It’s been another roller coaster of a week – one minute we’re rolling round laughing, toy fighting and forgetting it all for a moment, the next we’re back to worrying, juggling the kids and rushing to hospital.
The football has been on and I’ve enjoyed watching Daddy struggling to watch a complete match with the kids knocking about. It’s been a comedy sketch of climbing all over him or digging out the noisiest toys known to man to blast out just when you’ve settled down.
Thursday was the first day of a different kind of chemo called Cyclophosphamide that George has for four consecutive days. He had it for four days last week following his 5 and a half hour one. We’ve felt really relieved this week for him to not really suffer many side effects as I’d really built myself up and was fearing watching him suffer with those ulcers again.
Instead George was so well that he even managed a few stints at Playdays this week. As you can see by the smile on his face, he had a great time and we’re glad he’s still getting to see his friends during the final weeks of preschool before, dare I say it, big school in September!? The couple of hours gave me some vital time to do a bit of shopping for his birthday this weekend and a I even managed to get out for lunch with my friend Paula for a much needed de-stress.
On Thursday I’d starting feeling anxious about the nurse coming to access “Barry” the port with the gripper to administer his chemotherapy. One of the main problems we have, as I’ve said before, is ripping off the bloody adhesive tape that’s used to hold the numbing cream on for an hour. I changed it up though, Blue Peter style, with cling film and a very still child, we managed to apply the cream and leave it there under the cling film to take effect. Ta-dah! no painful peeling of tape an hour later and a much calmer Georgie. He was sat there “King George” literally being fed grapes watching his favourite programs.
Our good friend Nic came to my rescue to help distract George and make him laugh while the nurse prepared everything. Even when the needle missed first time and he had to have it done again he did great, mainly because Nic was there clowning around and getting him back on track when he’d started to get upset.
Later in the day I did have to deal with an exorcist scene where George full on puked 360 degrees. I still can’t say I enjoyed cleaning the cottage cheese veg combo up even if I was satisfied it was at least on the laminate floor. He just got himself a wipe, cleaned his face and carried on playing, leaving me with tears streaming from wretching, having to clean it in 2 minute intervals so I could recover.
We also had a visit from Lynda of The Joshua Tree this week who regularly pops by to catch up with us and check I’m not rocking in the corner. It was good to talk about how we’re all doing emotionally, how George is doing and just having someone who understands exactly what you’re going through listen. Linda had very kindly brought some well-received gifts for all three children, of course it was Lego for George!
The Joshua Tree has been a great source of support for us so it’s been lovely to hear a few friends have chosen them as their charity to raise money for recently – I know Anthea is definitely one of them!
Strange how things happen, we’d been trying to persuade George to get cycling for ages and had pretty much given up for now, accepting his little are probably just too sore now. But I think with a combination of practising on a trike at nursery and pure defiance, here’s a picture of him bike riding to pick Harriet’s friend up the other day…. defiance because i’d said “you’re not going to be able to do it George” (Mother of the year!), so of course he had to prove me wrong. Yes that’s a man sized helmet for his huge Rooza-cranium.
I had the pleasure of meeting the teacher that George is going to have when he starts in Reception this September. I briefly popped in to the school office and ended up chatting to her about what to expect… the idea was to reassure her that she’s not going to be responsible for doing anything out of her remit, but just what to look out for. I told her about his diagnosis and how everything came about, how hard it has been and the kindness of others even right up to this day and and she was in bits bless her. I’m so glad we had that conversation though, it’s really filled me with confidence that we’re doing the right thing for him… she is such a lovely, caring woman, I don’t think I’d want anyone else!
My friends Andrea and Anthea visited last week too, forgot to say! Here they are listing every item from the Argos that George wants for his birthday… my soul is already destroyed from months of this! Thank God it’s tomorrow and lets hope he’s been listening when I’ve said “you know you’re not getting everything right?”.
This morning George’s temp had jumped up to 38.4 so I off I went just after 7am to A&E at Alder Hey. His temperature went up to 39.6 and his blood pressure and heart rate were elevated. After a load of messing about we managed to get up onto Daycare after 9am and George was kept in for observations and blood tests. If his neutrophil count is 0.5 or below he’s classes as ‘severely neutropenic’ and so would have to be admitted for 48 hours which obviously with a certain birthday looming we could really do without. George’s count is 0.7 so is borderline due to the chemotherapy he’s on… throughout the day his temp hasn’t dropped to within a normal range but after thorough assessment and plenty of pleading from George, Kev, his ANP, agreed for us to go home on Calpol until tomorrow at 7am.
I wish I could say he’s been back to his usual self but he’s not unfortunately. He’s complaining of pains in his legs, his eyes hurt, he looks like a beetroot and has a speckled rash. These are side effects of the chemo too so we’re just staying put at home for now. I did make a bit of a frantic call to Oncology a little earlier as his temperature is now hitting 40 and we were wondering at what point it’s too high to stay here. We’ve been told to just follow our instincts pretty much so we’re keeping an eye on his breathing and checking his hands and feet aren’t feeling cold – it’s going to be a long night!
You can bet your money we will be in Alder Hey tomorrow, he’s got through the night to get below 38 degrees! It’ll be a good story to tell though and more reason to drag out his celebrations.
Just a few more thanks for more lovely gestures from our friends – thank you for the box of Lego to the lady who is a friend of Laura Linley, I didn’t catch your name but George was so excited to build a big aeroplane! and thank you Rachel Groarke, your girls are so thoughtful to think of Georgie even when you’re on your own holiday! he loves his message from Bradley and Rory from Hafan Y Mor.
Tonight, I’ve been holding off writing George’s birthday card because I feel overwhelmed with emotion when trying to find the right words to say. I want him to know how proud we are of him for keeping strong, how much we love him and how much better his birthday will be each year from now onward. He’s had dealt with more crap than most adults have had in their entire life, yet he still bounces back smiling, resilient and gives us so much back. Seriously, I’m welling up just typing it.
Then I realise he won’t give a shiney shite when he realises he hasn’t received every item from page 1475 of Argos onwards…
So for now, good night, hoping for a decent night’s sleep and a boy feeling much better for some 4th birthday celebrations.