004-04:00

Collin was admitted to the hospital yesterday afternoon for the high dose chemo and stem cell transplant round. I spent most of last Friday, Saturday, and Sunday working to get everything ready for the hospital. Collin and I live out of a suitcase so that we're prepared to go back to the hospital in an emergency, and I keep two bins of toys packed in the living room along with other hospital necessities like a highchair, etc. Even though the clothes in the suitcases were clean, I had to re-wash everything and then seal the clothes in plastic bags, and then clean the suitcases before I put the bags of clothes back into them. I also had to unpack the bins of toys and books, and wipe down the bins and all the contents with Clorox wipes, and seal the toys in the bins until we got to the hospital. Then once we got to the room, the outside of everything had to be wiped down before it could come into the room. The goal is to have everything as clean as possible since Collin's immune system will be so compromised after the chemo and stem cell rescue. The hospital preparation was exhausting, and on top of that I was trying to do some housecleaning and laundry so that I wasn't leaving the house a mess. Of course there is a lot more to do before Collin is discharged back home, but I am thankful that with the help of family and friends, everything will get done.

When I got Collin out of the car and into his stroller once we got to the hospital yesterday, the poor kid started shaking his head and saying, "no, no, no." He was definitely not pleased to be back, and had some major temper tantrums last night. He's been through so much and it's completely understandable that he would be upset, and I tried telling myself to be thankful that he has the ability to throw a tantrum. But the frustrating thing was that his first tantrum, which was because I cut up his hot dog and he wanted to pick it up and eat it whole, lasted a whole hour. I couldn't get him to calm down so I could safely feed him and not risk him choking, so he ended up missing dinner because his tray can't stay in the room longer than an hour because they don't want to chance bacteria growing on the food and making him sick. Later when he calmed down I got him something else to eat, but then something sent him into another tantrum, and he threw the food on the floor. He had to be hungry last night when he went to bed, but it's hard to reason with an almost-two-year-old.

Yesterday Collin was started on IV fluids, and then was given the IVIg. It was infused slowly so that he didn't have the scary reaction he had the first time he received the drug in June. Luckily everything went smoothly and he had no negative reactions. Today, he had his first infusion of Carboplatin, which ran over four hours. He tolerated it with no problems. Everything today went very smoothly; Collin was in a good mood, had great therapy sessions, ate well and took his medicine orally with no problems (his feeding tube came out in his sleep Saturday night, and as long as he ate well and took his medicine, we didn't have to replace it right away because he wouldn't be receiving tube feeds during the chemo. It will have to be replaced probably early next week before the mucositis starts so that it's not too painful to put back in). I hope tomorrow goes just as smoothly as today did!

Wednesday, September 29

2010-09-29T23:40:00.004-04:00

Yesterday, Collin had another MRI to check his progress, and another lumbar puncture to make sure his CSF is still free of any cancer cells. A foley catheter was also placed while he was sedated so that his urine could be collected for 24 hours; the results of a creatinine clearance test will help the oncologist dose his upcoming chemo properly.

Today, Collin had another hearing test to monitor the effects of chemo on his hearing, and then we went to the clinic to have the catheter removed, return the consent forms for the upcoming hospital admission, and get the MRI results. The hearing test went very well, better than I expected; it showed Collin's hearing to be within normal limits in BOTH ears! Following the tumor resection, and up until today's test, his right ear has always shown some slight low frequency hearing loss, so I was very surprised to have different results today! The LP showed no signs of cancer cells in the CSF, which is what we expected. Then, the MRI showed "normal post-operative changes" and no evidence of disease! So, Collin is cleared for the next step in his treatment, the high dose chemo and the stem cell rescue. Our oncologist didn't expect anything less on the MRI, but if for some reason results would have been different, she said they couldn't go ahead with the next step, and we'd be having a different discussion. So we got the best results we could have hoped for all around today! It has certainly boosted my spirits!

This evening I had so much fun just watching Neya and Collin play together. They always have so much fun together, and it's always such a nice thing to see! The next few days will be busy with therapy appointments, and cleaning and packing the things we will take to the hospital. I'm making peace with the fact that I will get done what I can, and others will help with what I can't. We are so blessed to have so many wonderful people surrounding us! I have always said I never realized how many wonderful people my kids would bring into my life, and it still holds true!

Sunday, September 26

2010-09-26T23:53:00.003-04:00

I spent the weekend cleaning the house, as it has to be cleaned very thoroughly for Collin to come home to after his next hospitalization. Saturday, Neya and I cleaned the basement playroom, and then I packed up any of Collin's toys from the living room that can't be easily wiped clean. I also thoroughly cleaned the refrigerator. Today, Neya and I cleaned her and Collin's bedrooms, dusting everything and vacuuming floors, curtains, and stuffed animals. Bill and I moved the washer and dryer to clean around and under them, and then I cleaned the insides as well so I can start washing all of the clothes that we will bring to the hospital. There is a lot more to do to get the house ready, and there's no way I will be able to get it all done by myself before going to the hospital next Monday; thankfully we will have help from family and friends over the next few weeks to get everything ready for Collin's homecoming. It's hard to ask for help with things I am used to doing myself, and the words "thank you" will never be enough. We are blessed to have such wonderful people in our lives!

Tomorrow, everyone has the opportunity to help find a cure for pediatric cancer by eating at Chili's. All day on Monday, September 27th, Chili's restaurant will donate 100% of their proceeds to St. Judes Hospital for cancer research. This is ANY Chili's in the U.S.! What a great reason to get out of cooking for the night, or get friends together for lunch. It is a fun and easy way to help make a difference for these children!

