Yep ... it's been a long time since I've posted any news about Jonathan. I've written about two to three entries but didn't quite like the flow of thoughts, so never bothered to post them online. Hopefully this one flows much better :) I think it is a case of writer's block, coupled with just being exhausted!
We came back from our Make a Wish trip on May 22nd, which also coincided with the last dosage of Accutane. This meant we had reached the end of the ch14.18 (immuno-therapy) protocol and Jonathan was to begin his re-staging / re-evaluation tests later that week. This time he needed four tests - the CT scan (on the 24th), the Bone Marrow Aspirate (on the 25th), the Bone scan (on the 30th) and the MIGB scans (the 31st to the 2nd). On the 1st June, we had found out that his CT scan and Bone Marrow scans came back negative. We had expected all the tests to come back negative - except for the Bone Marrow - so it was interesting that the bone marrow came back negative - since the special staining tests have been really good about showing tumor cells - even though they were in very small quantity.
Getting the news that all of Jonathan's tests came back negative was received with mix emotions. For (almost) any other cancer - I would be jumping for joy and celebrating that Jonathan had been 'cured' - or at least his cancer had gone into remission - but given the likelihood that the bone marrow aspirate might have been a false negative meant I couldn't celebrate as yet. We had already discuss (in the past) the next steps in the event that all his test results came back negative - and the action plan was to repeat the bone marrow tests more frequently for at least two or three more times.
It's now been about a month, and Jonathan is scheduled for his next bone marrow aspirate test later this week - June 29th. I'm anxious to get these results because another negative result will give me a better comfort factor for believing that his cancer has truly gone into remission. The strange thing is that if his test comes back positive - then the medical team will see that as a relapse - when in actual fact (in my mind) it is not a relapse but that the tests done in June were false negatives.
If this test is negative, then Jonathan has two more bone marrow tests to do. One at the end of July and the other at the end of August, with the caveat that the one at the end of August is a re-staging / re-evaluation round, i.e. all four tests would be repeated - CT scan, Bone scan, Bone marrow aspirate and MIBG scan. I think if the results from the July test remain negative - then we'll throw a big party in August - but I'll have to remember to separate that party / celebration from Arielle's birthday party so that Arielle gets her time to enjoy her event.
