Work up week

On Monday work-up week began and continued Tuesday, Wednesday, and today. She had an echocardiogram done to check her heart levels, a spinal tap to check for residual traces of leukemia, an x-ray and CT scan to check her lungs, and a couple dozen test tubes of blood drawn for various other tests. The Muga scan was an interesting test where they drew blood, laced it with radioactive material and injected it back into her bloodstream, allowing them to watch how efficiently her hearts left ventricle pumps blood through. We’ve had consultations on the radiation therapy she’ll receive as well as the chemotherapy and a few other meetings and consults. In all we’ve spent somewhere in the ballpark of 20 hours at the clinic this week, in preparation for next week.

Monday we will be having a final consult with Dr. Burns, where she’ll go over all of results from this week and give the final go-ahead to proceed with the BMT. Amanda will technically be ready on Monday, if indeed they’ve located a viable match for her, which we’re still waiting to hear, but there may not be a room ready for her yet. As soon as there is though she’ll be admitted, and her mailing address will be temporarily changed to the U of M Hospital once again. Her stay could be as short as six weeks, but is likely to be a bit longer than that.

The process begins with a Hickman catheter surgically implanted in her chest. This is where all of her drugs will go in and blood draws will come out of. It can stay in indefinitely, but is likely to stay for a few months. From there she’ll receive Fludarabine for three days and Cytoxan for two. Dangerous stuff, but if ever there was a need for a necessary evil, it is now. This is followed by a day of rest while the chemo drugs and her useless immune system are flushed from her body. After that the radiation begins. Twice a day for four days, twenty to thirty minute sessions will irradiate almost her entire body, wiping out the last remnants of her bone marrow and immune system. Then somewhere around day nine she’ll receive the cord blood transplant. One IV drip bag is all it takes. This takes a couple/ few weeks to find its home and begin repopulating her marrow. They give her colony stimulating factors to encourage faster white cell growth during this part of the process.

Then we wait while she recovers. Bone marrow biopsy’s and several other tests along the way will tell us some, but the first major milestone is day 100. If there is no leukemia in her marrow at that point we can breathe a giant sigh of relief. There are several major milestones that follow, but they won’t consider her cured until she’s reached the five year marker.

Right now we’re just going to try to enjoy our weekend and last time together at home for a while, all the while bracing for the next ominous week ahead.