Wednesday, September 22

2010-09-22T21:57:00.008-04:00

Collin was diagnosed five months ago today. In some ways I can't believe it's already been that long, and in others it feels like this journey has barely begun and that there is still such a long road ahead. Today we met with Collin's oncologist to learn about the upcoming round of chemo and the transplant. Tonight I am exhausted and overwhelmed. We learned about what to expect medically during the next round-the drugs, the side effects, the risks, etc. We also were given an idea of the things we'll have to do to prepare for admission to the hospital, but since I now have a meeting tomorrow where I will be given another binder full of information and details, I won't go into that stuff until tomorrow.

Collin will be admitted to the hospital in the afternoon on October 4, which is known as day -9. On that day he will receive intravenous gammaglobulin (IVIg), which is a blood plasma product that helps boost the body's immune system. The first time he received IVIg he had a very scary reaction during the infusion, but since then it is infused very slowly and he has had no problems.

Over the next three days (days -8, -7, and -6) he will receive the chemo drug Carboplatin, which will be infused over four hours each day. At high doses this drug can cause deterioration in hearing or kidney function, as well as deterioration in liver function. These side effects are rare; however it does cause nausea, vomiting, and diarrhea.

Over days -5, -4, and -3 he will receive two drugs, Thiotepa and VP-16, aka Etoposide. Thiotepa may cause mucositis resulting in mouth sores, inability to eat, and diarrhea. It will also cause temporary nausea and vomiting as well as loss of apetite. It causes temporary darkening of the skin with redness, soreness, and skin sloughing in some areas such as the buttocks, groin, back and armpits. This can last up to a month. Unlike the other chemo drugs that are excreted through the urine, the Thiotepa is excreted through the skin, so for the three days it is given and the two days following the last dose, Collin will need to be bathed every six hours. That is twenty baths in five days. Every time he is bathed, his clothing and bed linens will need to be changed as well. We will have to wash our hands before and after we touch him, and wear gloves to handle any bodily fluids. The VP-16, which Collin has had before, will also contribute to the mucositis, and can cause low blood pressure.

These three drugs together are expected to cause severe mucositis. Almost every patient who receives this therapy will be unable to eat and require IV nutrition and narcotics. The mucositis could potentially be so severe that the patient would need to be intubated to protect the airway, but the oncologist said she has only seen that happen once. The combination of the three drugs at high doses can also cause a form of liver damage, but they try to prevent this complication with the use of a low dose heparin drip and very close attention to fluid balance, and the oncologist does not expect this complication to occur. The drug regimen can also lead to multi organ system failure which is usually fatal, but this complication has almost been completely eliminated through modifications of the drug doses related to kidney function. Next week when Collin has his next MRI, he will receive a catheter through which we will do a 24 hour urine collection to test his kidney function. This test and a blood test will help them dose the chemo properly for Collin to prevent this outcome.

Days -2 and -1 are days of rest between the chemo and the transplant, to ensure that the healthy stem cells are not introduced into a toxic environment and damaged.

On day 0, October 13, Collin's stem cells that were collected on Memorial Day will be transplanted back into his body. The stem cells have been preserved and frozen, and will be thawed at his bedside and infused over an hour. Rarely the infusion of peripheral stem cells can result in breathing difficulties from clumps of cells being trapped in the lungs. Many patients get nauseated during the infusion from the preservative used in storing the stem cells. On day +1, another infusion of stem cells can be given if needed, but the oncologist doesn't think it will be necessary. The remaining stem cells will be kept frozen for up to ten years, in case Collin needs them in the future.

Day -1 to day +7 to +10 is called the Aplastic Phase. Collin's white blood cell count will be 0, there will be severe mucositis, and he will need multiple blood and platelet transfusions to minimize bleeding from the mouth and gut. He will need morphine to control pain, and nutrition will be provided intravenously. He will be at very high risk of infections.

Day +7 to day +21 is the Recovery Phase. New cells will begin to grow and the WBC count will begin to rise. The mucositis in the mouth and gut will heal. Antibiotics will be discontinued and the need for pain meds will stop. He will begin to eat again. Most patients are discharged from the hospital during this time. Before Collin comes back home, the house will need to be cleaned thoroughly, carpets cleaned, furnace filter cleaned, etc. We will need to replace the air filter in our car, and only re-circulate the air in the car, not draw in outside air. There is probably much more to this that I will learn about tomorrow.

Day +21 to day +100 is the Outpatient Recovery phase. Collin will continue to make progress and will be followed as an outpatient. His immune system will be quite immature and the risk of infection is high. At some point he will most likely be readmitted to the hospital with a fever. Because his immune system will be so vulnerable, he will need to stay in relative isolation, only leaving the house for medical appointments. He will need to wear a mask when he leaves the house. He cannot be around anyone who is sick, or has been in contact with someone who is sick. He cannot be around anyone who has recently had a live vaccine, or anyone who hasn't been vaccinated. He cannot be around anyone who has shingles or chicken pox, as this could be life threatening. We have to move houseplants to an area he will not spend time in. Fresh flowers, fruit baskets, etc. will not be permitted in the house because of risk of bacterial infections. His food will need to be freshly prepared; he cannot have restaurant food that would have been handled by multiple people. We will most likely have Bailey stay with his cousin for a while so that he can't lick Collin. We won't be able to attend the activites that lead up to THON, but his doctor feels that by February he will be safe to attend THON. There are many more rules and precautions we will need to follow that I will learn about tomorrow.

