Alder Hey Oncology – Phase 3 Week 3 of treatment for Acute Lymphoblastic Leukaemia

So after a lovely few weeks off visiting Oncology at Alder Hey, George went to clinic in a great mood. It’s like the weeks off leave him totally refreshed so we’re grateful for the gentle phase of treatment.

Oliver had got off to a bit of a rocky start in the morning when he appeared pastey looking and complaining of stomach pains. NOT what we needed. Given it was only mentioned when it was time to leave for school and not for the whole time he’d played a computer game – off to school I booted him, with some reassurance i’d come and get him if need be and gave the office a heads up.

George had been being nil by mouth since the night before because he was going to theatre. Oliver and Harriet bless them have to eat their breakfasts like Ninjas in order to not get rumbled by Georgie Roo. It was only by the time it was about 1 – 2pm in the day he was starting to say he was hungry so he didn’t do too badly. We don’t torture him, so also don’t eat… which is not the cleverest idea! By 11am i’d already started flagging, the sneaky Actimel i’d necked in the car wasnt cutting it anymore so it was caffeine all the way!

It was great to hear George had put on 100g as they’ve been keeping a close eye on his weight loss. If he drops much further they’ll be thinking of inserting a feeding tube. Bizarrely, I’ve felt like as soon there’s a feeding tube in, he’ll suddenly look ill… and how are we going to get his salamis down it??

George holding playdoh
George made me a cauliflower whilst waiting

We met with George’s Doctor, Helen, who was really surprised to see him get out of his pushchair, playing with a plastic tea set and offering us all a brew and toy cake (the irony). She felt he looked really well and was even more impressed with what looks like a full head of hair! we know he’s lost loads as we keep finding it everywhere (can’t blame the cat all the time) but overall, you don’t look at him and think he’s bald. She said about 1 in 100 children don’t lose their hair but not to get too comfortable as the treatment in the next phase in May is much more aggressive.

That’s another thing George has not quite fell in line with, his bloods at diagnosis weren’t actually showing he had leukaemia like most other children’s. There were only 2 other cases in the whole year last year – he’s a little marvel.

Dr Helen Campbell did say that they are having to take him off his chemotherapy medicine (Mercaptopurine and Methotrexate – the ones we give at home) for a couple of weeks as his blood results are too low. This is all part of normal treatment I believe, they make adjustments based on how his body is responding. They’ll do another blood test and once his bloods recover, he’ll go back on the chemo.

We had a good old chat about the central line and what kind would be best for George. We were torn between the options as one will mean no more needles but it can’t ever get wet (think baths, showers, swimming, paddling in summer) and the other means it’s accessed with a needle but he’d be able to do most things that involve water. After the debate, we went for the port under the skin. We know its the ripping the adhesive tape off, squeezing his arm, the tourniquet, being woken in the middle of the night that’s contributed to the traumatic experiences with cannulas – It’s not necessarily the needle itself.  We chose the Portacath option.

George crossing fingers
George trying to do “fingers crossed” that he’s next!

George needs this central line as the next phase of treatment involves more intravenous medication and regular access to bloods etc. We’re looking forward to getting May and June out of the way.

After hours of going back and liaising with different medical professionals, we found a surgeon available who was available to insert his portacath and give him his spinal chemo too. It just meant we were on an emergency list rather than a scheduled one which meant some more waiting. I ended up leaving the hospital at 2.15pm to head to collect Oliver and Harriet from school… still nil by mouth but wired on caffeine (I did go straight to Subway for all those people who are about to text me).

bag and pink sleeping bag
Bag packed and not forgetting the pink sleeping bag!!

George had been given a pre-med before surgery today for the first time to save the anxiety he had with the anaesthetic mask and it worked a treat! he was flat out for the anaesthetic and went off with no problem. While he was down the nurses told Damo that George was going to have to stay overnight for pain relief – something we hadn’t anticipated, the pain or the overnight stay. So I drove to get the kids, nipped home, packed a bag, grabbed the pink sleeping bag and drove back down the M62 AGAIN.  It feels like I could get to Alder Hey with my eyes shut these days! (not recommended).

Oliver, Harriet and I arrived again and George was still in theatre – the waiting is absolutely awful, i’ll admit. But sadly I needed to get in and out of the place as Oliver was flagging and obviously we don’t want to be passing anything on to all the already poorly children.

We’d got all the way back to Warrington, been for a KFC (couldn’t be arsed cooking) and gone home again and George was STILL in theatre. Poor Daddy 🙁 he was in for about two and a half hours. He was still quite drowsy when he came to and just asked “What’s this?” about

George asleep with dressing on neck
Flat out and high on morphine following portacath insertion

the dressing on his neck and chest. He didn’t mention it again!  he had something to eat and went back to sleep.

Oliver went straight to bed without eating last night with his sick bowl/the mixing bowl and said the “unhealthy food is making me gag”, I’m a great mother aren’t I?

This morning George has just been waiting on having his cannula out, he’d needed it in case he needed a blood transfusion and then he’s ready to go. Daddy just sent me this photo, he looks like a Gallagher – both the Oasis type and the Shameless type.  He assures me he’s not grumpy, just concentrating on the tv.

George in a pushchair
George ready to go home

Mummy is looking forward to cuddles with Georgie this morning and maybe i’ll let Daddy have a little snooze…

7 Comments

  1. well done Team Nield/Rooza! I know what a massive deal this op was & how long you’ve been wanting it, so glad it all went ok. And Georgie can go swimming now!! (Well not right now but you know what I mean!) xx

  2. He is such a brave boy and you are a marvel. All that yesterday and you still had time to host your friends.
    However ,I am slightly disappointed with the omission of my prosecco lid art from this post . xxxx

Leave a Reply

Your email address will not be published. Required fields are marked *