Well, that was fast...

Today, we planned on an MRI, a spinal tap to check the spinal fluid, and a bone marrow biopsy.  As usual, Ryan doesn't like to follow plans.  Apparently, he decided that we weren't giving him enough attention, so he wanted to add a little extra to his schedule.

As I've mentioned, we've been giving him steroids to kill off the T-Cells (the bad white blood cells).  The plan was to do this for a few days or weeks, until his WBC (white blood cell) number came back down to normal.  We started out on Friday at 65, and rose as high as 130 yesterday.  Today, we dropped down to 2, which is within the normal range.  This is a good thing, although it's putting stress on his kidneys.  So, he is now back to low WBC, so we are ready to start his chemotherapy.

This afternoon, we put him to sleep, and started his procedures.  He got his MRI, to be sure there was no brain issues.  We took a bone marrow biopsy, to check that as well.  And, when we gave him his spinal tap, we also injected him with a dose of chemotherapy in his spine (since we already had a puncture, we took advantage of that so we wouldn't have to stick him twice)  So, I guess this *&%$ just got real. 

He's doing fine, although the stress on his kidneys is causing him to dump potassium and phosphorous.  For the moment, they are giving him extra fluids to help this, but we are aware of the risk to his kidneys.  The doctors are prepared if he starts to have trouble in this respect.  (which gets into a discussion about how his kidneys could shut down and he could go on dialysis, but I don't want to think about it, so I'm just staying in my happy place)

Right now, we are waiting for pathology results to tell us how many (if any) T-cells are in the spinal fluid.  (We'd like it to be 0).  He is also a little low on blood (since we are destroying the T-Cells, that makes sense), so we've given him some Red Blood Cells and Platelets.  He's sore from the bone marrow biopsy and the spinal tap, but they are giving him some happy juice to keep the pain at bay. 

Patrick and I talked to the oncologist tonight to discuss plans for the future.  Of course, most of them depend on how things go in the next few weeks.  More chemotherapy, more tests, different meds that will affect him differently. 

Right now, my head is just spinning.  I'm tired.  And a little terrified.  With the transplant, and even the original diagnosis of Hirschprungs, I had plenty of time to prepare.   We were put on the transplant list in April of 2005, and he got his transplant in November 2005, almost 7 months later.  I had months and months to wrap my head around what was going to happen and how to deal with it.  It's only been 4 days.  I'm so not ready for this. 

So, I'm going to just trust and have faith.  I know that he is in a good hospital, and I know that Patrick will ensure the doctors take good care of him.  I'm going to try to sleep tonight, and pray that tomorrow I'll have a better understanding of how things will progress. 

Thank you all for your prayers, and maybe throw an extra prayer in for me.