Tuesday, 20 April 2010

This week...

Lots of hospital time this week with various things going on.

Adam was at Epsom General on Saturday and Sunday morning for his GCSF. Takes about 1.5 hours to get bloods taken, hooked up, infused, flushed and hep-locked (which is given to clear his IV lines after every use).

Monday was supposed to be day off from hospitals - just GSCF at home. But Adam's blood counts came back and his platelets were 8, which is very low. So he went up to Epsom in the early evening to have an 'orange bag'. Platelet transfusions themselves don't take long, 30 minutes maybe, but the problem can be the length of time it takes between them being ordered and arriving at the hospital. Fortunately yesterday the timing fitted in quite nicely. Once we got back Alison had to go to the Marsden to pick up the next batch of GCSF. There is always something.

Tuesday (today) it's GCSF at home in the morning and then an echo cardiogram at St George's in the afternoon. This is to assess any damage done by the doxorubicin which has known cardiotoxicity.

Wednesday morning it's a trip to the Marsden to have the MIBG radioactive agent injected into Adam's bloodstream. This is a bit of a time-consuming exercise as they don't like using the IV line for the agent as it can stick to the inside of the line and show up on the scan. So Adam has to have some 'magic cream' put on and then have a cannular inserted into one of his hands. The stuff still hurts though when they inject it, the severity depends on how well the doctor has put the cannular in. Adam doesn't like this very much at all.

Thursday it's MIBG scan where Adam has to lie totally still for 1.5 hours whilst they scan him from top to bottom. Any areas of disease are highlighted as the agent binds to the cancer cells. Worst part is when he has to lie face up with this huge machine about 1 cm from his nose for about 8-10 minutes. He can't see the portable DVD player, he can't speak, he mustn't fidget.

Friday it's bone marrow tests - aspirates and trephines. The former is where they use a big needle to suck out semi-liquid bone marrow, and the latter is where they drill out a solid piece of bone marrow. If you want more information look it up on Wikipedia. There's nothing fun about it. Adam will have this under general anaesthetic and if it's anything like before he will have a 30 minute screaming and shouting fit once he comes round. I hated it when I was there to witness it myself. I was physically unable to leave him alone to get over it himself, and consequently got a smack in the face as a result.

Saturday & Sunday Adam will be rather sore. Undoubtedly I'll forget about this and I'll give him a hug and Adam will recoil in pain shouting 'Ow, Ow, you touch my holes'. And depending on blood counts we'll be back in Epsom again for more GCSF to try and help his blood counts recover for whatever comes next once the test results are back.

Oh and this all pre-supposes that he won't spike a fever and have to go into Epsom as an inpatient for minimum 48 hours IV antibiotics. It's only after the 5th cycle of TVD that this didn't happen, and even then it was touch-and-go, for 48 hours or so his temperature hovered just below the threshold above which he has to be admitted.

And finally lest anybody needs reminding Adam is a little six-year-old boy who should be starting a new term at school this week...

1 comment:

  1. I cant imagine what your all going through not least Adam but as a parent I have no doubt how unbearable it must be to have to watch your child suffer like this. Thinking of you all x