Friday, December 30, 2011

Gamma Knife

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

Thursday, December 29, 2011

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, December 21, 2011

Wednesday Update

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

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

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

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!

Saturday, December 10, 2011

Friday, December 9, 2011

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

Monday, December 5, 2011

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

Tuesday, November 29, 2011

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, November 27, 2011

Sunday Update

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

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

Saturday, November 19, 2011

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

Sunday, November 13, 2011

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

Tuesday, November 8, 2011

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.

Saturday, November 5, 2011

Friday, November 4, 2011

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. 

Friday, November 4, 2011

Thursday, November 3, 2011

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

Wednesday, November 2, 2011

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

Saturday, October 29, 2011

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

Thursday, October 27, 2011 Recurrence, Options

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.

Wednesday, October 26, 2011

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

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

Tuesday, October 25, 2011

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

Sunday, September 18, 2011

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

Monday, September 12, 2011

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

Friday, September 2, 2011

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

Monday, August 15, 2011

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

Thursday, July 21, 2011

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!

Tuesday, July 19, 2011

Monday, July 18, 2011

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

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

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.