2 Cor 12v9

Friday, 24 February 2012

A Perfect Match

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  

Friday, 17 February 2012

Less HLH; More Hope

The good news is this: it looks like Scooby is on target for a bone marrow transplant in the next few weeks. His blood levels are doing what they are supposed to be doing; the chemo seems to have destroyed any evidence of HLH in his system; his temperature has been normal and any infections are being quickly recognised and dealt with; he is less sleepy and a little more ‘with it’ than he has been for the last few weeks; and so far the tests for Rocky have been clear to show that he qualifies as a suitable donor. The doctors had to keep the steroids raised higher than they wanted to in order to get the levels right, and his various drips and infusions are being constantly tweaked to make sure he’s getting what he needs. His appetite has been almost normal this week and his weight is now not much under what it was when he first went in, which is pretty surprising.

And one really REALLY weird thing has happened – his double vision has gone. Since mid-January 2010 he’s seen two of everything, and the angle has shifted when the disease in his brain has got worse, but he’s never had a day without it, until last week. It’s actually quite freaky to see him looking at us face on because we’d grown so used to one eye pointing off in another direction. We have no idea why this has happened – it’s possible that the steroids have caused some inflammation to go down, or caused something else to move over (his face on the outside seems to be getting bigger every day and around his eyes it's very puffy, so there could be something similar going on in the inside) so it could just be a temporary thing, but as Richard said, in the beginning it was the only thing that seemed to be wrong (and we wouldn’t have taken him to hospital if it wasn’t for that), and now it’s the one thing that seems to have gone right! 

So, while we are pleased that the doctors are happy that his body is finally following The Plan, we are also slightly dazed by realising all that a bone marrow transplant entails. The transplant itself is a ridiculously easy procedure (once you have a donor, which has been a breeze for us thanks to our over-zealous baby making, but often involves a worldwide quest for other recipients), because it is simply sucking some cells from the donor, putting them into a bag, and then dripping them through his central line for a couple of hours, like the half dozen blood transfusions he’s had already. The complexity of what his body has to go through, however is pretty mind-blowing, life-changing and scary stuff. Before the transplant, he will have chemo that destroys all his own bone marrow within a few days. So there will be no immune system and no ability to create any kind of blood cells at all. When Rocky’s stem cells are put into his body, they have to find the right places to go, settle into those places, and then start to do the jobs they are supposed to do, while multiplying themselves enough times until his body has enough bone marrow to be able to reproduce blood cells and immunity for his whole system. This will take about six months in all, and so in that time he will be restricted in what he can eat and where he can go, and will still need pretty heavy medications, including more blood transfusions and anti-rejection drugs. His central line will stay in for a long time so they can give him those, and coming home depends on a massive range of factors. In fact, when patients come home, the hospital keeps their bed assigned to them for a while afterwards, because chances of complications are high and an infection or an alteration in blood levels can mean they are back in for days or weeks until it is sorted.

The minimum stay after a BMT is six weeks, and we’re pretty sure that as Scooby has NEVER been a straightforward case and has needed so many factors to keep him stable this year (even on this ward, the nurses are surprised at how many medications he is on!) that he will be in for longer than that. So as well as the implications of how tricky it’s going to be to get his new immunity and blood-making systems to work effectively without succumbing to any dangers on the way, we’re also dealing with the logistics of knowing that we will be physically divided as a family for a long time still yet. When a transplant was a hazy mirage in the distance I was girding myself to be ready until perhaps the end of March (I don’t know why – that’s about as far into the future as I could think at that point). Now that we can see what it looks like, we are peering into April and May, which includes my cousin’s wedding, the birth of our new nephew, and my sister and brother-in-law leaving to travel and do missions for a year, and knowing that even if he’s out before the summer, we will still be under the no-germs, restricted food, restricted visitors, etc, etc, regime until the autumn.

So we have been slowly processing this over the last week and coming to terms with the idea. The idea of most of this year being absorbed with Scooby’s treatment. And of course, the idea that by the end of the year, we may possibly have said goodbye to this horrible disease that has been doing its best to slowly steal him. I can hardly dare to imagine it, but IF the treatment has got rid of his mystery two-year illness as well as the HLH and IF the post-transplant obstacles are overcome, then we get to keep him. What permanent damage has already been caused by the disease and the intensive medication, we don’t yet know, but four weeks ago I didn’t think he was ever going to come home again, so at this stage I don’t even care about that. We have hope – not just a tiny glimpse of it, but a big dollop of it that comes with a name and a shiny booklet and a six month plan. Hooray for hope.

Tuesday, 7 February 2012

Bone Marrow Donation

So the results are in... and we have TWO sibling matches - Rocky and Baby! So not only are we beyond thankful to have a perfect donor, we now also have a response the next time someone says to us; “FIVE children? Are you mad?!?” Can you imagine if we’d stopped after three?

Scooby is still not at the point where he’s ready for transplant, but they have moved him into the Bone Marrow unit already, to make sure he’s in the right place for when the time comes, and also because he needs the stricter infection-controlled environment to protect his fragile system.

We haven’t explained the situation to Rocky yet (the doctors’ choice of donor) because we have no idea about timing and to be told at four years old that you may or may not be having an operation to save your brother’s life is a pretty large piece of information to swallow!

