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.