Wednesday, April 9, 2014

Wow, I've been so busy with the holidays and our appointment schedule that I didn't realize it's been so long since I've updated. I'm happy to say Collin has been doing very well! We celebrated his fifth birthday in December. Every birthday is a blessing, and every day we get to spend with Collin is a gift!

Over the last few months we've had the opportunity to help give back to the Four Diamonds Fund by sharing Collin's story at a few mini-THON assemblies, and attending a few local mini-THONs. Neya's elementary school had their first mini-THON in January, and it was an amazing success. They raised an incredible $20,000, which was $15,000 over their goal!The West Hanover Elementary students worked hard and did a wonderful job! We are blessed to live in such a supportive and caring community! Then in February we attended our fourth THON at Penn State University. It was another amazing weekend, and once again Penn State outdid itself; this year they raised $13.3 million for the Four Diamonds Fund!

Collin continues to receive acupuncture once a week, and tolerates it very well. He even decided he doesn't need lidocaine cream before the tiny needles are inserted; as usual, he amazes me with his bravery. He still has OT and PT at Hershey once a week, and continues to make progress and get stronger. He has now been attending the language group at the Intermediate Unit once a week for the last few months, and he loves it. He has fun when he's there, and he always looks forward to working on his homework. The work can be challenging for him, but small improvements are exciting to see. It's been interesting for me to see how simple tasks or abilities that we take for granted can be more difficult for Collin to learn; once again it puts life into a new perspective.

Collin's latest MRI was in the beginning of February. It was his first MRI since finishing a year of maintenance chemo in November, and I was nervous (historically he has relapsed when he's been off chemo for a short time). I'm happy to report that Collin reached another milestone...the MRI was clear, despite being off chemo for three months!

Over the last two months or so, Collin has had random episodes of vomiting, which have more recently been increasing in frequency. He has a sensitive gag reflex because of where his tumor was, so if he is congested, I'm not really surprised if he gags and throws up. Unfortunately it's just a fact of life for many brain tumor survivors. But the episodes are happening more often even though he's not congested. Logically, I know his scan in February was good, but I'd be lying if I said I'm not scared on some level. We had a monthly clinic appointment Monday, so we discussed it with Dr. Comito. She doesn't think he has relapsed, but knows GI will want to rule that out first, so he will have an MRI of the brain only on April 18 (he was due for brain and spine in May, so she's just skipping the spine this time, and will do both again in July). She said hypothyroidism can cause motility issues, so she checked his thyroid with bloodwork, but that looked normal. After the MRI she will refer him for a GI study to see if there is a motility problem, or a problem with the valve between the esophagus and stomach causing reflux. In the meantime, she gave us a Rx for Zantac to see if that helps. He's been taking the Zantac for 48 hours now, and hasn't thrown up in that time. Hopefully we're on the right path!

Collin had his (every six month) hearing evaluation today. We were happy to learn that his hearing is stable! It's been stable long enough that now he doesn't have to have another hearing test for a whole year. We just have to go back in six months to have his hearing aid checked. I'm thankful for another small victory!