Last blog post I mentioned Harrison's blood counts have dropped. In lamens terms you and I have a count of about 4.0 lymphocytes or better ( or 4000 cells) Harrison has now 0.4 ( 400 cells) which is a crap amount and half of which he had a month ago.
I have since this result been not sleeping well, stressed about these counts, worried about the chest x-ray he had done at the immunology review, and now we are back for testing. So I have arranged to borrow Mark and Donna's car ( our neighbours, friends and Harrison's godparents) which is lovely but it really shits me that I even had to borrow a car - actually Mark offered which is even lovelier, but I still hate that I have no choice but to borrow a car. I wish I had a car that I could just get in and go, and that it didn't cost me a damn fortune in cab charges to do it.
So enough of that - yes I am frustrated - we go to Westmead Kids tomorrow. I think I am seeing the BMT doctor Peter Shaw, and Harrison is having all the major blood testing done. This test will take yet another week to come back with results, but on the plus we will have answers to all of Harrison's progress or lack of, depending...
They will test the total number of white blood cells & how many of these are of "donor origin" e.g. Ella's cells, the breakdown of these - called subsets, which are known as T cells, B cells, NK cells and there is a bunch of other ones they test for too. The B cells were only at about 22% of the cells being Ella's at last check in January - so I am hoping for a miracle of sorts and see these cells dramatically increased. Same for the T cells - we were about 60% Ella's cells in Jan, so I am hoping to see them at about 80%. What scares me in all of this is the wait, the unknown and the what ifs.
He may still need the second bone marrow transplant and what the hell will that do to the kids ? They went through enough the last time and this time would be no better - in fact worse as if we do go a second round, Harrison has to have chemo, and drugs post transplant to stop the BMT rejecting and making him sick.
I don't think I would cope as well with a second trip for a lengthy stay, but at least this time around I know that I have the same support I had last time and that Scott will be more active in staying at hospital with Harrison. What really frustrates me though is that we are just now - 9 months after the last transplant - starting to get on top of things. Most of the medical bills have been finalised now, we've managed to get thru the first round of fundraising, and Harrison has come along developmentally in leaps and bounds.
He is climbing up stairs - although this is a worry as his only way of coming down them thus far is ROLLING.. Not good for the central line! What delay will another trip set him back though, and how long does this then take to correct this round? Ahh will it ever end? When will there be a light at the end of the tunnel for our family and what else will Harrison have to endure before things get better for him.
What sort of delay would another hospitalisation give him, and how damaging emotionally to the other 3 kids would this process be? It's bad enough that every time I walk out the door with Harrison to say I am going to hospital with him or for blood tests, the kids ask am I coming home, and they get this very frightened and sad look on their faces. I hate with every ounce of my being that they are suffering through this, but there is also nothing that I can do to change it. I feel that this whole thing has been so unfair on them that I am compelled to make it up to them at every opportunity I get. But, financial strain & the ridiculously rising mortgage costs simply prevent this too.
While Harrison is actually going through the illness , it is also the other 3 kids who suffer, not just with him but in their own right as well. And truly that is what worries me the most. So I am signing off this blog with a sigh, not knowing what tomorrow will bring and desperately trying to avoid the gut feeling that things are not all well. I hope I am wrong.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment