Chemo Day 7 !! :(

Evening all :)
Well..... as you have probably gathered from the title...Alex needed another day of Chemo today...the levels of Busulphan in his body weren't high enough so he's having mega dose today to top him up!! Those darn Neutrophils are hanging on for grim death!! LOL Another 6 hours of that as well as 4 hours of anti virals..poor wee man.

He has been struggling a little bit today ( hence no video today )  Sicky day today with a few spectacular vomits!!!..no temp or rashes though so not too bad..he has a sore tummy and is starting to look shabby..bloodshot eyes and pale as his sheets...
I finally managed to convince him to have a lie down this afternoon so he has slept for a couple of hours and feels a wee bit better now.

Eating and drinking has dropped right off today so he will definitely need fluids tonight and they are discussing TPN now..( nutrition through his Hickman straight to his bloodstream)  Perhaps, as they initially suspected, his colitis is going to be an issue and they may need to rest his tummy for a while to help prevent rejection....we shall see. They are deciding tonight or tomorrow...

As for us...we have turned poor Aunty Lou into Widow Twanky with all our washing...she is doing a fabulous job of keeping us supplied with clean clothes!!  We have a lovely little room at a house just around the corner from the hospital which is owned by The Sick Children's Trust....FABULOUS!!!!  It means Dave doesn't have to go and beg for a room at the accommodation office every day at 2pm....they only issue rooms for 1 night at a time!!!!!  It makes me sigh....:(  It's almost like GOSH devised ways to make parents lives the most difficult and stressful that they could and devised their policies accordingly!
Dave is not going back to work until after Christmas now as it is proving to be quite a hard job for 1 person to care for Alex 24/7.... we carry out ALL his care from bathing to changing beds to administering oral meds to cooking for, supplying with fluids...everything except IV drugs... Please don't misunderstand me..it is a pleasure to do it ourselves, however it is a hard slog when you are not at home and in a glass fronted 12 x 12 room :)

I feel human again today after sleeping in our little room with a real bed and a duvet...and a shower that is designed with adults in mind and not 3 foot high children!!!! hahahahaha...I had pasta and a lovely glass of red wine with Aunty Lou last night and even managed a couple of hours with the gorgeous lovely Emma and Kate today who fought through London traffic and the strikers to take me out for lunch and let me rant at them!! Bless them..they deserve a medal :) Thank you Ladies XXX

It always feel awful to leave Alex for any amount of time, but experience has taught me that I am much more use if I get out every now and then to eat a hot meal and not be in the hospital... Otherwise everything gets HUGE and everything gets really upsetting...My job is to smile when he isn't and be tough when he wobbles...Today I'm up to the job again!! :)

Hoping ( perhaps foolishly) that he won't get too much worse over next few days.... T day on Friday!!!!!  We have decided that 2nd December shall henceforth be his Bone Marrow Birthday and suitable celebrations shall ensue :)....any excuse for a party!!!

Hoping Alex is well enough to talk to you tomorrow, he is always so disappointed when he doesn't feel well enough to record...if he isn't I've been told to give you a tour of our little palace so that he can just wave feebly from the bed like Bette Davies :)  Drama Queen much ????
Still....... who can blame him!! LMAO

Hope you are all keeping well and happy.

Lots of love, night night XXXX