Saturday, 27 March 2010

Has it only been one week?

Another hospital, another post. It's been just over a week since I sat on a pull-down bed in the Royal Marsden and blogged that I was glad we had got the appeal launched. Now I find myself blogging from a fold-up bed in Epsom General after a really busy week that has seen the appeal start off much better than I could have hoped. We have such momentum and so many people not only willing, but wanting, to help. I wish we could bottle some of the enthusiasm and save it for when the going gets tougher. It's very early days, but I'm optimistic. I think the appeal has started off the right way, all we need to do now is keep it going the right way! Simple, no? Well it's already become apparent to me that I can't single-handedly take on the running and co-ordination of everything myself. Hopefully help is at hand and I won't have to try. We have already had some encouraging news on the media front. I'll be speaking on BBC Radio Surrey on Monday morning, my first media engagement since I did a Flash Gordon phone-in on Radio Norfok in 1980. This time my Mum won't be there to tell me the answers though. With a bit of luck there'll be some more media-related news in the near future.

On a medical front things have been pretty much as expected. Adam's blood counts have been dropping steadily since we returned home from chemotherapy on Sunday evening. Then today they hit rock bottom. He's having blood at the moment but I have little doubt that we'll be in here for a decent chunk of tomorrow too having platelets as well as his usual GCSF infusion.

Normal platelet levels are around 150-400. Adam's are 13, but they don't transfuse unless you are below 10 or symptomatic. The lower your platelet count the more susceptible you are to bruising and bleeding. So those 4 little platelets are making all the difference. I will be astonished if they are still above 10 tomorrow, my money is on 6. So far between each TVD cycle Adam has needed 1 or 2 blood transfusions, and 1 or 2 platelet transfusions. If it wasn't for the fact that we are here tomorrow for GCSF anyway I might have been tempted to get Jess to knock him about a bit and then seek a transfusion on the basis that he was symptomatic. On one previous occasion when his platelets have been this low I accidentally poked him and was horrified to see a bruise appear the instant I moved my hand away.

Being 6 years old Adam understands more of what is going on than some of the other children that we come across with cancer. He likes referring to things by their proper names. Where other children have wigglies Adam has a Hickman line. He takes Sando-K (potassium) and Septrin (anti-pneumonia). But although he's seen more, and been through more, than any 6-year-old child should, there are still moments of blissful ignorance. The blood that is now being infused into Adam to raise his Haemoglobin level is a perfect example. As far as Adam is concerned this is HIS blood. After all they take blood out of him almost every single day. Adam thinks they store it for him and then give it back to him in a big bag when he needs it. I see no benefit in telling him otherwise, I quite like his version.

We've just finished the nightly medication routine. On the whole Adam is a brilliant little boy with his medication (I can call him a little boy in print because he can't read yet). He takes pills wherever possible, the only exception being the potassium and magnesium supplements that he's been on for the past 8 months. These come as a large soluble tablet and a thick syrupy liquid. We mix them together and add some blackcurrent cordial to try and mask the taste. But it's still horrible and Adam still hates it. He must now be into the 200 and something consecutive day of having it morning, afternoon and night. Admittedly sometimes it takes longer than others to get it down him but I can't think of any time when he's actually refused it altogether. The biggest problem is getting the correct medicines dispensed. Last Sunday was the first time they have given us all the correct things to take home. Seriously. We get syrups instead of pills, chewy magnesium tablets instead of syrup. We think it stems from the time he had a feeding tube and all his medication changed from tablets to liquids. Or maybe we are being too kind.

As well as having low HB and platelets Adam is now 'Neutropaenic' i.e. his Neutrophils are 0. Nil. Gone. Neutrophils for those who don't know (I admit I didn't before last July) are white blood cells that are good at fighting bacterial infections. So when you have none you become both susceptible to infection and unable to fight off any infection you pick up. That's why at the first sign of a fever over 38.5 Adam is taken straight to hospital and started on a minimum 48-hour course of IV antibiotics. 48 hours is the time it takes for his blood samples to either confirm infection or come back clear. So far we've done quite well at avoiding infections, but badly at avoiding the temperature, and therefore the hospital stay. A clear pattern has emerged that says when Adam's Neutrophils go to zero his temperature spikes around 39 degrees. And that's why we've ended up in here for 2 or 3 days between each course of chemotherapy.

Despite having low everything Adam's been in remarkable good spirits today, as indeed he has for most of this week. The one noticeable change has been a tendency to become over-sensitive. One minute you can be laughing and joking with him and the next you take it just a little bit too far and he'll be in floods of tears and running off to his bedroom.

This morning in the post Adam received a large A4 envelope containing dozens of Easter cards from his friends and classmates at school. He was really really thrilled. More so than I have seen him about any of the other things they have done since he first became unwell. Tonight when we arrived at the hospital we laid together on the bed and went through each one in turn. He had already done the same with Jessica and his Mum earlier in the day when he came for his GCSF. They were all fantastic, but I must just mention that among all the 'Get Well Soon' messages I had a little laugh at the card from Charlie P which simply read 'Come Back!'.

Maybe it was receiving the cards, or maybe it's because we've been talking about school a lot recently with the fundraising they are going to be doing. But in the car on the way home from his second blood test of the day (the first sample got lost by the lab) he declared he was ready to go back to school again now. He wanted to have another little play with his friends and also see if anybody had any wobbly teeth (Adam has 2 and is quite proud of them both). I said we'll see how he is after the Easter holidays, but realistically I can't see it happening. Still it was nice to hear him talking about school in such a way. Maybe one day he will get his wish and go back to school, this time permanently. For our part we have to keep hoping and believing such a day will come.


  1. Hi there,
    I came across your appeal through a friend's blog. Just reading about Adam's enjoyment at receiving the cards, I wondered if you'd considered signing him up for I know that a lot of ill children have taken a lot of joy from the gifts and letters they've received from kind strangers.
    Just a thought!
    Wishing you all the best for Adam's treatments and with your fundraising.

  2. Hi Emma,
    I only found out about this amazing charity a week or so ago. I am literally in the process of filling out the forms and then he should be joining really soon.
    Thanks a lot,