Michael has had a bad cough the last few weeks and we were concerned about having him sedated and being able to hold still during the MRI with his cough. We called an anesthesiologist friend of ours to ask his opinion, and he thought Michael would probably be okay, but it's really up to the anesthesiologist on duty. When Liz checked in at the hospital, the anesthesiologists were very concerned and didn't think Michael should go through with the procedure because of his cough. They thought there was a good chance they'd have to put Michael in a very deep sleep and intubate him, which could mean he'd have to spend the rest of the day and all night at the hospital recovering and miss all of his clinic appointments. Liz calmly explained that if Michael didn't get the MRI, he'd miss all of his appointments anyway since they're contingent on the results of his MRI! Not only that, we had no idea how long the cough would last and it could be months before he could get in for another scan. What if they refused to scan him and there was something there that needed urgent attention? The anesthesiologists were very displeased, but agreed to at least try.
Back at home we were doing a lot of praying for Michael that he'd be able to proceed with the MRI. He'd received a priesthood blessing just before leaving for the hospital as well. Miraculously, everything went perfectly during the scan, he didn't cough a single time, and the scan was clean! Still no signs of cancer recurrence!
Survival statistics for Ependymoma are tough to come by, particularly for children like Michael who was diagnosed at such a young age. We've heard some estimates that Michael had about a 20% chance of survival when he finished his treatments nearly 3 years ago. Since Michael has gone without a recurrence for 3 years, his chances of long term survival have increased substantially. His oncologist estimated Michael now has about a 65% chance of survival if he remains cancer free 3-7 years after treatment. It goes up to about 85% if he's cancer free for 7+ years. At that point the chances of his Ependymoma recurring are slim, but he becomes more likely to develop secondary tumors and other complications. So he's never going to be completely out of the woods, and he'll need scans for the rest of his life. But it does mean he has moved on to the "one year club", meaning he only has to get an MRI once a year now rather than every 3-6 months.
One of his doctors visits that day was with an ENT (Ear, Nose, Throat) specialist to evaluate Michael's hearing loss. One major cause of his hearing loss is some blockage in his ears due to radiation induced scar tissue. The doctor recommended putting tubes in Michael's ears for the next year to allow fluid to drain, and to have his adenoids removed to help prevent fluid accumulation in the future. We'll likely do the surgery sometime in August. Incidentally, the doctor also diagnosed his mystery cough as an upper respiratory infection and prescribed some antibiotics. We had taken Michael into his pediatrician a few weeks ago to try to get the cough diagnosed and taken care of before the MRI, but the pediatrician misdiagnosed the problem as allergies since Michael's lungs were clear. Also, the ENT specialist said that knowing now what was causing Michael's cough, he would have strongly advised against the MRI!
Michael had appointments with a host of other doctors and specialists that day, including a neurosurgeon, ophthalmologist, psychologist, oncologist, endocrinologist, and rehab specialist to name a few. The one appointment we weren't able to schedule was a hearing screening, so Liz was planning to have to bring Michael back later. Fortunately, the ENT decided to do a hearing screening as part of his visit, so even that was accomplished! Another answer to prayers!
As expected, Michael registered mild to moderate hearing loss in both ears again, which hopefully the tubes in his ears will help mitigate. On a positive note, the hearing screening ensures that Michael will be able to attend his sign language preschool again in the fall. We were getting a lot of push back from the school district about keeping Michael at McGraw since hearing loss isn't considered his primary disability. Never mind that he has many disabilities, and that sign language is his primary form of communication. So having evidence of hearing loss actually helps our cause in a big way.
Another thing we learned is that the radiation damage to Michael's pituitary gland means he isn't getting proper hormone levels. One hormone we'll need to address in the near future is growth hormone. Soon we'll need to administer daily growth hormone shots to Michael during his growing years, which could be the next 15-20 years. We're not looking forward to that. But one potential upside besides helping him grow properly is it could help improve his energy levels.
Overall, the doctors were very pleased with Michael's progress. They believe that eventually he'll learn to walk and talk. It's still unclear how well he'll be able to do either of those, and how well he'll be understood when he does talk. He continues to make slow progress, but it's progress in the right direction and his rate of improvement in the last few months has increased. He's more interested in talking now, and between his speech and signs we can understand a lot more of what he's saying than ever. He's such a brave, miraculous little boy who continues to beat the odds. We're so happy to have him in our family!
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| Yea for a clean scan!!! |
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| Some improptu family pictures we took one Sunday after church |
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| Brooke is always so excited for bath night she doesn't bother waiting for us to help her get undressed |
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| Spencer and Michael clowning around |
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| This volleyball net was a Christmas present. We finally had a sunny weekend we could set it up |
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| Taking a break during a bike ride to the Fort Collins temple site |
