Another day closer and still taking it day by day.
Seth woke happy this morning, but had a temperature of 38.6 at 6am and a small vomit. He was happy to be left with the play specialist, dressed as a superhero (standard…), whilst I took Nik for his GCSF injection and when I got into his room he was lying down watching cartoons on his IPAD. But when I had scrubbed and got into his room properly he got down off his bed and we had a game of basketball!! However, he quickly tired and we then watched a DVD and he fell asleep.
Exactly the same as yesterday at about 1pm he started to complain that he was cold and asked for more and more blankets on him despite being fully dressed. Again we kept a close eye on his temperature and it was, once again, totally fine. He fell asleep and woke at 5.30pm and when i picked him up to put him on the toilet he complained that his skin was sore, so i ran his bath, bathed him and put his creams on. The whole time he was really upset complaining that he was freezing cold. But still no temperature, at 6.20pm he finally spiked a temperature of 38.3 and did one vomit. After the vomit he was totally back to his normal happy self! Sat up colouring in paw patrol characters!!!
His bloods today (the ones in bold are todays, the other number is yesterdays).
HB –77/86 – Seth’s cut off is 80, so he had blood today which made him a bit red. Hopefully this will give him a bit more energy tomorrow. Again it looks (fingers crossed!) like the speed his red blood cells are dropping at is slowing down.
Platelets – 42/73 – These seem to continue to be dropping at about 20 points per day.
CRP – 76/90 – This is still improving, so more head scratching as to why he is having these temperatures.
ALT – 353/369 – Liver function has improved slightly.
Also today we found out that Seth is no longer testing positive for HHV6 virus. Which is great news as it gives him one less thing to battle. It may return as he will carry it (as you would the chicken pox virus or the cold sore virus) but for now it is dormant. So they are dropping one of the anti-viral that he was on to treat it and halving the other. So hopefully this will reduce the impact they may have been having on his liver and kidneys.
The worry for me is that two days in a row he has been fine in the morning, then been complaining that he is freezing cold in the afternoon until he finally vomits and spikes a temp. He is also continuing to need Oxygen when he is asleep at night (but weirdly not when he is asleep in the day).
BUT 3 days before transplant I am happier with Seth than I expected I would be. I am entirely happy with him? No, but I did think we would be having more problems with the HHV6 virus and I had prepared myself for things to be incredibly difficult this week. However, the effects of the chemo can take 7 to 10 days to come into full force, so we have that to come, alongside him receiving stem cells and us waiting to see how they react to his body. We have a difficult few weeks ahead, but like i say day by day, and today, we’re in a better place than i expected to be.
Tomorrow, well tomorrow we will see.