Damien didn’t get his one night out in while after all last Friday night 🙁 unfortunately, George developed a temperature so Daddy had to rush back to look after Oliver and Harriet while I took him off to Alder Hey. Luckily, I’d just tucked into an absolute feast as our friends had come round for a few hours and Andrea had ordered a fat take away. So fuelled up for the night, off Georgie and I went for another sleep over.
All the days are merging into one with a lot of to-ing and fro-ing and juggling of the kids, all I can tell you is that it’s been harder than ever. No doubt about it, it’s been one of the biggest challenges I’ve ever faced, I don’t know about Damien (he’s in a relationship with me, I’m sure that’s not far off!).
It’s the staying strong while George is suffering – an afternoon here and a day there is all we’ve had to handle in the past of him being really unhappy so you sort of appreciate when he’s better and try to forget. This time it’s been a gradual decline at home where I’d started fretting, then he’s spiked a temp and we’ve come in for IV antibiotics and pain relief for mucositis…George had ulcers and blisters running from his mouth through his digestive system to his bottom. This is a side effect that 40% of people get who are receiving the same kind of chemo as George.
It was meant to be a relief for all of us coming in, pain relief for George and reassurance for us that he’s safe and things are being monitored. Unfortunately things got worse for about 3 days…
At about 1am the night before last, after not sleeping for days and having hours of George crying in pain, begging for food that he couldn’t get in his mouth and him shouting at me “why are you not my friend any more?” and “I just want to make you happy!!” I thought I was cracking up… I cried, I asked the nurse do they ever get parents just walking out saying they couldn’t do it any more? Obviously, I was going nowhere, I just felt consumed by helplessness and selfishly wanted it all to go away. I continued to try to comfort him and tell him Mummy will always be his friend and that I love him very much.
It was at that point that the staff changed his pain relief from Morphine to a Fentanyl.. I’m not sure what the difference is, it was just another option and we just wanted something to work for him. So he has a little button we press when we feel he needs a little more… at one point it was whenever he coughed, yawned, sneezed or tried to drink/eat. It turns out some of his irrational crazy shouting and crying was actually a side effect of the morphine as the constant crying settled slightly once he changed drugs.
On Sunday night one of my good friends offered to keep me company, though not being one who gives a sh*t about anything… she turned up in a MASSIVE Minion costume. I’d like to say it went down great, and it did with all the other kids, but not really with our George. Stepping into our room and doing a little dance was a step too far and we had to banish the Minion back to the corridor.
Andrea Davis you are an absolute legend! The comical part of the story that will be passed down generations to come is that once the Minion when to get changed back into their every day clothes, she twisted funny on her leg and said she felt a snap :-/ Next thing is, sweating she’s hopping out of a disabled toilet, with a load of little kids stood outside waiting for the ‘Minion’ saying “I’ve just seen a Minion in there!?” quite obviously in agony dragging herself back to our room where I was trying to comfort a petrified George!
Poor Andrea, she meant well and made a lot of poorly little children very happy posing for photos, but I’ll never forget that day. The nurses were great, gave her ice, pain relief and even a wheel chair! Andrea’s dad and brother had to come from Manchester to rescue her <inserts crying laughing face>
Yesterday Daddy was on duty and had to deal with the gripper attached to Barry falling out (if you don’t know who Barry is, you need to keep up). This meant freezing cold spray and pinning George down to insert a new one…. which missed…. so they had to do it again 🙁 poor Georgie and poor Daddy.
Meanwhile I managed another bike ride with Oliver and Harriet to a local beer garden for lunch with our friends Kath and Lola. It was nice to just be normal for a bit, watch the kids make up dances and play football etc, even if I was functioning on about 4 hours sleep. Last night I settled in early with a book and had a blood good night’s sleep.
George was up from 3am for Daddy but has made up for it today with a little nap. Dare I say he has a twinkle back in his eye too… he’s say here now trying to eat one bean at a time (at 10.30pm!). He’s actually been upright and wandering around a little so is definitely on the mend.
We also met little Theo from Warrington today who I may have mentioned on my FB Page or possibly personal page last week. His family and friends are desperately raising the money in order for him to have Proton Beam therapy in the USA. It’s an upsetting story where Theo was given 8 weeks to live before a surgeon offered to try removing it here at Alder Hey. The surgery was successful but he now needs treatment like George but due to the nature of the cancer, it isn’t as straight forward for him – his safest option of treatment isn’t even available here in the UK. You can read his story and/or donate if you want to here.
We spoke with the consultant this morning who has told us that George’s longer dose of chemo that was supposed to happen on Thursday has now been delayed until he is well enough to receive it. Hopefully that will just be next week as we don’t want this phase dragging on. George is still neutropenic (you should all be experts in this by now… low neutrophil count that fight the bad stuff) so it means he needs to stay temperature free and also not rely on the pain relief to drink before we go home. Doctor is hoping Thursday we’ll be released back into the wild/
I’m home with Oliver and Harriet tomorrow so better get my thinking cap on for trying to have a nice day with them while we can. Back here, thank God for Lego, my mad mate Andrea who’s been back for more tonight with Kurt to keep us company, the play workers as usual, the super supportive nurses and the very patient chef!