18 December, 2012
It's hard to believe, but we've just passed another diagnosis anniversary. This December 16th marked the completion of Robert's second year of treatment, and today's treatment kicked off his third.
If you were to tally up only regularly scheduled doses, omitting all extras given when sick or in the hospital, in the last 24 months Robert has had...
24 spinal taps
720+ days with a new chemotherapy dose administered.
1500+ mg of steroids
These are called beads of courage. It is a program where each bead represents an ordeal or event. There are specific colored beads for surgery, needle pokes, blood transfusions, IV chemo, pulmonary treatments, hospital admissions, holidays spent in the hospital etc...etc... Each of these events only earns you one beach each time. This will give you an idea of how much of this stuff he's gone through so far. And we surely have left the hospital on more than one occasion forgetting to pick up his beads for a particular visit (mostly when Dad's there)
The tentative end of his chemotherapy protocol is April 2014, a little further out than I thought it was. However Lord willing, only one more December 16th to count.
Clinic went well, and Robert is resting after the long day. His ANC is extremely low, probably due to a virus. Luckily he is out of school this week, so maybe we can get through the ditch without a hospital stay. His Monocytes are high, which are a good sign that his bone marrow is working hard at making healthy cells. We have a bit of concern over some headaches that he has been having. They are more severe than his normal headache, more migraine like. Its possible that its just some sort of migraine. The most likely cause and lesser of the evils is steroids. Prolonged use of high dosage steroids can cause pressure on the brain. If it persists they will conduct another form of spinal test during his next spinal tap. The least likely and most terrifying cause could be Leukemia in the brain, but that's just not going to happen.
All the kids are excited about Christmas, and Robert adjusts the advent calendar every morning. We are truly blessed with how things have progressed. Furthermore, we are eternally grateful for those who have and continue to help in countless ways.