Pins and needles

Another busy (and frustrating) week that will end on a note that's either very high or very low.

Background: our original transplant schedule was delayed for a couple of weeks, and we've since been in a holding pattern. The time has gone quickly, and we've continued to love having Sam at home. We started taking him out for walks in a Baby Bjorn-like carrier thing, and it's great...

But on Monday Alyson noticed that Sam's anterior fontanelle was bulging out a bit. This, we'd been told, would be bad. I assumed it meant infection, but since Sam didn't have a fever, attention shifted to the other option: HLH activity in the brain. Although the HLH is very much under control elsewhere in Sam's body, the brain is something of a "sanctuary"--the HLH can hide out there and be difficult to detect and treat.

Sam has been getting periodic (roughly twice-a-month) spinal taps and chemo treatments, and the assumption had been that his central nervous system was in good shape. The fontanelle has since Tuesday looked and felt normal, but the doctors wanted to take no chances. They scheduled another spinal tap and dose of chemo (methotrexate) for today; results are expected tomorrow.

If we get good news tomorrow--no HLH activity detected in the spinal fluid--we will be cleared for transplant and admitted on Sept. 1 to the hospital's Blood and Marrow Transplantation unit for the beginning of the long transplant process (more on that soon). We're both dreading the transplant process, but it's the only way out of this mess--the sooner we get started, the sooner we can be done.

If, on the other hand, they find any evidence of HLH activity, they will delay transplant for several (2-4?) weeks in order to stamp out--or try again to stamp out--the HLH*. And we will be deeply disappointed. And scared that another shoe will drop before we ever have a chance to go to transplant and knock this @#$ thing out.

* Active HLH during transplant is a bad thing. It reduces odds of a successful transplant, and increases the odds that the HLH will come back. And if the HLH comes back, the prognosis for Sam is decidedly less rosy.

Anyhow, here's more recent pix. The last one almost made Alyson pee.

 

Guess which one of us had his nails clipped moments later?