Scott had his second to last vincristine today; he also had methotrexate and starts back on the steroids (which were increased to 180mg a day) and 6mp nightly for two weeks. I had hoped for an anc increase since last weeks was low and boy did I get it. His anc was almost 4000. This is far higher than the doctors would like it to be but since his counts are fluctuating wildly an increase in chemo wasn’t considered. Scott’s anc is no longer following even a vague pattern as it did until fairly recently, Im not too sure if this is normal or not at this stage in the game, maybe he has developed some sort of tolerance to the methotrexate, I don’t know.
So we now face another bitch of a week but at least the light at the end of the tunnel is getting brighter. We do have a new addition to our pain fighting arsenal – Demerol – described to me as being Tylenol w/ codeine’s big brother. Hopefully it’ll kick ass and make life a little more bearable for Scott in the coming days.
As you probably know by now the steroids make Scott hungry. Well 2 weeks ago after finishing his steroid pulse he was weighed, and again today. I know he wont want me to tell you how much he weighs as he’s a little paranoid about being so chubby, but he weighed eleven pounds less today than he did two weeks ago. Eleven pounds in two weeks!!!! It’s going to be incredible to see that weight drop off in the months to come. He should also start to grow. In the last 25 and half months he has grown 1 centimeter, he currently measures in at 4 foot 11 inches and his brother (older by 2 years) is almost 6 foot 2 inches.
I have attached two links re t-cell and early t-pre cell leukemia. ETP is a newly recognized sub-group and holds a dire prognosis. Scott obviously was not a part of this study so we have no sure way of knowing whether he is actually T or ETP. I knew from Scott’s wbc at diagnosis (89,000 – high but reasonable for t-cell) and early remission that these are good indicators for successful treatment but this is not scientific proof in any way that he is T rather than ETP. Anyway, I raised this at clinic today with the doctor and was pleased to discover that he was up-to-speed on this study. He agreed that Scott was more than likely t-cell. This was good to hear yet still a 10-14% (depending on whether you go by St Jude statistics or the Italian study) relapse rate is cause for concern. When you think that we have been hit by something only 250 – 300 children in the US are diagnosed with each year you soon learn to never have the “well it wont happen to us” mindset again. A relapse is much worse than initial diagnosis, especially whilst on treatment or in the year following. Transplant would be recommended and in T-cell this is rarely successful.
Well that’s it for now. I gotta go give Scott his lovely strawberry flavored chemo and get some shut-eye. Goodnight, sleep tight.