What's Next

We met last week with JR's team to get his stitches out and to hammer out a new plan of attack. Interestingly enough, the neurosurgeon (Dr. Souweidane) actually took the time, sat in a little office and took JR's stitches out himself. He even went out and got him an apple juice when he said he was thirsty. When we walked into the office, Dr. Souweidane had an MRI scan on the computer screen and JR asked him, "Is that a brain?" to which the Dr. answered, "Yes, in fact, it's YOUR brain." I was a little worried about how JR would feel but went on to ask some great questions and even wondered if those two protruding things in the front were his eyeballs and was fascinated to learn that they were. The scan looked great and JR even wanted to know what it looked like before the operation and the doc was great with him and showed him before and afters, etc. I was relieved that his simple curiosity didn't turn into something that he really didn't want to know. All in all, he did great and they barely shaved any hair this time so you'd never really know that he had stitches.
I also met with the oncology team while JR had some play time in the playroom. He created this huge crab picture that apparently some artist studio in Brooklyn is supposed to add to some big mural. We're supposed to visit the studio possible in May. We're calling JR the guest artist for the day.
The new plan is starting next Wed. (4/2) for an infusion of antibodies, then every two weeks after that, he'll have an infusion of antibodies on Wed. followed by chemo on the following day (Thurs.). So in other words, every 2 weeks, he'll be there for 2days in a row (except the first time he'll only have 1 day). This will last for 4 to 6 months (??) or until something changes. Hopefully he'll be able to handle this as well as he did with the last chemo (doctors seem to think that it should be roughly equivalent). We'll keep close track of blood counts, etc. just like before. The biggest difference to him will be that the chemo will no longer be oral but that's why we have the port. I just hope and pray with all I have that this will do the trick and that it won't be too brutal. Feel free to join me.
We are enjoying a little break in the action right now. JR looks and feels good and even wants to try a little school tomorrow. He's out with the "boyz in the 'hood" playing and running around in the afternoons which helps more than anything else any of us can do for him. I've said it before but fresh air and exercise is huge here. I'm glad that this next phase is starting while the promise of great spring weather is teasing us all. Seeing him (and joining him) out there enjoying himself does great things for my soul, too.
I'll let you know how this routine plays out. I don't expect anything too huge that first day but I am a bit worried about the ongoing schedule. By worried I think I mean panicked. I'm sure he'll be fine but mama just hates to even think about these things, let alone watch him experience them. He just does it, though, all without much fuss. He's the greatest and I mean it! Until next time....