The oncologist also told us today that once Collin doesn't need blood transfusions and frequent lab draws, his Broviac will be removed because it is a constant risk of infection. She said she is considering keeping him on maintenance chemo for six months once his counts have recovered to hopefully help prevent relapse. Since the chemo would need to be administered intravenously, she would put in a mediport, which is an appliance placed in the chest under the skin through which chemo can be given and blood draws can be done with less pain than a typical needle stick, and it has a lower risk of infection.

I'm sure there is information from today that I have forgotten to include tonight, and I know I'll be getting a lot more information tomorrow. It is a lot to digest and wrap my head around, and I'm exhausted. The thought of Collin being as sick as he was during the first two rounds of chemo, or having to go through Morphine withdrawal again, or losing interest in food after we've worked to restore his interest in eating breaks my heart. No child should have to endure this, and no parent should have to watch their child suffer.

Tuesday, September 21

2010-09-21T22:55:00.004-04:00

I can't believe we've been home a week already! Last Wednesday, a nurse came to the house to draw labs, and by the end of the day I had received a call from a nurse at the clinic saying that Collin's counts were high enough that we didn't have to give any more Neupogen injections. But because of the Neupogen the night before, Collin was miserable Wednesday night, so Collin, Bill and I didn't get much sleep. I tried giving him a dose of Tylenol for the pain, but it didn't make a difference. I ended up giving him a dose of Morphine Wednesday night, and then a few more throughout the day Thursday. Thankfully he slept much better Thursday night, and was more like himself by Friday. Since then, he has enjoyed being home, playing with Neya, seeing her off at the bus stop in the morning and picking her up from school in the afternoon, playing with his toys, and watching videos of kid's songs on You Tube with Bill. Last Saturday Collin turned 21months old, and the four of us took advantage of the beautiful weather and took a nice long walk. We stopped at the park and thought we'd see if Collin would enjoy some time on the swings, but he wanted no part of them. Since I'm not sure what he sees, I wondered if his vision was part of the problem; if I had double vision, I don't think swinging would make me feel very well. So, we gave up on that, put him back in the stroller, and kept walking, which he enjoyed. We also decided to become a Penn State THON family, to help raise money for Childhood Cancer Research, and we are looking forward to experiencing THON in February as long as Collin is healthy enough to attend.

Today, Collin had an outpatient PT eval. His therapist noticed improvement since the last time she saw him. The session went very well, and Collin worked very hard. He did a lot of leaning and reaching, pulling himself up to stand, playing while standing at a surface, and walking pushing a toy grocery cart. He requires less assistance with standing and walking; now when he walks his steps are much more controlled, and he supports his own weight. We just help him steer the push toy or walker, and help prevent it from getting away from him. If he walks holding on to my hands, I'm really just there for reassurance; he walks and supports himself, I'm not holding him up (at least until he gets fatigued). He will have a few more outpatient PT visits before he is readmitted on Oct. 4, and he has an outpatient OT eval next week.

Tomorrow we meet with the oncologist to discuss the high dose chemo and stem cell transplant, and to sign consent forms for everything. I'm nervous, both about the meeting tomorrow, and the admission in October. I'm not looking forward to going back to the hospital and being separated as a family for another length of time. I don't want to see Collin sick again, or come down with another infection. I'm enjoying the little things, like being able to open the windows and breathe fresh air, hear the birds, etc. I've never been this tired in my life, physically, mentally, or emotionally, and finding the stamina to get through the next round is going to be a challenge. I guess in a way it's like running a marathon; you have to push yourself to keep going even when you think you can't continue. Yesterday, we received a special gift from an amazing person who heard of Collin through a friend. This person is a runner, and just ran a half marathon a few days ago with the Leukemia & Lymphoma Society Team. She had pictures of some very special kids in whose honor she was running pinned on her jersey, including Collin, and those photos inspired her and many other wonderful people to keep running and complete the marathon. Yesterday, we received an envelope from her, and in it was a beautiful card, and her medal from the marathon! She sent her medal to Collin, and said he was a hero and an inspiration. I am so touched by this, and I will bring that medal to the hospital and hang it on Collin's bed, as a symbol of his strength and so that I can look at it every day and be inspired by the strength and love of others. When he is old enough to understand, I will make sure he knows how special that medal is!

Tuesday, September 14

2010-09-14T22:22:00.002-04:00

This morning the nurse practitioner surprised us with the news that we could go home today! Collin's counts had come up significantly overnight, so they felt we could safely return home. We have to give IV and oral antibiotics twice a day to get rid of the infections Collin has, and Bill gave the Neupogen shot tonight-he's a pro at it! It is so nice to be home!

Monday, September 13

2010-09-13T21:58:00.002-04:00

This morning I found out that one of the infections Collin has is a urinary tract infection called pseudomonas, which is probably the one that caused the high fever and rigors Saturday morning. One of the broad spectrum antibiotics, Cefepime, will treat it, but it also requires another antibiotic, Ciprofoxacin, aka Cipro. The other infection is strep veridans, which the other broad spectrum antibiotic Vancomycin is treating. Because this is not the first UTI Collin has had, a renal ultrasound was done today to make sure there is no blockage or other anatomical reason for the UTIs. Luckily the ultrasound was normal. An echocardiogram was also scheduled for this afternoon to take a look at Collin's cardiac function in preparation for his final round of chemo and stem cell rescue. Collin was great for both the renal ultrasound and the EKG; he layed still and cooperated for both tests. He really is a trooper! The EKG showed no problems with his heart. Between the two tests, and a PT session where Collin worked very hard walking and going up and down steps, the day was very tiring; poor Collin was overtired tonight and took a while to settle enough to go to sleep. Hopefully he will get a good nights sleep tonight-he definitely needs it!

If all goes well, it looks like we may be discharged by the end of this week. It will be nice to have a little more time at home before the final round; it looks like Collin will be admitted for that on October 4...

