Thursday, November 14, 2013 -- Big Changes

Since my last update, Collin has had seven acupuncture sessions. He tolerates them well. He has just a tiny bit of anxiety as the needles are placed (they are very tiny needles, and I use a little lidocaine cream to numb the sites that the needles go into, so I think it's more the anticipation than discomfort that makes him anxious) but as soon as they are in, he relaxes and dozes off. Then when the doctor comes back and removes the needles, Collin sits up and says "I didn't feel a thing!" He has been going twice a week, and although he's been on a little break while the doctor is out of the country, he will resume acupuncture next week. I definitely think the acupuncture is making a difference; Collin's right eye seems to be blinking more during the day, and closing more when he sleeps. I used to have to clean a lot of matter out of his right eye in the morning when he wakes up, but over the last few weeks I've noticed his eye is now almost completely clear in the morning. This makes both Collin and I happy, because my having to clean his eye tended to be a big ordeal, so neither of us misses it! I have also noticed more muscle tone in the right side of Collin's face, especially in his cheek around his mouth. His face looks a bit less droopy and more symmetrical. At first I thought maybe I was just imagining it, but a few other people have said they can see the change too. 

Relaxing during acupuncture

Right eye looking mostly closed during sleep

The right side of Collin's face looks less droopy

Collin also had his 6-month audiogram (hearing test) in the beginning of October. There were no changes, so his hearing is stable. He did however need a larger mold for his hearing aide, because he seems to have gone through a bit of a growth spurt! I finally had to take him shopping for some bigger clothes, which I hadn't had to do in over a year, so I wasn't surprised when the hearing aide mold suddenly wasn't fitting correctly anymore. It took a month for the new mold to come in, so Collin didn't wear his hearing aide for that time, but since he really only needs it when there is a lot of background noise, he didn't seem to have any trouble hearing without it. He was also fitted for new Sure Steps orthotics for his feet due to his growth spurt. At his 6-month endocrinology appointment yesterday, the doctor was pleased with how he's doing. He's in the 75th% for weight and the 5th% for height.

On Wednesday November 6th, Collin had his "routine" quarterly MRI. As always, Collin was very brave, and handled everything like a pro. It's tougher as he gets older; he understands more of what's happening and asks more, sometimes tougher questions. Nothing gets by him. He knew we were going to clinic first thing that morning to get a "tubie" in. This means that the anesthesiologist can put IV propofol directly into his mediport to put him to sleep instead of first using gas to put him to sleep and then putting an IV into his arm to put the propofol into. Collin hates the gas mask being put over his face, and he checked with me over and over to make sure that they wouldn't use the mask. He did great in clinic having his port accessed, but as we made our way down to radiology I could tell he was nervous. He wanted to walk (not ride in the stroller), but he walked very slowly. He kept making sure I was going to be right there with him, that I wouldn't leave his side. He said, "You're always with me, mom." Once all of the paperwork was signed and they were ready to administer the anesthesia outside of the MRI room, he bravely sat on the gurney. When he realized I couldn't be in the MRI room with him, even though I told him he'd be asleep by then, his little lower lip quivered. But he never cried. I hugged him and talked to him while the propofol was given, and kissed him as he went to sleep. Then as I left the room, I couldn't hold back my tears any longer. It never gets easier watching your baby be put to sleep, no matter how many times you watch it or how brave he is. 

Here is Collin bravely having his port accessed:

After the MRI was finished, I sat next to him as he began to wake up. It didn't take him long to wake up and start asking for lunch. Then his nose started bleeding. He was on his last round of accutane, so he was dry to begin with, and the oxygen they keep on him during the MRI dried him out even more. His nose bled fairly heavily for nearly half an hour, and they were getting ready to take us to the emergency department by the time it finally stopped. Collin was annoyed that the nosebleed kept us in recovery a bit longer and delayed his lunch, so he was happy to finally be able to eat and then go home.

The radiologist who was so great about reading the MRIs so quickly recently moved to another state, so I wasn't sure how quickly our oncologist would have the results. That evening she called to tell me it hadn't been read yet, but that she looked at it herself and didn't see anything concerning. This was reassuring, but it was still nice to hear an official "all clear" from her the next morning. So, we can breathe a bit easier until the next MRI in February. 

