Anxiously waiting

Harrison had blood testing done at Children's hospital on Wednesday - we now have to wait a week for these results, with the hope that all is fine and the reason his blood counts have dropped is because of an infection of some kind in his system.

I worry that he had the central line infection and his counts didn't drop so why now? I don't know - something in my gut just tells me things are not as great as the doctors predicted we'd be by now. And again a HUGE thank you to Mark & Donna for loaning me their car. What would we do without them and their second car.. Man they must get sick of the sight of me, and my phone number on their phones. I cannot express how much it is appreciated - and even though I get depressed at having to ask to borrow any car, I know there is a wonderful crew of support out there willing and offering help, and for that I am very thankful.

So, if the results come back next week ( we have to wait a week as they test for all the different types of white blood cells and the ADA enzyme as well - at least we don't have to wait for the toxic metabolites test from the USA - they didn't do that one!! ) and his BMT (bone marrow transplant) isn't working enough, then we have to make the decision as to whether to re-transplant him now. Or do we make the decision to wait til July, do the blood testing again and then make a decision if things are still not improving. 3 months more of uncertainty with no guarantees that things will improve - it does my head in just thinking about it.

I am running on no sleep and raging from desperation to being really over - anxious to crying-at-the-drop-of-a-hat, for no particular reason. Every time I wake up I think about these results and how much hinge on them.

My biggest fear is that after 6 months we had only hit 60% for his transplant ( that is 60% of his T cells are Ella's) . Normally other patients would have achieved 100% cells by 6 months. But Harrison didn't have the chemotherapy ( called conditioning) before the first transplant and so it was expected that this getting to 100% would take just a little longer than normal.

But now 9 months in things do not look so hopeful. Harrison's counts only went up 7 % over two months (between the stage of 4 to 6 months post transplant) which is pretty slow going, and if the same trend happens again from January to April, then we would be looking at somewhere around only 70% T-cells being Ella's. This is really not acceptable, and if the cell counts are anything under 80%, then we will have to seriously re-consider doing another transplant. In fact in my head I keep thinking it would be better to get it over with, than waiting for 3 more months until July, and then having to go again anyway - in a sense we wouldn't have the stress and uncertainty to have to go through.

But, the decision is still pending until these results are back in; and until then I will have a dreadful knot in my stomach. I could honestly just sit and cry for a week as I feel so helpless, hopeless - not sure which . And I really cannot do that as I have 4 little people counting on me to get up with a smile on my face to play with them, cook and keep going in general.

What really breaks my heart though, is that the kids will also have to go through this again too. I cannot begin to think how hard a second long stay in hospital will be for them and I will never really know just how damaging this will be to them.

As a parent to feel this hopeless and helpless - well there are no real words to describe my feelings and fear that I have. I hate the thought of putting Harrison through this, he will have to endure Chemotherapy and post transplant drugs if we do go a second transplant. With the first time he was so young and had so little immune system he didn't have the chemo (conditioning), nor did he need the anti rejection drugs, so we thought we were lucky.

The chemo will make him sick, and will undoubtedly sterilise him. It's funny that I never really gave a thought to him not having kids as an adult. I just expected that he would, with a little genetic counselling. Suddenly the very real nature of this condition emerges, and the reality of all our kids having their own kids when they get older will be just that much harder for them, and I feel extremely guilty suddenly.

And again I am teary, so I am going to leave it at that. I promise to update the blog when things are know re the results, hopefully explain them so that you all understand and let you know what our next step is. I cannot believe we are back to worrying about having a second transplant again. I really thought we were past this.

I hope my news next week is much more positive.