Sunday, September 12

2010-09-12T22:34:00.004-04:00

It's been a week since I've updated the blog, so here's a review of the last week...

Last Sunday (Sept. 5) Collin had a mid-morning nap courtesy of the Benadryl and Reglan combination he was receiving to help prevent nausea from the chemo. Again when he woke up from the nap, he immediately started screaming and crying, in a way that is not normal for him. We tried giving a dose of oral Morphine to see if he was in pain, but it didn't help calm him at all. Half an hour later we gave a dose of Ativan, and he calmed down right away. That afternoon, he had the Benadryl/Reglan combination again, but he didn't go to sleep, and he had no more screaming episodes. The pattern that day followed the same pattern as the day before, and I really began to question whether the Reglan caused some sort of disturbance in his sleep cycle that caused him to wake up screaming; the episodes were similar to the night terrors that Neya used to have when she was around the same age. Reglan can cause some pretty bizarre side effects which is why it's given with Benadryl, but I think we'll try not to use it during the next round of chemo. There are other drugs that can be used to prevent nausea instead, so it's not worth the risks.

Monday, Labor Day, was quiet, other than having to replace Collin's feeding tube after it was accidentally pulled out during a vigorous game of Pekaboo between Collin and Neya. Tuesday was another quiet day. Collin's ANC was pretty high, which the attending physician explained was because the Neupogen had caused Collin's bone marrow to push out all of the blood cells that it had been manufacturing. She told me his counts would go down to zero by the next day or so, as expected.

By Wednesday (Sept. 8), the mucositis had started; Collin's breathing sounded kind of junky the night before, and his voice was sounding hoarse. Luckily he only spit up mucous a few times during the day. Then, around 4:00 Thursday morning, Collin threw up, and it was a large enough amount that I had to change him and the bed sheets. Later Thursday he threw up a few more times because of the mucous in his throat. He also received a blood transfusion Thursday because his Hemoglobin was low. Friday I put a mask on Collin and got him out of the room for a while. We were able to go down to the gym for OT; he had a great therapy session and enjoyed getting out of the room for a while.

Saturday morning, around 3:00 AM, Collin's fever spiked like it always does when his immune system reaches zero. His temp was 102.6, so blood cultures and a chest X-Ray were done to check for infection, and he was started on Tylenol and two broad spectrum antibiotics to treat any infection that was brewing. Around 7:00 AM, Collin developed rigors (violent shivering) and threw up; I called for our nurse and checked Collin's temp with my ear thermometer, which read 105. He was immediately given another dose of Tylenol, which thankfully brought his fever down pretty quickly. The doctors explained that sometimes the first dose of antibiotics can cause an inflammatory reaction in the body, which causes another spike in temp. Later I was told that the cultures showed that there was indeed not one but two infections in Collin's blood. He also had another blood transfusion Saturday because his Hemoglobin was still low. Saturday night, one lumen of his Broviac was clogged, and required treatment with TPA, a drug that breaks up blood clots. Most likely the line wasn't flushed well enough after the blood transfusion, which allowed some blood to clot in the line. The TPA had to sit in the lumen for almost three hours, but thankfully it eventually unclogged the line.

Sunday was a quieter day, and Collin seemed to feel a bit better. His breathing sounded clearer, but his voice still sounded a bit hoarse from the mucositis. He received a transfusion of platelets in the morning. He only threw up once; of course it was just after I had finished bathing and dressing him for bed Sunday evening, so I ended up having to do it all over again, and then change the bedding as well.

Sunday, September 5

2010-09-05T21:38:00.013-04:00

I spent today feeling pretty depressed. I know Collin seems to be responding very well to treatment, and he is making great progress in his recovery every day. I am truly grateful for how well he's doing. But I am also terrified. I'm terrified of losing him, and I'm terrified of a future without him. Just because he is doing well now doesn't mean the cancer won't come back. So far there is no guaranteed cure for Medulloblastoma, or any childhood cancer.

Here are some facts about childhood cancer:*

~Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

~Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.

~Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

~Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).

~Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

~The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

~One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

~On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.

~While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

~Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.

~Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is still elusive.

~Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

*(Facts taken from THON's website.)

Everyone knows that a pink ribbon stands for Breast Cancer Awareness, but did you know that a gold ribbon stands for Childhood Cancer Awareness? Millions of dollars are donated to Breast Cancer Research every year. Childhood Cancer Research deserves the same level of recognition and response. September is Childhood Cancer Awareness Month, so I am asking you to help make a difference in the lives of children who are diagnosed with cancer. Consider making a donation toward Childhood Cancer Research at one of these organizations:

Make a donation. Spread the word. Share the links. Help make a difference.

Saturday, September 4

2010-09-04T23:30:00.006-04:00

Friday, September 3-Round 5, Day 3
Collin woke up fussing at 2:20 Friday morning. I changed his diaper (with all of the fluids that he gets all night, his diapers have to be changed regularly through out the night) but he still didn't go back to sleep. I layed down next to him, and every time I opened my eyes, he was laying there with his eyes open. Then around 3:20 he threw up. The nurse gave him his next dose of Benadryl and Reglan for the nausea, and I cleaned him up and tried to calm his tears, but it took about another hour for him to get back to sleep. He was fussy and cried a lot throughout the day. In the afternoon, I questioned whether his gums could be bothering him, so he had a dose of Tylenol, but it didn't seem to help. Then we tried a small dose of Ativan which can help with nausea; it's difficult to know what was bothering him since he can't tell me. The Ativan did seem to help him feel better. Friday night he received Methotrexate, the last dose of chemo for this round.