A little Sweet Frog to celebrate a clear MRI

Last Saturday evening, Collin took his last dose of vorinostat, and Monday he took his last dose of accutane. He has completed twelve rounds of maintenance chemo since finishing radiation, and is officially finished with treatment. I'm very happy about this, but very nervous too. We've been here twice before, so I'm not ready to celebrate just yet. Maybe after we've reached a year or more without relapse, I won't feel like I'm tempting fate by throwing a party. It feels very strange not to have to go to clinic every two weeks for lab work; now we don't have to go back until December to have his port flushed (this needs to be done every four to six weeks). Dr. Comito hasn't made plans yet to remove his port; she said we're leaving it in for a little while longer as kind of an insurance policy (the last time his port was removed, it had to be replaced a month later due to relapse), and I'm fine with that for now.

Taking his last dose of vorinostat

There have been some pretty big changes recently in Collin's therapies as well. Over the summer he was evaluated at the Capital Area Intermediate Unit. This means an evaluation of Collin's developmental level was done to determine what, if any, support services he could benefit from to help him get ready for school. The areas that were evaluated included child development, speech and language, occupational therapy, physical therapy, psychology, audiology, and vision. The evaluation determined that Collin would benefit from further speech, occupational, and physical therapy, and possibly some vision support. Since he qualified for early intervention services, an individual educational program (IEP) was developed. So, in addition to the occupational and physical therapy that Collin is getting at Hershey Medical Center, he began OT, PT, and ST through the IU. Since Collin's articulation has greatly improved, his speech therapist at Hershey discharged him from her care once he was scheduled to begin services at the IU. We've worked closely with her for three years, so it was very difficult to say goodbye to her, and I will always be grateful for the difference she has made in Collin's life. 

The speech therapy at the IU focuses on areas such as cognitive aspects of communication (e.g., attention, memory, and problem solving), social aspects of communication, language comprehension, expressive vocabulary skills, following multi-step directions, etc. For a few weeks, Collin had the IU occupational and physical therapies on Thursday mornings, and the IU speech therapy on Friday mornings. Then, after seeing Collin a few times, the speech therapist determined he would be a great fit for the language group that she runs on Thursday mornings. In this group, the skills that she was working on with Collin are practiced with a small group of up to six other peers. So, it's more like a preschool setting with a small group of four-year-olds, where they practice things like listening, recall, following directions, socializing with others, etc. This type of setting will be extremely beneficial to Collin, because his exposure to other children his age has been so limited before now. It will help prepare him for starting kindergarten next year too. While he is in this language group for 2.45 hours every Thursday morning, the OT and PT will see him there as well. So Thursdays will be busy and somewhat tiring for Collin, but they will be very fun for him too. This morning was his "first day of school," and he's been talking about it and looking forward to it for over a week. He picked out a backpack, he's been asking questions, making sure I would drop him off and pick him up, and reassuring himself (and me) that he would come back home afterwards. This morning when I dropped him off, he put his coat and backpack in his cubby, and didn't look back. As wonderful as it's been to see his excitement, it was a tough morning for me. Sure, it's hard for many parents to send their little ones off to school for the first time, and I remember shedding a few tears as I sent Neya out into the big world. But Collin...well he's never been away from my side as I've watched him fight so hard with everything he has just to live, and I've been by his side every moment to cheer him on and encourage him, and celebrate his victories. So as happy as I was to see his excitement to go to school and make new friends, I was also sad to turn him over to someone else for a few hours, and not be right next to him to watch him learn and make progress and have fun. But in the end, Collin had a fantastic morning (of course he can't wait to go back!) and even though I shed more than a few tears, I survived. After celebrating his first day of school with a special lunch, Collin recovered from his busy morning with a nap. :)

All ready for his first day of school

After school we came home to a great note from Neya

Going to school and having 3 therapies in one day is tiring!

So, over the last month and a half, there have been lots of changes. We've added appointments to our busy schedule, and taken others off. We've come to the end of treatment, and now we just wait and watch. Collin is slowly doing more "normal" kid activities, like participating in his very first kid's race at the THON 5K at Penn State, attending his first Hershey Bears hockey game, and going to "school." Change, especially a lot of changes in a short amount of time, is unsettling, but I'm trying to focus on the positives as we adjust to yet another "new normal." It is a blessing and an honor to watch this boy of mine grow and experience new things, and touch many others as he does.

Collin captured many hearts as he ran in his first THON 5K kid's race

First Hershey Bears hockey game

Halloween 2013 as Spiderman