This morning was Logan's oncology clinic visit. Adam and I dropped Abby off at school at 8:10, and then headed north to drop the littler boys off at grandma's house. Then it was westward to CHO. They were running more or less on time --which is something of a miracle-- so we were in a room with Dr. T and Philippa fairly quickly.
As expected, Dr. T noted that there were two issues with the MRI. He touched first on the radiation damage along his spinal cord. We discovered that the damage was not only unimproved, but had worsened significantly in the past weeks. It now extends high enough into the upper vertebrae that it could impact the use of his shoulders. It's absolutely chilling to hear a medical professional say something like that about your child's basic functionality, especially a child who was once a singing, dancing, running fool. As expected, he wants to start him on Avastin to help the spine to repair itself. It's not used terribly often for this purpose, but there's good clinical data that says it's a very effective means of treatment for spinal degeneration -- 50 to 75% of patients see a marked improvement in tissue quality within 4 weeks. Since he had the surgery on his mastoid bone just 11 days ago and Avastin can cause issues with wound healing, we'll wait another week and some change before starting him on it on or around the 14th.
This led us to the discussion of the other potential issue discovered on the MRI: The area in his spinal nerve fibers that may or may not be showing increased enhancement or growth. He shared his opinion that the area was unchanged from previous scans, along with the radiologist's differing opinion that it's not the same. The brass tacks of it are that the MRI data is so detailed, the shots --from one session to the next-- are never taken from exactly the same perspective (meaning that if he's lying a half of a centimeter further to the left, it can change the appearance of the films), and the spot is so small that it's hard to tell for sure if there's a real difference. And there's not really a way to tell. The area in question has consistently enhanced over the past several months, but it had been unchanged. Dr. T still thinks it's unchanged based on his read; the radiologist isn't so convinced. So, we just don't know for sure what the reality is here. And as Dr. T explained, Avastin is also an effective means of controlling tumors --there's not really any data on AT/RT, per se, but it's worked for medullablastomas, of which AT/RT is a relative-- so it could have the double punch benefit of repairing the spine *and* protecting against tumor recurrence.
Think that's a lot to read? Try digesting it while you're looking at your kid, a.k.a, the guinea pig of discussion.
So for now, we're just biding our time and praying that Dr. T's interpretation is the right one. He was up front about saying that they just don't know, but he was also up front with his opinion that the area was unchanged. He said that he would've expected to see more than just a tiny change if the disease was recurring, but again... we just don't know.
In positive news, he shared that his brain --where all of this began 15 months ago-- is stable, per the MRI. Thank God! As we headed to retrieve Brady and Isaac from Adam's parents' house, I remarked that there's a great deal of irony in the fact that we began with a huge tumor in his brain, but our problem now is with his spine. It's almost as if we concentrated SO much prayer in his head that we forgot about his vulnerable spine! I don't say that in an accusatory way, nor do I feel like I did anything wrong in requesting prayers last year. No, in fact, I'm encouraged: I asked you all to pull out all the stops and pray for healing in his brain, and it happened in amazing ways. So now, a year later, I'm asking you once again to pull out all the stops for his spine. Please ask for complete and lasting healing of his spine -- for protection from the return of disease, for healing of the radiation-damaged spots. And of course, please keep that blanket of protection over his brain as well. When it comes to my sweet boy, I can't leave any stones unturned or any vulnerable areas uncovered.
Thanks for hanging with me through this loooooong update. And THANK YOU for praying for Logan's healing. Have a great night.