Saturday, September 4
Collin had another fussy, tearful morning this morning. He seemed eager for breakfast when it came, but then he didn't eat much. After breakfast, I got him dressed and ready for the day, and then he cuddled up on my lap and went to sleep. He napped for quite a while, and then when he woke up, he cried and cried, and was difficult to console. He eventually calmed down, but when I put him into his highchair for lunch, he gagged and spit up. I asked the nurse for another dose of Ativan, and then he seemed to feel better and was able to eat some lunch. This afternoon we took him for a ride around the hospital in the little blue car he liked so much the last time we were here. He seemed to enjoy it for the most part; he really likes going for elevator rides, and points to them every time we pass by them. Tonight he is resting pretty well so far, and is receiving Leucovorin, the rescue agent for the Methotrexate.

Thursday, September 2

2010-09-02T21:38:00.009-04:00

Collin and I definitely enjoyed our short time at home. We did a lot of laughing, and spent as much time together as a family as we could. Monday August 30 was Neya's first day of first grade, and Collin was so excited to go see the big yellow bus when I told him we were taking Neya to the bus stop that he wouldn't eat any more breakfast; he pointed to the door and wanted to leave right away! After we waved goodbye to the bus, we went to Collin's clinic appointment where they took vitals and drew labs for his readmission to the hospital the next day. His weight was up to 25 pounds, which is the highest it's ever been! He's been eating well; he seems to be eating the amount he used to before he got sick. Granted it may not always be the healthiest food, but if he wants to eat something, I give it to him. He still gets the tube feed over night, but I dropped him back down to one can of formula instead of two since he seemed to be eating and drinking so well. Bill and I have also noticed that he seems to be having an easier time handling different textures and larger bites, and seems to be gagging a lot less.

Tuesday (Round 5, Day 0) morning we again put Neya on the bus, and then waited for the hospital to call and tell us they were ready for us to come over. I was hoping it would be early in the day so that Bill could help move us back in before having to pick Neya up from school, and so that hopefully Collin's chemo could get started before 4:00 am. They called us just before lunchtime, so we loaded the cars with the bins of toys, the high chair, and the clothes we would need for the next few weeks and headed back to the hospital. We got settled in and unpacked, had lunch, and later Bill picked Neya up from school and brought her to the hospital. We all ate dinner together, and then Bill and Neya left early enought that they could get home and Neya could get to bed by 8:00 pm. When Bill and Neya left, Collin cried and pointed to the door, probably telling me he wanted to go home too. I just hugged him and told him I was staying with him. The pre-hydration fluids were hung at 5:30 pm, and then the chemo started at 10:00 pm. That night Collin got Cisplatin. We didn't give him his tube feeding overnight to hopefully prevent some vomiting.

Collin slept pretty well Tuesday night, and was very excited to see the breakfast tray come in the morning. He ate all of his breakfast and part of mine, but unfortunately he didn't keep it down. Later he ate just as well for lunch and dinner, and luckily didn't throw up any more. Overall he had a good day Wednesday (Round 5, Day 1). We played a lot, and he had a good nap in the afternoon. He was excited to see Bill and Neya Wednesday evening, and luckily didn't cry when they left. His chemo started a bit later Wednesday night due to an equipment malfunction that caused the Mesna, the rescue agent for the Cytoxan, to spill, so chemo was delayed an hour and a half until they got more Mesna. In the end it was no big deal; the doctor assured me the small delay wouldn't impact the effectiveness of the treatment, and I was glad that Collin got another decent night's sleep. I was afraid that having his blood pressure taken regularly through the infusion of Cytoxan would wake him up, along with having to have regular diaper changes due to all of the fluids he was receiving. So he received Etoposide and Cytoxan, along with the Mesna, and he will receive the same three drugs tonight (Round 5, Day 2).

Today was another pretty good day. Collin seemed a bit more clingy than usual whenever anyone came into the room; usually in retrospect I realize the increased clingyness happens when he's not feeling well. Maybe he was nauseous, or maybe his gums are hurting (he is starting to cut two-year molars). But he played well, pulled himself up to stand during his OT session, and ate well at all meals-with no vomiting today. More than once I noticed his left eye seemed to be turned in less, and when I mentioned it to his oncologist, she said perhaps Vincristine toxicity is starting to wear off (if that's what was causing that eye to turn in in the first place). He also had another good nap this afternoon, and is sleeping peacefully as I type this. Hopefully he will sleep through the chemo tonight, and we will both get some good rest!

Wednesday, August 25

2010-08-25T14:40:00.010-04:00

Due to the effect that chemo can have on hearing, Collin's oncologist sent him for another hearing test yesterday. The results were the same as his previous hearing tests: no hearing loss in the left ear, and some hearing loss in the right ear. However, the hearing loss in the right ear is low frequency, not the high frequency loss that the chemo can cause. The hearing loss in the right ear has been present since the tumor resection, before the beginning of chemo, so the theory is that it is related to the seventh nerve damage that is also responsible for Collin's right side facial paralysis. Since the high dose chemo does not seem to have caused any hearing loss and is most effective in killing the cancer cells, Collin's oncologist has decided the fifth round will be another high dose inpatient round. She knows I want to be home for Neya's first day of first grade on August 30th, so Collin will be seen in the clinic while Neya is in school that day for the admission bloodwork, etc. Then he will be directly admitted to the hospital on Tuesday August 31st to start the next round of chemo. Hopefully it will go as well as the last round and Collin won't get as sick as he has in the past.

