1st Clinic Appointment - Day 8

Charlie had his first clinic appointment this morning which included a spinal tap, bone marrow withdrawal and two chemo injections, one in his spine and the other through his port. For those who aren't aware, while Charlie was in the hospital they installed a mediport in his chest that sits just under the skin. This is an access point for his IVs, medication and blood withdrawals and means they don't have to reinsert an IV in his arm every time we go in for treatments (which occur on a weekly basis for now). Charlie did spectacular this morning. He was less than happy to go back to the hospital and he screamed while they accessed his port, but he did sit pretty still. Shortly after that, he was put under while they did his punctures. He woke up in really good spirits thirty minutes later with a smile on his face and well groomed finger and toe nails (Mom is really opportunistic). Charlie was then given his second chemo treatment which he took all by himself, no constraining and no crying, and the nurse removed his port access, again no fuss . . . Yea!

We also received the results from his blood work and all of Charlie's number look great. When we first got to the hospital last Wednesday, his blast count (which is essentially the percentage of white blood cells that are cancerous) was 32%. By the time we were admitted to Oncology, seven hours later, his count was up to 40%. While we were in the hospital after his first chemos, we saw the numbers drop to 20%, then 10% and his last draw before we were discharged showed 5%. Today his blast count was down to 1%. Meanwhile, his ANC was mid 1300s. The ANC is a measure of how well his body can fight infections, anything below 1500 means we need to limit his exposure, less than 500 means a transfusion is needed. 1300 is great considering his blood has been constantly attacked for the last week by the chemo.

Dr. Albano also confirmed with us this morning that Charlie is Average Risk ALL. Low risk would have been better, but we are lucky not to be in the high risk category. About 75% of ALL cases fall in the average risk category. This means that we are still able to take part in the leukemia study. Last week, we signed Charlie up to donate extra bone marrow and blood to a special clinic that is researching better treatment paths for leukemia patients. In return, Charlie is put into a random lottery where he will follow one of two paths, Normal Consolidation or Intensified Consolidation. If one path is showing better results than the other, all kids are moved to the better treatment path. No placebos are given in studies involving kids so the only risk to Charlie is the possibility of more intense side effects. If he was a high risk patient, he would have a set treatment path and would not be available for the study.

At home Charlie is still doing pretty good. He is more grumpy than normal and more tired, but on the plus side that gives us more time to relax. He is still not walking, but we are seeing signs of improvement. He is putting more weight on his legs than he used to and is more stable when he stands up. We are crossing our fingers that he will be walking around the house soon. He is also showing signs of improvement in taking his medications. He used to be a good medicine taker, but the hospital stay last week ruined that. So we are slowly making our way back to normal in that respect.

I am hitting high points and this email is already a mile long, there is just way too much information to convey. We will be keeping periodic updates through emails and also the blog (http://charliehooper.blogspot.com/). We will be putting pictures there so we don't clog up any emails. If you have any other questions or information, feel free to email us. It is not a nuisance to shoot back a quick response.

Again, thanks to everybody for your support and for being patient with the dissemination of information, things are just starting to slow down a bit for us.