The plan is continuing and Scooby is staying on it. He is doing much better than he has been all year, holding his head up, awake for most of the day, and understanding where he is and what’s going on. The doctors and nurses are all really pleased, and obviously so are we! It feels like we have him back, from his niggles and nagging to his quirks and jokes. The initial course of treatment for HLH seems to have worked and in theory we could leave him now and he would probably keep getting better for a while, but there is a high chance the HLH would come back, and in a more aggressive form than before. As the suspicion all along is that his illness seems to have been some kind of immune system dysfunction, we are in agreement with the doctors that the highest chance we have of getting him over this is the bone marrow transplant, because it will wipe out his immune system, which hopefully includes the source of the malfunction with it, and replace it with a new non-malfunctioning one. The two main concerns are firstly all the possible things that can go wrong with BM transplants – rejection, infection, etc – and secondly, that if his immune system wasn’t the actual source of the body malfunction, then whatever has caused it would also cause the new immune system to go faulty eventually too. But after watching what this disease and then the HLH on top of it has done to him so far, we are willing to proceed with the course that has the highest chance of making it go away.
Scooby is not the only one following the plan. Rocky has had his final tests, to further confirm his suitability to match Scooby, and also to check his health independently to make sure there are no risks to him too. This included a psychologist’s assessment to make sure he had a basic understanding of the situation and wasn’t being terrorised into donating. I was a little uncertain how he would go when he flunked the first two questions (‘Hello, is your name Rocky?’ ‘No, I’m not Rocky, my name is Rango.’ ‘Oh. And how old are you?’ ‘Today I am five.’ ‘Are you sure? It says on my notes that you’re four....’) but thankfully she must have seen her fair share of imaginative children and decided that he was just cute and quirky and not psychologically disturbed. She even called him Rango for the rest of the meeting, much to his pleasure.
Later on Richard rang me to say that the consultant was really pleased with the results. As much as two people’s results can be similar, Scooby and Rocky are. They are the perfect match for each other and every box is ticked. :)
And so a date has been set of March 9th. For Rocky, this will just involve him going in the night before - which he is ridiculously excited about because to the rest of the kids having mum or dad to themselves all the time, plus a bed you get to eat your meals in and watch TV in and press buttons on to make it go up and down, is just the best experience ever – and then the next morning he will go under general anaesthetic while they use biopsy-type needles in several points of his pelvis to suck out some bone marrow. This is less painful than it sounds because children have softer bones than we do, and although it will ache a bit for the next few days, he’ll be able to go home on the same day with a bit of pain relief. His bone marrow will then go into Scooby’s body as a transfusion through his central line, just like having a blood infusion.
For Scooby, he will have nine days of intensive chemo leading up to the transplant day, which will destroy the bone marrow in his body. Then once the new BM is given to him, his body begins the long slow process of accepting the new material, and making it work like it’s supposed to. It will be an unpleasant experience, not just because of the heavy chemo beforehand, but also because part of the process is that he will have to re-fight all the viruses that are lying dormant in his system. Apparently most of the illnesses we have are the process of us attacking bacteria in our bodies, and once we have fought and won, traces of that bacteria just sit immobilised in our system (usually in our gut) because our immune system now has the anti-bodies in it that stop it from growing again. So because Scooby is twice Rocky’s age, and has been exposed to more things than Rocky has (including some tough hospital bugs), when Rocky’s immature immune system starts working in Scooby’s body, it will have to learn to fight all the germs that Scooby’s system had already worked out. We're starting to understand why it takes six months for recovery now!
So if you can do your maths and count backwards, step two of the treatment – step one being the initial attack on the HLH – will proceed on February 29th. When Richard told me the date, I laughed out loud because I remembered several weeks ago when my friend Jacqui told me she was going to set up a Facebook group for forty days of praying and fasting for Scooby. She told me what the starting date was and although it was only eight or nine days into the future, Scooby was so ill and deteriorating so fast that inside I thought desperately ‘Why are we waiting for so many days? Can we not start tomorrow?’ Without me voicing this, she told me she had specifically felt that the end date was significant and that was what we were working towards; and when she set up a group that people can join as a follow-up after that date, I remember sensing that it would be a turning point – the start of the next chapter.
I’m sure you can guess – or for those of you who have given up chocolate, tea or some other painfully cherished substance since 21st January, you will already have the date etched into your brain – but it is indeed the 29th of February.
:D :D :D