I've been telling Neya what an awesome job she's been doing with Collin, loving him, playing with him, helping him, etc. I had signed her up for SuperSibs!, an organization that recognizes the siblings of children fighting cancer. Today she received a trophy from them, and it really made her day! For her first day of school, she needs to bring a picture of something exciting that she did over the summer, but her summer hasn't been like everyone else's. Getting the trophy today was the perfect thing to take a picture of for the first day of school!

So, we will spend the rest of this week enjoying our time together at home before school and chemo start up again. Next week will be hectic for sure!

Monday, August 23

2010-08-23T22:19:00.006-04:00

Collin remained fever free all weekend in the hospital. On Sunday afternoon, the doctors explained that his white blood cell count had increased from 13.5 on Friday to 20.8 on Saturday without the help of Neupogen (the last dose of which had been given Thursday night), which meant there had been an infection of some sort that caused the fever Friday night. By Sunday his count was back down to a more normal 6.1 (normal is between 4 and 10), which meant the antibiotics had helped fight the infection. All of the cultures remained negative almost 48 hours later, so they decided we could go home Sunday evening as long as we kept a close eye on Collin's temp, and called if the fever returned. So after dinner Sunday, we came home once again.

Today I got the hospital stuff re-organized, straightened up the house a bit, and caught up on laundry-all the things I hadn't quite had the chance to finish before going back to the hospital on Friday night. Tomorrow Collin has another hearing test. Based on the results, Collin's oncologist will decide what the next round of chemo will be.

Saturday, August 21

2010-08-21T16:06:00.011-04:00

Thursday night we didn't get a lot of sleep; Collin was very restless, and for a good part of the night was awake every 15 minutes or so. Then on Friday, he couldn't eat since he needed anesthesia for the MRI, so he was very unhappy all morning. After he wore himself out crying because I couldn't feed him, we both fell asleep for a while before it was time to leave for the hospital.

The MRI was scheduled for 1:00 pm. Luckily things were running on time. I signed the usual consent forms, and then stayed with him until they sedated him. Luckily the sedation was painless for him; since he has the Broviac, they just injected Propofol into it, and he fell asleep instantly. The sight of him suddenly going limp and lifeless looking, and then being carried away, always upsets me.

Two hours later, when the scan was over, they brought me to where he was waking up. He woke up pretty quickly and in a good mood, and happily ate a popsicle. We waited for his oncologist to come down and tell us the results, but she was tied up and Collin ran out of patience. He let us know he was ready to go by screaming and pointing to the door. So we went home and waited for the doctor to call us with the results.

A few hours later, one of the attending oncologists called to let us know the MRI results. He said the MRI looked great. I asked him what that meant, and based on what he described and my understanding of certain terminology, it means:
-The abnormal collection of cerebrospinal fluid that collected under the skin around the incision on the back of his head, called a pseudomeningocele, is much smaller;
-There was an area of blood that had collected in the post surgical bed; the area is smaller now and the blood is being reabsorbed;
-The areas of enhancement, or areas that glowed, on previous MRIs that showed nerve root thickening are glowing less, which means the chemo is working;
-There is no evidence of new tumor growth;
-There are now no visible lesions on the spine.
He said the MRI was looked at and discussed by the pediatric neuroradiologist, Collin's neurosurgeon, and his oncologist, and they were all pleased with the results. The scan isn't perfect yet, but it shows improvement over the last one done in June, and shows we are continuing to head in the right direction. All in all, good news! They had also drawn labs before the MRI, and I was able to get partial results before we left. Collin's white blood cell count had gone from 1.0 on Wednesday to 13.5 on Friday. That meant the Neupogen shots were working, and we didn't have to give them anymore. It also explained why Collin had been so restless and uncomfortable the night before-his bones were achy again since his bone marrow was working hard to make new white blood cells.

Later Friday evening after his bath, Collin's head felt warm, so we took his temperature. It was elevated, so I checked with both of my thermometers. I wanted to make sure it wasn't because of the warm water I had used for his spongebath, and I was so exhausted I felt nauseous, so I asked Bill to wake me in an hour so I could check again, and then I went to sleep. Sure enough, when we checked an hour later, his temperature hadn't changed, so I called and spoke to the doctor on call. He said even though Collin's immune system was boosted, his Broviac had been used for the anesthesia for the MRI, and he didn't feel comfortable having Collin stay home in case he had picked up an infection in the Broviac (any time the line is used, there is the chance that it can become contaminated with something that causes infection, especially if it isn't cleaned properly by the person using the line). So, I packed up the essentials, and Collin and I went back to the hospital at 11:00 pm. We were admitted right next to the room we had just left two days before. Of course by the time we were admitted, Collin had no temp at all (the nurses assured me it happens all the time). The usual cultures and chest X-ray were done to check for infection, and Collin was started back on the two broad-spectrum antibiotics.

All day today, Collin has been fever free, and we spent the day doing our best to keep him entertained. I imagine we will be here anywhere from 36 to 72 hours while we wait to see if the cultures show any specific infection. It is frustrating beyond words to be back so soon, but I know we are where we need to be right now. I just really hope we can go back home very soon!

Thursday, August 19

2010-08-19T22:04:00.006-04:00

We had expected to be discharged from the hospital at the end of the week, but yesterday we were told that since Collin's counts had started to come up, we could go home that day! So he had his OT and PT sessions in the morning, and then a blood transfusion in the afternoon. We were finally ready to leave in the early evening. When I pushed Collin in his stroller to the elevators, he was so excited his whole body shook, and he clapped his hands! It was so nice to be home, but by that time of day we were all exhausted, and Collin was fussy. When I went to give him his bath, he was all sweaty from crying, and his Broviac dressing had become unstuck. So even though it was the last thing I wanted to do last night, I had to do a dressing change; at least it went more smoothly than the last one I had to do at home.

