T-4…really?! Already…. it feels like i have been waiting for this for years. When actually we have only been back in hospital since 26th Jan, although wow that’s 3 months already!!
So this morning arrived and Seth had again not spiked a temperature over night, another surprise! He received a Paw Patrol Jigsaw in the post from someone today which he thinks is brilliant. So he sat with the play specialist and did that whilst I took Nik for his GCSF injection.
Bloods today (the first number in bold is from today and the second number is from yesterday).
CRP- 90/295 – this is the infection marker for the blood. It generally works about 12-24 hours behind physical presentation (such as temperatures etc). The higher this number the more evidence of infection.
ALT – 369/224 – This is liver function so the lower the number the better.
HB – 86/88 – Seth struggles to maintain his red blood cells, he has recently been dropping 20 points per day, so a drop of 2 is excellent.
Platelets 92/73 – this is a normal drop for Seth, so hopefully this will improve now the old graft is gone.
Nik is starting to feel a bit sore and achy with the injections already. It is like flu symptoms with an ache in your bones. Its nothing incredibly debilitating but is there and does have an impact. As such were changing things round a bit this week and Nik is staying at the hospital more, whereas normally he would walk back to the flat (to get some form of exercise!) in the late afternoon with Hugo to spend time playing and getting him ready for bed. During the day Nik has to work so spends time in Seth’s room looking after Seth and doing that.
So we spend a lot of time swapping and taking turns with each child. This means ALOT of hand washing! Which results in BMT parent arms……. O my goodness my arms feel like i have dragged them along a cheese grater and then dipped them in vinegar! The brush that you have to use to scrub each time you go off the ward is amazing – it is potentially preventing me from giving Seth an infection that could risk his life. But dear god I think i will be wandering around with skinless arms soon….but they will be the cleanest arms in all the land!
Yesterday was the last dose of Treosulfan, so today he just had Fludarabine (chemo wise) and continues with he rest of the protective medication.
As the day went on Seth continued to be happy and engaged. He stayed in bed all day though and complained that he was cold. This child is NEVER cold, unless he is about to spike a temperature….. so his Nurse (who knows him very well ) and I were constantly taking his temperature and it was consistently around 36.5 – so totally acceptable and normal. I did his lunch time bath and afterwards he was shaking saying he was freezing. I dressed him and put him in bed with 3 blankets on top and he was still complaining he was cold. Something is brewing I am sure of it. But at the moment we have to wait and see what it is. He had a nap late on this afternoon and woke with a slight temperature (38.1) and did a small vomit, but is so happy in himself and decided that Daddy needed more stickers pulling off his arms. He’s not eaten anything today but has drunk a lot of water which is an improvement.
So as far as I am concerned something is brewing…….so we continue to take it day by day