1000 apologies for the lack of blogging since the holidays. You've all been so supportive it's the least we can do to share recent events. One thing we can absolutely and proudly share is that Jacob is as healthy as he's ever been. His response to the treatments has been fantastic, and he's been growing, laughing, eating well and completely lighting us up on a momentary basis. What a CHARACTER! His blood counts have been ideal (i.e. similar to those of a "normal" 2-year old) and he is now walking, quasi-talking (imitating us and drawing on a small but growing vocabulary) and sponging the world around him as any toddler should.
Now by no means are we out of the woods. We have a CT Scan in the morning, which will confirm that while there is presence of LCH in Jacob's system, his liver and spleen have reduced in size, and we can start tapering his treatments. This means that by the spring time if things keep going well we can switch to an oral "maintenance regimen" that will involve less intense drugs and fewer regular visits to the hospital and clinic. We have already removed the ARA-C from the chemo regimen, and we've been giving him the 2CDA on its own every 3 weeks. Where the combination of these two drugs would be followed by a period of 1-2 weeks of fevers, white count dropping to zero, need for transfusions of both platelets and red cells...the 2CDA doesn't slow him down one bit. His appetite and energy level remain normal, and his counts don't drop a bit.
We recently brought Jacob up to the PICU for a visit, as the doctors and nurses there have not seen him since his surgery in October. It is impossible to put into words how much we appreciate the work they did to make sure Jacob could bounce back from that horrific episode. It was overwhelming to see all of these faces of folks who gave their all to make sure Jacob got out of there safely. The most amazing group of people...
So we will promise to be better with blogs, photos, videos and all kinds of fun stuff in coming weeks. We may even backtrack a bit and talk about our experience living in the hospital, our holiday experiences, etc.
We Love you all. Thank you so much for doing your part to make sure Jacob got back on the road to recovery and good health. People have been throwing the word "miracle" around a lot lately. Looking back on where we've been it's hard not to agree. What a miraculous journey this has been...
