Didn't have time to write when I was back on Friday. Got in late, just me and Sammy. Beans on toast and straight to bed for him. Gentle guitar night with friends for me (turned out a little less gentle and very late, but refreshed me all the same: thanks guys).
We've had Pampa (my father) over from Switzerland. Yes, I mentioned him before but failed to explain who he is. He did another night with Joe on Thursday but flew back to Switzerland this morning.
Friday was a big day for us. Joe had his Day 15 bone marrow sample and also another lumbar puncture. The reults Sue has already sent out. He has responded very well to treatment and he will continue to follow Regimen A, which is the lowest level of chemo (it is still chemo, and pretty heavy, but it involves the lowest risks of damage and the fewest side-effects). Other important outcomes of the day: his leukemia has none of the genetic markers that indicate complications or rare types, so the prognosis remains good. He has, it seems, got the simplest, most treatable form of the disease. However, what he has is cancer and the treatment involves toxic drugs, weekly hospital visits, a tube into his (I think) aorta for a year and further chemo over two years after that. Given the severity of the chemo regimens he might have been on with other forms of the disease, this is still a huge blessing.
Thursday, it turns out, was actually a more informative day. (On Friday nothing really changed: he remains on Regimen A and there are no complications). On Thursday we learned all about his blood counts and what they mean. His daily and now every-other-daily (yes there must be a better word for that) blood samples have been providing info about how many of different cells he has in his body. They count red blood cells, white blood cells, platelets and neutrophils (a type of white blood cell): the chemotherapy stops all of these being produced, as well as the leukemia cells. If he gets low on platelets or red blood cells he gets a transfusion, but if he gets low on neutrophils there's not much that can be done, except watch him closely, monitor his temperature for any sign of fever and keep a lot of antibiotics handy. At the moment, as Sue said, his neutrophils are down to 0.1. We had a leaflet which tells us what his counts should be, and what happens when they go below certain levels, but I haven't got it here. But 0.1 is way way below what it should be and makes him very vulnerable to infection, which takes hold extremely quickly. He also has to steer well clear of viral infections, especially measles and chicken pox. However, when he's at home he will be able to carry on pretty normally, even with low levels of blood cells. We'll just have to watch for signs of infection and act quickly. Scary, but positive.
The doctor said that he may be allowed to leave a few days earlier than the 28th day of treatment if his neutrophils recover quickly enough, since his response to treatment has been so good.
His hair may not fall out for 3 months, we're now told, since he is on Regimen A for the chemo. But we really don't know. We are still planning a mass head-shaving as soon as his hair starts to come out. Let us know if you want to be part of it. Also if you can get yourself sponsored, or even us sponsored for how many heads we can get shaved, let us know. We want to raise money for the Sick Children's Trust in particular, as they are providing the roof over our heads and the space to keep Sammy and Joe with their family all the time.
If you want to know more about acute lymphoblastic leukaemia, and blood cells and stuff try here:
It's part of the Cancer Research UK site.
This hasn't been a very chatty newsletter, but it contains most of what we have been finding out and talking about.
Oh and pies, fried breakfasts, instant noodles, smoked bavarian cheese, milk, gravy & mash, Burger King, bacon & egg sandwiches. We've talked quite a bit about those too, of course. He's starting to feel "dense" when I pick him up now. By dense I mean heavy!
Thanks again for all your messages
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