Now that we know that part for us is secure and ready, I really want to ask if you were one of the people who were willing to come forward as a donor for Scooby, if you would think about signing yourself up on the register to donate to someone else. We are incredibly blessed to have so many family and friends willing to step forward for us, and there are many other people whose need is as great as Scooby’s, that don’t have matching siblings or as many generous friends and family.

For me, the biggest question is ‘What would I be signing up to do?’ so I found this video on the Anthony Nolon website about the process that a successful donor would go through:

I have to be honest, my first thought was ‘Hmm, not sure I’d want to be feeling a bit under the weather for a few days, that might not be convenient,’ before remembering that I’m expecting my four year old to do the same thing!! So although I know that right now I wouldn’t be available physically to go and donate, I have set a reminder in my phone for six months’ time, and to go off every month after that, until I’m in a situation where I know I could be spared from family commitments if I was needed as a donor, and then I will register. And anyone who knows me knows that I am the MOST squeamish person EVER when it comes to blood, veins and needles, so to decide to do this is no little thing at all. It’s only through watching Scooby have stuff taken from him and put into him on a daily basis without complaining that I could muster up the guts to do it.

So watch the video, go to the website www.anthonynolan.org and if you can’t register straightaway, set a reminder on your calendar and do it soon.

How great would it be if FORTY people who were willing to donate to Scooby signed up to help other people instead? In fact, if you do it, add a comment at the bottom here and then we can count up how many people have registered as a result of Scooby’s story (this is for my sake – it helps me to make sense of all this!).


Thursday, 2 February 2012


Here’s one of many weirdly surreal conversations that we never imagined having. This is what took place two weeks ago the day before the kids went to be tested to see if they will be bone marrow matches for Scooby.

Me: So, I have something important to tell you. When we go to see Scooby tomorrow, the doctors want you guys to all have a blood test.

Ace: Like when they take blood out of Scooby’s arm? (We’d let him watch once after he begged us many times, and then regretted it when he nearly passed out at the sight of the blood in the vial.)

Me: Yes.

Ace: No no no no no no no......

Rocky: What? Make me bleed from my arm? (watching Ace’s reaction) No no no no....

Me: Wait! Just listen a minute. It’s to help Scooby. His blood is not working properly and they need to....(pause while I realise that mentioning the possibility of one of them having an operation will only increase the rising panic, so I decide to fudge the issue for now)...to give some of your blood to Scooby. Because you are his brothers and sister, your blood is nearly the same as his.

Turtle: (in mock horror) Whaaaat!? They want to take blood from one person and put it into someone else? Have those doctors gone crazy?!?

Me: No no no! It’s a very normal thing, they do it all the time. If someone hasn’t got enough good blood, they put more in and it makes them better. So you might be helping Scooby to get better.

Turtle: Aha, I see! So we would be sacrificing ourselves for the sake of our brother.

Me: Well, I wouldn’t quite put it that way...

Turtle: Come on men! Let us be strong! We will give up our lives in order to save our brother!

Me: Well, it’s not actually your life, it’s just a bit of blood...

Turtle: Hang on a minute - I have nosebleeds all the time! When I get there I’ll just punch myself in the nose and then the doctors can have loads of my blood!

Me: No, that’s okay! They only need a little bit and it has to be from your arm.

Ace: But I don’t want them to take my blood!

Rocky: Me too!

Turtle: (really hamming it up) But don’t you want to save your sick brother’s life?!

Me: Woah there, Mr Guilt Trip. That’s enough. Time to use plan B. You know boys, it would be a very very nice thing to do for Scooby. And sometimes when you do nice things for people, you might get a reward.

(All eyes sweep up to the bribery reward charts)

Ace: You mean I might get more points?

Me: Maybe. If you were very good at having it done.

Ace: Wait! If I give Scooby my blood, can I get enough points for a new Skylander?

Me: I'm not sure about that. But for being extra brave you could get an extra treat.

Ace: You mean two Skylanders?

Me: No, I don’t mean...

Turtle: Oh I want one too!

Me: I thought you were doing it out of devotion to your brother?

Rocky: I want a new Bakugan!

Me: You’ll have to wait and see....

Ace: If I let them take more blood, I could get more Skylanders! Three or four or five...

Me: No, they just want one bit for now.

Ace: Wait! Scooby gets lots of presents because he’s poorly. So if I was poorly people would bring me Skylanders all the time! (gleefully) Mummy, how do I make myself get poorly?

Me: I don’t think....

Turtle: (helpfully) You could eat slugs!

Me: NO! Nobody is making themselves ill to try and get presents, and I need to talk to Daddy about what rewards there MIGHT be. I was thinking more like chocolate actually.

Baby: Choctot!! Me me!!

And that is how we persuaded the children that having a blood test was a good idea. And they were as good as gold. Chocolate was given at the scene and two Skylanders and a Bakugan followed shortly after. Ace has asked me several times since if he can do it again (out of the goodness of his heart, of course) so at least we know he’s over his fear of needles and blood.

Now we just have to wait and see if we make it through to the donor stage and if any of them will have an operation too. We’re saving up just in case, as I’m pretty sure that the price will be nothing less than a trip to Disneyland or an iPhone for the winner donor.