Today I had to get re-organized and back into a routine. I was able to get Collin's medication schedule organized more easily this time, I think just because I have more practice handling things on my own than I did when we were discharged in June. Unfortunately we have to give the Neupogen shots again to boost Collin's blood counts (and by "we" I mean Bill!). When I went to draw up the Neupogen for the injection tonight, I didn't understand the amount the label said to give, so I called the 7 West nurses desk. I asked the nurse who answered the phone my question, and luckily our oncologist was right there, so she got on the phone and clarified for me. It's a good thing I called; as it turns out, it appears there was an error on the label, and we would have ended up giving Collin three times the amount we were supposed to. Collin spent the day being fussy and clingy; I guess just like I have to re-adjust to being home, he does too. Hopefully we'll both feel more settled in a few days.

Collin has an MRI tomorrow to see how things look. Based on the results, his oncologist will decide whether the next round will be mostly outpatient like Round 3 was, or if we will be re-admitted for another 3-4 week stay like the round we just completed. Then she expects that we will begin the final high-dose round with the stem cell rescue on October 11. Hopefully we will be finished and home by Thanksgiving. I remember how in April when we were told about the six rounds of chemo, it felt like it would never end, but our oncologist told us it would go faster than we thought. And it has; I can't believe we're more than half way through.

Looking back over the last few months, it's amazing to see how far Collin has come. He's doing really well, all things considered. But there is a part of me that fears it's too good to be true. I don't know how to live with the constant fear that my baby will be taken from me. Every time I think about the fact that he has cancer, it's like a slap in the face. I still cannot believe it. It takes my breath away.

Tuesday, August 17

2010-08-17T21:36:00.005-04:00

Sunday, August 15
Sunday was another medically boring day, which is a good thing. When I was feeding Collin his breakfast, I noticed that his last eyelash that had been holding on for days was gone. Bill and Neya spent the day hanging out with us like they did Saturday. We put a gym mat on the floor and covered it with a sheet so that Collin could play on the floor. When it was time for lunch, rather than picking the mat up, we just decided to eat lunch picnic-style on the floor. Afterwards, we played some more. Bill sat and juggled for Collin, and Collin was so excited watching the juggling that his whole body shook. Then Bill gave Collin the balls so he could have a try at juggling. I'm so glad I grabbed my phone to film it, because it makes me laugh every time I watch it!

Monday, August 16
Collin's blood cultures that were taken when he developed his fever have come back negative for any infection. His fever has not returned, so he was taken off one of the broad-spectrum antibiotics today. On Friday he was also taken off the droplet isolation he had been put on due to his sneezing because that culture was also negative for any infection. So, Collin was allowed to go down to the gym for physical therapy as long as he wore a mask in the hallways (since his immune system is still zero). Collin was excited to get out of the room, and tolerated the mask with no problem. His PT had set up some toys on the floor so he could sit and practice some reaching first, but that wasn't what Collin wanted to do, and he yelled at us to let us know it. His PT compromised by outting the toys on a bench that Collin could stand at. Then she did some walking with him, just holding on to his hands. He saw a big rocking chair he wanted to play on, so his PT helped him climb up and rock on it. Then she tried him on some steps to see how he did. At home, Collin has only ever crawled up the steps. His PT held his hands and helped him walk up and down the steps, and Collin didn't want to stop. He didn't practice walking with his walker at all because he just wanted to go up and down the stairs.

Tuesday, August 17
Collin had a very restless night last night, and was fussy all day today. He cried, didn't eat well, didn't want to participate in therapy (which was a first!), and was very difficult to please. He napped this afternoon, and a little while before dinner I asked him if he wanted to go walk in the hall. He seemed very excited, so I put his sneakers and mask on, grabbed his walker and the IV pole, and headed for the hallway. When he realized I meant he was going to walk in the hallway, he had a fit! He wouldn't budge with the walker at all. So, I carried him and pulled the IV pole along as I walked up and down the hall. It was nice to get out of the room for a little while. Then I put Collin in a toy car that can be pushed, and I pushed him up and down the hall (while still dragging the IV pole along with us). He seemed to like it at first, but then decided he was done. He started crying and tore his mask off, so we went back to the room. He proceeded to throw a huge tantrum when I tried to feed him dinner. Later, when Bill and Neya came, Bill wondered if the Neupogen could be causing him discomfort again, just as it did at home. It seems to be the most logical explanation for such a change in his personality.

Since his counts are starting to come back up, it seems we may be able to go home at the end of this week. Fingers crossed!

Saturday, August 14

2010-08-14T22:53:00.002-04:00

Thursday morning, Collin developed a fever, so as per protocol he was immediately started on two broad spectrum antibiotics, and blood was sent to be cultured to try to identify any infection. He wasn't himself all day, and spent the afternoon sleeping on me. Last night, or early this morning really, around 2:30 am, he woke up fussing, and when I tried to get him back to sleep, I found out he was wet, and so was the bed. Evidently, one of the aides had come in and changed his diaper, but didn't get it on very well. So, I had to change the whole bed and get him cleaned up.

As a result of being awake at 2:30 am, plus just not feeling well, Collin slept in Friday morning. It was actually surprising, because he's usually awake around the same time (around 6:30) every morning no matter what his night is like. But Friday morning he slept in, so I tried to catch the staff as they came into the room and asked them to please be quiet as he was still asleep. Of course they obliged, and said they'd come back when he was awake. But then the man who scans the IV and feeding pumps for inventory came in, and before I could shush him, he spoke in his loud, deep voice, and up popped Collin in the bed. As soon as I looked at him I was shocked that his eyes seemed more turned out than I'd seen them in a long time, but it didn't last. I made a mental note to mention it to the ophthalmologist (I had been waiting a few days for him to come see Collin again). Collin seemed like he was in a good mood, and pointed to his breakfast tray. I hoped it meant he was feeling a little better than yesterday. So I changed his diaper and got ready to put him in his highchair to feed him breakfast, and in comes the ophthalmologist...and his resident. And the attending physician...and his resident. And our nurse. Suddenly, all these peple are there to see Collin, and all he wanted to do was eat his breakfast! It was so incredibly frustrating!

