Well once again the little guy has risen above the 2 diseases he is so gallantly fighting and convinced his doctors that his 3rd Birthday would be much better spent at home for a few hours with a Pop-Up Party rather than lying around a hospital bed. Yep, the only guy in the world with NPC and ALL is now 3 years old and despite the intense chemotherapy drugs that have been ploughed into his body over the past week he managed to put on the best show for his party. He certainly knows how to have a good time when he needs to, at least he’s got that good gene!!
On Friday evening his bloods low, heart rate up and he was generally feeling pretty unwell all around. But an early birthday present of platelets late Friday evening were enough to pick him up and help him shine through his 3rd birthday with much enjoyment and laughter.
The little guy wanted a bike, a helmet and a haircut, yes that’s not a typo, a haircut for his birthday. Last week we walked past a hairdressers and I asked him if she wanted a haircut. Well he thought that was one of the funniest things I’d ever said to him and he ran with it telling all of the nurses what he wanted for his birthday and watched with great amusement at their response to this ironic birthday wish. One of his other great gifts was a Fisher Price Hospital circa 1978 thanks to his Gramps and Grandma. There was one of these little FP hospitals in the nuclear medicine clinic where we spent the day once and he was totally obsessed with it. He actually has the Fisher Price Home which was his aunties original, nothing like a cool retro toy to be handed down a generation and now he has the hospital nothing like toys imitating life and I guess another little piece of irony in his life.
Here he is with his birthday loot
And not to be outdone, here is the brother with the hair cut Ed so desperately wanted
His birthday morning began with Debbie who stayed overnight, a visit from the music therapist to sing Happy Birthday, followed by a Birthday message from his fellow oncology mate Aiden via video since they are currently both in isolation and then a party from the nurses on the Variety Ward. All of this before heading home for the afternoon for a little celebration complete with an Elmo Cake requested by the boy and baked to order Isabelle? It truly was a happy and so great to see him in such fine form.
Yesterday I think he was suffering post party hangover blues as he was tired and flat and slept most of the morning. He did however manage to get home for a few hours in the afternoon, where for the first time in eages it was just the 5 of us at home hanging out all together and playing happy families- just what we needed.
He’s a little worse today with bloods continuing to drop and he hit a temperature which he hadn’t done for a few days so is back on the antibiotics. He received another transfusion this morning (there’s my reminder again to give blood if you can) and has a bit of a cough and cold so will be having a chest x- ray later this afternoon. His bloods will continue to drop until at least Wednesday or Thursday and they wont’t let him home until they see these trending up so I’m guessing we won’t be going home until at least the end of the week. He currently has tested positive to RhinoVirus (common cold) which is enough to keep him in a private room but will hopefully not progress any further.
To our beautiful Ed, the little guy who has totally changed my life, taught me amongst other things to live in the moment, how to love more, enjoy the now and appreciate all that life (both big and small) has to offer- Happy 3rd Birthday gorgeous guy!!!!