Sunday, 11 April 2010

Easter, or what I remember of it...

You'll have to forgive me. I know I said I was going to tell you about Easter but I'm afraid I've already forgotten the first half of it. With the extra processing load my brain has to accommodate these days it uses a 7-day circular buffer. So the events of Good Friday and Easter Saturday have been overwritten by the last two days and I am unable to recall anything that happened. Some of you skeptics may think I'm just being lazy and minimizing my blogging effort. I'm not. Seriously I cannot remember what happened.

[There follows an interruption whilst I consult with Alison as now I'm bugged that I can't remember what we did. And unless I figure it out I'm not going to able to concentrate on anything else I'm writing.]

It transpires that on Friday Alison & Jess had a nice time making an Easter table centerpiece at the Embracing Earth event in support of Adam's Appeal. What Adam, Jake and I did is definitely expunged. Probably not much except in the morning I took Adam to hospital for GCSF.

On Saturday morning it was Alison's turn to take Adam to hospital for GCSF. Saturday was also the morning that I had my vision of a couple of posts ago. But actually it turned out to be a nice day. Jake and Jess went to friends and then on the spur of the moment Adam and I met them up on the Downs. They all really enjoyed themselves and consequently so did I.

Those that really know me will testify to my need for neatness and tidiness, my fastidiousness, my leanings towards obsessive compulsive behaviour. But all that (ok, most of that) has been thrown into disarray by Adam's illness. I wasn't joking up above. I honestly can't remember most of what I did just days earlier, except after very careful thought or finding something to jog my memory. And I'll be talking to somebody and then suddenly be unable to finish what I was saying. My thought process gets interrupted and whatever was supposed to come out next vanishes. Gone. It's actually quite embarrassing and I often find myself having to apologise for it.

Easter Sunday I do still remember. It was the day of the big treasure hunt. Which also now reminds me what Alison and I spent a good chunk of Saturday night doing. Hiding Easter eggs and putting a treasure map and cryptic clues together to reveal their locations. Adam appeared at the foot of our bed just after 7.30 on Sunday morning. "Dad, Did you do the treasure map? ... Dad, Did you do the treasure map? ... DAD, DID YOU DO THE TREASURE MAP?"

The treasure hunt that took about 1.5 hours to construct took about 10 minutes to complete. But I think it met with approval. Or perhaps the prize at the end made up for any failings. Either way none of the children had any complaints.

We'd been told that Adam didn't need his GCSF on Sunday. His blood results from the previous two days were sufficient for him to begin chemotherapy on Wednesday, and he needed 48 hours free of GCSF before he could start. My sister and her family were coming down for a visit so hopefully it was going to be a nice hospital-free day. At the back of our minds though we were both slightly concerned about Adam's blood counts. Over time you come to realise that nobody has the same understanding of your child's response to treatment, and recovery from it, that you do. So although his counts were above 1 for 2 consecutive days we knew it didn't mean that they would stay there. Experience had taught us that it was actually unlikely.

Sunday afternoon was the kids doing their sponsored relay round Alexandra Park. We got there just after 3 to be greeted by a few spots of rain. Great. As it turned out those few spots were all there was. Jake ran, Jessica scootered and Adam cycled. Twice round the perimeter of the park each. I accompanied Adam's second lap on foot just to prove how unfit and out of condition I'd become during the past 9 months. I helped him negotiate the uphill section and he thanked me by speeding off downhill and leaving me puffing and panting some way behind. We didn't want to make a big thing out of the event just in case Adam wasn't well enough to do it, or the weather was really bad. But it all turned out great. Everybody had fun. And after he'd finished his cycling Adam even had enough energy left to go play football with his brother.

Which brings me to an observation about Adam's condition. Sometimes he looks poorly. Sometimes he's miserable. Sometimes he wants nothing other than to lie in bed, or on the sofa, and watch TV. And sometimes he is too weak and his body hurts too much for him to walk from the car park to the hospital. He has to be pushed or carried. But once he is through the worst of the after-effects of chemotherapy Adam is much like any other 6-year-old boy. Albeit one with an IV line coming out of his chest, no hair, and a couple of paranoid parents ready to reign him in whenever he gets a little too daring. I don't know whether people truly get how seriously ill Adam is when they see him. We've met a number of children during our journey that I know are in a better position than Adam, but when you look at them you'd think precisely the opposite. And similarly other parents have remarked how strong and how well Adam looks. And yet we know the reality of his test results that show the extent to which the cancer is still present around his body. I'm glad Adam looks well on the outside, I just wish with all my heart that he was well on the inside.

On Monday I got concerned again that Adam wasn't having another blood count done until Tuesday, with chemo due to start again on Wednesday. For the sake of a 30 minute trip to Epsom General we decided to have them checked. We had GCSF in our fridge still, but the expiry date was 9am on Tuesday so we had to use it or lose it. In the afternoon his counts came back and his Neutrophils were exactly 1. So we called the Royal Marsden and had another trip to Epsom to have one more infusion of GCSF that evening. Without it we'd almost certainly have not started treatment again on Wednesday.

Fast forwarding it's now Sunday night and Adam has started his 48 hours continuous chemotherapy that will go on until late Tuesday afternoon. I'm finishing off this latest post. I always seem to write these things in here. I guess there's not a whole lot of other things to do, especially once Adam is off to sleep.

Yesterday I had a long chat with the head of the childrens unit here, who is also the UK's leading expert on Neuroblastoma. Hand on heart I can honestly say there is nowhere I would rather Adam be treated in the UK than in the Royal Marsden. As traumatic as this whole situation is I know we should be thankful that we ended up living where we do. There is a plan for where Adam's treatment goes next. But nothing can be certain until after his next set of examinations at the start of May. For now I'm a little more calm, a little more reassured that there is some light at the end of the tunnel. Reassured until the events of yesterday get overwritten.

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