Scott's counts were fine and his anc was over 750 so we could go ahead with his intrathecal methotrexate which is done whilst he is asleep under anaesthetic. The procedure went well, a small amount of spinal fluid was extracted, which will be tested for leukemia cells, and then chemo was injected into the spine. However, and this has happened before, when he came around he was extremely emotional, depressed and weepy. This was probably due to the anaesthetic and within a couple of hours he started to cheer up, thankfully. Even though the procedure went smoothly, sometimes it doesnt and requires a bit of 'wiggling about' to get the right spot, he still says his back is very painful. Hopefully it will settle down in a day or two.
We then went for chemo and again his bilibuben was elevated, more than twice the upper normal level. The protocol is quite clear, only half the dose of vincristine should be given when the biliruben is high. Other meds, methotrexate, 6mp and prednisone, remain the same. I am obviously very concerned, not only because his liver is struggling to process all that is going on, but these medications, the amount and their frequency, are tried and tested and I dont want to give the leukemia the slightest chance of returning. T-cell ALL is a very aggressive leukemia and requires constant high amounts of chemo, anything less than that gives the cancer the chance to re-group and attack.
When the nurse came to administer the vincristine I think I grumbled "its hardly worth it really" but she told me that even at 1 and a half milligrams its still a reasonable dose. His normal dose would be 3 milligrams every 3 weeks, pre-b and b cell leukemia is 2 milligrams every 4 weeks. Damn those t-cells!
So anyway, not much we can do about it, just worry.
Today Scott is laying on his lovely new bed watching Roseanne. His back hurts, his legs and feet hurt (from walking around at the fishing yesterday), his jaw hurts (from the itty-bitty half-dose, grrr) and he is mad and hungry (from the steroids). He is also craving pizza again. Today nothing less than Papa Johns will suffice, anything other than that may end up in a complete meltdown and a possible homicidal rampage. So Papa Johns it is.
Thanks again to the Steve Yerrid Foundation, we all had a wonderful time. It was staggering how much money, time and love went into making the Fishing Derby perfect for the children. The kids even got to keep their rods and they were given tackle boxes with weights and lures too. Both Derry and Scott used to fish for pike in the Scottish lochs and yesterday has certainly rekindled those cold, damp, mosquito ridden days which for some strange reason they loved so much. Boys will be boys I suppose!
I'll leave you with a few more photos. The man in the white sweat shirt hugging Scott is Steve Yerrid, such a beautiful person to be sure. I believe the man in the grey top worked for the fish and wildlife commission, he was very sweet to Scott. The final photo shows the end of the day when each child was invited on to the stage and given medals, there were no winners or losers, every kid got a real nice medal with 'winner' engraved on it. It's a good job Im so ice cold or I'd have been bawling my eyes out. :)