Friday, July 27, 2012

Overall, things have gone very smoothly so far at MD Anderson. The whole medical center in downtown Houston, where MD Anderson is located, is very large and consists of many different hospitals and clinics. Things seem very organized, and we even have access to Collin's appointment schedule and records online.


Thursday we went to MD Anderson Cancer Center for the radiation consultation. We met with Dr. Mahajan, the radiation oncologist who will be overseeing Collin's radiation treatment. Collin will have 28-30 radiation treatments, under anesthesia, each one lasting about an hour, Monday through Friday, for about six weeks. The first four weeks will be radiation to his whole brain and spine (36 CGE), and the last two weeks will be a higher dose (54 Gy) "boost" delivered to the areas where the relapsed tumors currently are. Possible side effects during radiation include hair loss that may take a long time to grow back and may grow in patchy and/or a different color; sunburn-like skin irritation on the scalp and spine; nausea/vomitting; and low blood counts that may require blood transfusions. Side effects that may occur in the weeks, months, or years after radiation include shorter stature due to damage to the spine and pituitary gland; cognitive delays; hearing loss; fatigue; and secondary tumors in the brain or spine.

Today got off to an early start because Collin had to have anesthesia this afternoon for his radiation simulation at 2:30 pm. I woke him at 6:00 am so he could be finished with breakfast by 6:30. Between 6:30 and 10:30, he was only allowed 4 oz of clear liquids, and then couldn't have anything to eat or drink after 10:30. Despite not being able to eat all day, he handled it well. He was put to sleep, had a CT scan, and was fitted for the metal mesh mask that will be used to bolt his head to the table so that it cannot move during the radiation. Then when he woke up, we sat in the waiting room and fed him lunch before the drive back to my parents' house.


Originally we had planned that Collin and I would stay at Ronald McDonald House once his treatments started to reduce our commute time back and forth, especially during morning rush hour. However, so far his radiation is scheduled after lunch and the drive during that time of day hasn't been too bad, so we're going to see how it goes commuting every day. If necessary, we can always make arrangements to stay at RMH at a later date.

We had been under the impression that Collin would be admitted Monday for his IV chemo, but although we have questioned everyone we've spoken to, we have not been able to get any information about this. However, Collin's next appointment is now on Monday, with a pediatric neuro-oncologist. During our consult with Dr. Mahajan on Thursday, we had discussed whether Collin would be given any chemo during the radiation (sometimes certain chemos are given during radiation to further sensitize the tumors to the chemo). She wanted to talk with the neuro-oncologist, because Collin has already had a LOT of chemo in his short life. We also discussed how the low blood counts and possible neutropenic fever following the IV chemo could delay the start of radiation. We are now speculating that the IV chemo planned for Monday may not be given, and instead a different chemo may be given with the radiation, which is scheduled to start Thursday, August 2. I guess we'll find out Monday.

On Tuesday Collin has an appointment for neuro-cognitive testing. This will provide a baseline against which future periodic testing can be compared, to see how the radiation affects him cognitively. I also noticed on the schedule that there is a baseline hearing test scheduled in the near future. Between radiation appointments, weekly clinic appointments, and other miscellaneous appointments, our time in Houston will be pretty busy!

Tuesday, July 24, 2012

I'm sorry I haven't updated before now! The week leading up to our trip to Houston was incredibly busy, and now that we're here, I've finally had a few days to relax, which hasn't happened in quite a while. I've been taking full advantage of it! Since arriving on Friday, we've pretty much just been "home" at my parents' house, just enjoying some down time and enjoying time together as a family. Even though I'm forty years old, there is just something nice about being at my parents' house, and feeling...taken care of, safe. It's...luxurious!

A few days after Collin's MRI, Collin's oncologist at Hershey let us know that the doctors at MD Anderson agreed with her suggestion of doing another round of chemo during this time before the radiation begins, so that the tumors don't have a chance to grow. Collin is on ten days of oral chemo (Temodar & Etoposide), which started the night we arrived in Houston, and then he will be admitted to MD Anderson on July 30 for three days for IV chemo (Cytoxan). She also let us know that the cytology from the lumbar puncture on the 13th was negative, which is what we expected, but it's always a relief to hear. She was unable to take a CSF sample from the ommaya reservoir on the 13th, so we went to clinic on Tuesday the 17th for that to be done. Collin handled it like a champ as always. He was not bothered at all by the fact that a needle was being stuck in his head; he actually started to fall asleep during the procedure. What made him angry was that he had to lay flat for about 15 minutes afterwards!

The rest of the week was spent running last minute errands, finishing laundry, cleaning up the house, packing, etc. I am not a fan of traveling, and I like to leave the house clean and in order so I don't come home to a mess to clean up, so I add to my own anxiety trying to get everything done. But it always works out, and I got everything done that I wanted to or had to before we left. One of the hardest things was saying goodbye to our dog for two months. He's getting on in years, and has had some health issues over the last few months, so leaving him was extra hard. Neya and I cried as we said goodbye, and we miss him a lot. We are blessed to be able to leave him with great friends who will take excellent care of him. We are also blessed to have great friends taking care of our house for us. I managed to get our suitcases packed AND keep them under the airline weight limit! We left our house Friday morning with plenty of time to get to the airport without having to worry about getting caught in traffic and getting through security. I was a bit nervous about getting through security with liquid medication that had to be kept cold, but everything went very smoothly. The flight went well, and overall both Neya and Collin did well on the plane. Collin was asleep before we even took off, and slept for about half the flight. He was definitely ready to get off the plane by the time we landed though!

