Collin had a good weekend, and thankfully didn't catch strep throat from poor Neya, who felt pretty crummy, especially Saturday. The MRI was scheduled for 8:00 am, so 6:00 am was the cut off for clear liquids and medicines. At 6:00, I rubbed Collin's head and kissed his cheek, and whispered that I needed him to wake up so I could give him his medicine (Zantac, and a stress dose of hydrocortisone since he'd be getting anesthesia). He opened his eyes, sat up, and swallowed the pills in two mouthfuls of Jello. Just like that, no fuss, no complaints. I asked if he wanted anymore Jello, since it was the only thing he could have, right then, until after the MRI. He shook his head, and then said, "I'm done sleeping. What can I do?" He handles morning way better than I do!
We got to the hospital, stopped by clinic to have his port accessed, and headed down to radiology. Collin was calm, but kept making sure I wasn't going to leave him. I reassured him I'd be with him until he was asleep, told him I wasn't allowed to go into the MRI room, but that both Bill and I would be there when he woke up. Then he enjoyed doing stickers while we waited for his turn. When they were ready for him, he walked to where they needed him, watched them put the propofol in his tubie as I hugged and kissed him, and that was it. Since they were only scanning his brain this time, it was quicker than normal. I went upstairs, met Bill (he came to the hospital after getting Neya on the school bus), and ate breakfast. By the time we got back downstairs, we only waited a few minutes until they came to get us. We waited with Collin as he woke up, gave him a snack, got him dressed, and then we were on our way.
This afternoon we got the call that the MRI was all clear. I was definitely relieved! And since the Zantac seems to have helped the vomiting, Dr. Comito is going to keep Collin on it and not put him through a GI study for now. As of Sunday night Neya was on antibiotics for 24 hours, so she's not contagious anymore, and she's feeling better, so today was a win all around!!
Monday, April 14, 2014
Saturday, April 12, 2014
Saturday, April 12, 2014
A Quick Update
When I picked Collin up from his group at the IU Thursday morning, his speech therapist told me he had been unsteady on his feet that morning, stumbling a few times and falling once. Hearing that, and thinking about the recent vomiting had me in panic mode Thursday afternoon. Even though logically I knew he probably had an off day and the unsteady balance and recent vomiting were most likely not related, I still let the fear get the best of me. Later I realized too that we're about a week away from the four year anniversary of his diagnosis, so I'm a bit more edgy than normal. Thursday afternoon I got a call from radiology confirming his MRI; somewhere along the line the schedule changed, so the MRI was changed from Friday 4/18 to Monday 4/14. Then I heard from Dr. Comito, who told me that Dr. Iantosca (Collin's neurosurgeon) could see him in brain tumor clinic Friday afternoon.
I felt calmer Friday. Collin had PT and OT in the morning, and worked hard, as he always does. There was nothing out of the ordinary with his balance, personality, etc. Friday afternoon we went back to clinic. Dr. Iantosca checked him out and didn't find anything alarming; in fact he was very pleased with how Collin is doing. Since starting the Zantac Monday night, Collin hasn't thrown up, so most likely the cause of the vomiting will turn out to be reflux, motility problems, or scar tissue as a result of radiation. So, Collin will have the brain MRI Monday morning, and then Dr. Comito can schedule the GI study.
When I picked Collin up from his group at the IU Thursday morning, his speech therapist told me he had been unsteady on his feet that morning, stumbling a few times and falling once. Hearing that, and thinking about the recent vomiting had me in panic mode Thursday afternoon. Even though logically I knew he probably had an off day and the unsteady balance and recent vomiting were most likely not related, I still let the fear get the best of me. Later I realized too that we're about a week away from the four year anniversary of his diagnosis, so I'm a bit more edgy than normal. Thursday afternoon I got a call from radiology confirming his MRI; somewhere along the line the schedule changed, so the MRI was changed from Friday 4/18 to Monday 4/14. Then I heard from Dr. Comito, who told me that Dr. Iantosca (Collin's neurosurgeon) could see him in brain tumor clinic Friday afternoon.
I felt calmer Friday. Collin had PT and OT in the morning, and worked hard, as he always does. There was nothing out of the ordinary with his balance, personality, etc. Friday afternoon we went back to clinic. Dr. Iantosca checked him out and didn't find anything alarming; in fact he was very pleased with how Collin is doing. Since starting the Zantac Monday night, Collin hasn't thrown up, so most likely the cause of the vomiting will turn out to be reflux, motility problems, or scar tissue as a result of radiation. So, Collin will have the brain MRI Monday morning, and then Dr. Comito can schedule the GI study.
Wednesday, April 9, 2014
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!
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!
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