The ophthalmologist started looking in Collin's eyes. I told him I feel Collin sees out of his left eye better, and he will turn his head to use that eye. He agreed that the left eye is the stronger eye, and now instead of patching each eye for two hours a day on alternating days, he wants me to patch just the left eye for two to three hours every day. The purpose of patching is to force Collin's brain to continue to pay attention to the weaker eye, to preserve the vision in that eye. Then, in about six months, he will do a surgery on the eyes to help them turn out to a more normal position, and hopefully Collin will be able to see better. Patching the left eye is not fun for two hours, so I can imagine how well three hours will go over. Poor Collin spends that time basically staring at the bridge of his nose, and, rightly so, is very unhappy the whole time the patch is on.

I also spoke to the ophthalmologist about the fact that Collin's right eye is often very red and bloodshot. I am putting in lubricating drops a few times a day, which seems to help with the irritation. But because the right side of Collin's face has no movement, his right eye is open wider than his left eye, and doesn't always close all the way when Collin is asleep. So he checked to make sure there are no scratches on the cornea that would contribute to the irritation; thankfully there were none. So he recommended a lubricating ointment that can be put on the eye when Collin goes to sleep to help moisturize the eye and reduce the irritation. The ophthalmologist said that the sixth and seventh nerves are close together, and would have both been affected by the surgery. The sixth nerve controls eye movement, and the seventh nerve controls facial movement. Over time, as Collin recovers more from the surgery, both nerves may heal at least a bit, but no one knows how long it will take or how much they will heal. It is so hard for me to wait and see. I wish Collin looked more like himself. It's hard to know that when we're out in public, people stare at him because of how he looks. Thankfully he's too young to notice it, but I notice, and one day Neya may notice.

Today Collin seemed to feel better than he had the last two days. He seemed more interested in eating, and overall seemed more like himself. I commented to his doctor that it even seems like the mucositis is better already, and didn't seem nearly as bad as it has been in the past, and she said she has seen that with other kids as well. She thinks it may be because the first few rounds of chemo are done soon after the tumor is removed, and at that point kids are still compromised nutritionally because they've been vomiting and losing weight due to the tumor. By this point in treatment however, they are stronger nutritionally because they have feeding tubes and/or may be eating better on their own. This is cetainly the case with Collin; he is now eating, still gets additional nutrition through his NG tube, and has put on weight.

Bill and Neya came to the hospital after lunch. We spent the day just hanging out and having fun. Neya had Collin finger painting with Crayola Color Wonder Finger Paints, playing catch, playing on the iPad, and playing with toys. We did a lot of laughing, and had a fun and relaxing day together.

Wednesday, August 11

2010-08-11T22:02:00.006-04:00

My Mom flew home to Houston today, so Bill, Neya, and my Mom stopped by the hospital this morning on their way to the airport. Since Collin walked yesterday using the push toy, I asked them to bring in his walker. The minute he saw my Mom carry it into the room this morning, he was pointing to the door-he wanted to get out into the hallway to walk. I put his sneakers on him, and then since his immune system is back down to zero, I put a mask on him. He resisted the mask since he's never worn one before, but I told him he had to wear the mask if he wanted to go out in the hall to walk. He stopped resisting, so I got the mask tied and out the door we went. He walked from our door to the end of the hall and back a few times-he just wanted to keep going. Even though I could tell he was getting tired, he didn't want to stop. His knees were starting to buckle, and when I picked him up, he wouldn't let go of the walker! We finally got him back into the room to take a break. Luckily his Occupational Therapist came in; he's always happy to see her. He played with the OT and Neya for a while. Then his PT came in, so we went back into the hallway and walked some more. Collin worked very hard on walking this morning, and he never gave up!

Neya lost a tooth Monday night, and on Tuesday morning when I talked to her on the phone, she was so excited that the tooth fairy had come because she wanted to use her money to buy something for Collin. So today she brought her money with her, and went to the gift shop where she picked out a balloon for Collin. It was very sweet, and I was so proud of her. Tonight when Bill and Neya came back to the hospital, Collin had been fussing for a while, but the minute he saw Neya, he sat up, pointed to her, and kept saying, "Hi! Hi! Hi!" He is always very excited to see his sister, and I've told her-only half kidding-that she needs to move in to the hospital with Collin and me! I'm in awe of the bond Collin and Neya have; it's very heartwarming to see!

As I mentioned, Collin's immune system is back down to nothing. He sounds congested at times because the mucositis is starting, and because of the mucus in his throat, he gags easily on food which causes him to throw up what he eats. He has started sneezing, so his nose was swabbed and a culture was sent to see if he has a virus. Because of his sneezing, he is now on droplet isolation as a precaution, which means that the hospital staff now have to wear masks when they come into the room so they don't carry anything from Collin to another patient. This is all on top of the contact isolation that he is always on whenever he comes to the hospital. Since he acquired MRSA when he was in the PICU in April, staff have to wear a gown and gloves when they enter the room, also to prevent them from spreading anything from patient to patient. It will take a few days for the culture to grow if there is a virus, so we won't know until then if he has a cold, some other bug, or nothing.