Houston has been warm and humid, and since I am always warm, I'm definitely feeling the heat! We have encountered many kind and welcoming people, from my parents' friends and neighbors to a mom on our flight who invited us to a playdate, and a lady at the grocery store who asked if she could buy Collin a hot chocolate because she just wanted to do something nice for him. We took Collin and Neya to a house not far from where my parents live that has some goats, horses, and a longhorn steer on the property, and we stood by the fence and watched them for a few minutes. Collin was amused by the goats, and made the pretty accurate observation that they sound like sheep. He also enjoyed seeing the horses when they came over to the fence, although he was a bit intimidated by their size. We picked up our rental car yesterday, found our way to the Proton Center, and toured Ronald McDonald House. This evening Bill and I are going out to dinner by ourselves, for the second time in the last two years! Our consult at the Proton Center is Thursday morning, so I will update as soon as I can after that. As always, thank you for the prayers, positive thoughts, emails, etc. over the last few weeks!! They mean a lot to us!!

Friday, July 13, 2012

Collin had his MRI and lumbar puncture today. The MRI was scheduled for 1 pm, but it was about 2:30 when he was finally put to sleep. The only thing he could have for breakfast was jello, so by 2:30 he was starving, but other than begging to eat a few times, he handled the delay pretty well.

Collin's oncologist took us to the radiologist's office before Collin woke up so we could see some of the MRI pictures. His preliminary read of the scan is that the largest tumor, in the floor of the fourth ventricle, is significantly smaller, and we were able to clearly see that for ourselves on the MRI. The other tumors are either slightly smaller or stable, so needless to say I'm thankful for the results. While we were there, I asked to see the original MRI from 2010. The radiologist pulled it up for us, and the minute I saw it I cried. The original tumor was so big, and the ventricles in Collin's brain were so enlarged...it was just unbelievable to see. For the millionth time I thought about how much pain Collin must have been in by the time he was diagnosed, and it breaks my heart. I remembered how that morning of April 22, 2010, a few hours before that MRI, I called my parents and told them they had to get here, because I knew my baby was going to die. As we looked at the image of that original tumor this evening, and I told Collin's oncologist about that morning in 2010, she said he probably would have stopped breathing had the tumor not been found when it was.

Once again the cancer has responded to the round of chemo Collin had a few weeks ago. Since it will be a few weeks until the radiation starts, Dr. Comito feels it would be a good idea to do another round of chemo during that time so the tumors aren't given a chance to grow again. Collin could do ten days of oral chemo beginning sometime next week, and by the time he'd be ready for the Cytoxan, we'd be in Houston and he could be admitted to MD Anderson for a few days for that part of the chemo. Dr. Comito is going to talk to the team in Houston to make sure they are in agreement with that plan. We may also have to see Collin's neurosurgeon next week so he can take a CSF sample from Collin's ommaya reservoir for testing.

Thank you for all of the prayers and good wishes today. Please keep them coming, for Collin and all of the other fighters in this battle against childhood cancer. Please remember the families of the fighters who've earned their wings, especially sweet little Maddie, who was about a month younger than Collin and had beautiful blue eyes; she passed away this morning with her parents by her side. And please keep Collin's oncologist in your prayers as well as she enters the next phase of her own battle against cancer.

Many have asked me about upcoming fundraisers, so here's info for the next one. Please spread the word, and thank you for your support!!

Sunday, July 8, 2012

Collin has been feeling good and doing well over the last few weeks. We did twelve days of G-CSF shots to help boost his white blood cell production, and he handled every single shot like a champ...bravely and with very few tears. His blood counts were checked every few days in clinic, and on June 29 he had a platelet transfusion. Everything went smoothly, and with the help of the Tylenol and Benadryl used to prevent an allergic reaction, he slept through most of the hour-long transfusion. I had to wake him up so we could go home, and he must have been in a pretty deep sleep because he had an all out tantrum when I woke him. Since his platelets were low, he ended up with a nosebleed because he was crying so hard. Thankfully we were still in the clinic when it happened, and not in the car! The next day, we returned to clinic for a three-hour blood transfusion, which was uneventful. Throughout the week I monitored Collin's temperature because he usually ends up back in the hospital with a neutropenic fever about a week or so after higher dose chemo. Thankfully his fever never went high enough to warrant a re-admission!

6/28/12-Sleeping during platelet transfusion

6/29/12-Sleeping during blood tranfusion

6/29/12-Collin's & my snowmen made out of Model Magic

6/29/12-Collin was very brave as his port was deaccessed

Collin's hair began falling out thanks to the chemo, so once again we took him to the barber and had his head shaved. I think it will be a long time until he has hair again, because the radiation would also cause it to fall out, and it can take a long time to grow back after radiation, if it comes back at all. We also took Collin to see his first fireworks last week. I was slightly concerned that the sound would bother him since he is so sensitive to loud noises, but we were a few blocks away from where the fireworks were being set off, so other than being tired, he enjoyed them.

7/2/12-Last moments with hair

7/2/12-Sitting very still for the barber

7/2/12-A new look, yet again

We will fly down to Houston on July 20, and our consult at MD Anderson Cancer Center has now been changed from July 23rd to July 26th. The radiation won't start until the beginning of August, and I think it will last about two months. Unfortunately Neya's first day of school is August 27. Right now we think Bill, who will be home working for the majority of the time the rest of us are in Houston, will fly down to bring Neya home in time for school, but that means Collin and I will be apart from her and Bill for most of September. These next two months are going to be difficult since the four of us won't be together, but I keep telling myself that although it will feel like forever, two months isn't long in the scheme of things.

Between all of our activities, doctor, and therapy appointments, as well as trying to get things ready for our trip, the next two weeks are going to fly by. Collin has his next MRI this Friday the 13th, and I'm trying not to be superstitious. Please say a prayer that the MRI will show improvement after this most recent round of chemo! I will share the results as soon as I know them!

7/8/12-Napping in the bean bag chair