Things have been going fairly well here in the Hart household. Robert has been feeling more and more like himself, and has been able to stay in school. His counts were getting a bit low, so it was decided to forgo chemotherapy for a few weeks. The general idea is to keep his blood counts in a specific range, not too low or high, for the remaining three years. We returned to clinic today where they drew bloodwork to determine how to modify the therapy. He was given vincristine today, but aside from that will likely have a break from chemo for at least a few weeks.
He was able to celebrate his 7th birthday on the 14th, and we enjoyed a day of bowling. It feels good to be able to go out in public, and to allow him to be with other kids. He is having a few cumulative side effects from the vast amounts of chemo that he has received. A bit of motor skill trouble with his hands shaking a bit and the like. These are not uncommon obstacles, of which a plan is being developed to overcome.
Before clinic today, we participated in a program at the hospital involving the Hyundai Hope on Wheels Program. Hyundai has raised over 7 million dollars for childhood cancer and today granted CHOA 100,000 for a clinical study of a new drug that will aid in conquering the recurrence of Pediatric Leukemia. This being my greatest fear, the cause struck home. I gave a short speech, as well did the physician heading up the program, and a representative from Hyundai. A few of the kids painted their hands and pushed them onto a canvas emulating the programs logo. The boys were on the news, but as of the first run they only filmed their hands doing the painting. A shame, as they were excited to see themselves on tv, maybe the late news will show them more.
All in all, we're hanging in. Maintenance has so far provide us a bit of a reprieve. As long as the fevers stay away and we can get his chemo dialed in to raise his counts some, we'll stay in the passing lane.
09 September, 2011
Robert has been hanging in there. School makes him extremely tired, but he has stuck it out. He comes home and takes a nap almost every day. He has been having some problems with fairly severe leg and knee pain which were hoping is just from the increased activity. On Monday we will take him to the local pediatrician to get his blood counts checked, and we are scheduled to go back to clinic in 2 weeks. The home chemo hasn't been too disruptive so far, but the scattered 5 day bouts with the steroids are miserable as ever. So far long term maint has brought an overall improvement in our quality of life.