Chester has finally finished his second chemo induction for his B Cell ALL, for the Philadelphia positive chromosome. After a 2 week hold, we completed his last weekly cycle, and it was not a pleasant one for him this time.
His bloods were taken on Monday having been previously low, to see if they had recovered enough to continue with the final week of induction B on the ESPHALL2017 trial for leukaemia. As his counts had recovered enough, we were good to go ahead. Luckily, he was feeling brighter of some days so we managed to get out for walks whilte it was dry.
He had to restart taking his mercaptopurine which had originally made him quite nauseous, and we had to do his final week of daily cytarabine. We had to yet again travel all the way to Southampton Hospital to get his lumbar puncture done under a general anesthetic, and for them to administer his IV methotrexate. We then got his cytarabine dose and the rest to bring home. For the first time, I was unable to go with Chester, as I had a 5-day-old Aurora to look after. Plus I hadn’t recovered myself! I was worrying all day, but he was ok.
As soon as Chester started the induction meds again that week, he became quite sick. He went straight off his food again and didn’t want to eat much at all, as he felt sick all the time. His anti-sickness meds started to not help and he kept throwing up. It became a bit of a bad cycle as he wasn’t eating much, so then took all his tablets on an empty stomach with lots of water, which then made him vomit. We had a horror scene most days with sick all over the sofa, carpets, bathrooms, kitchen floor, etc. He then felt so sick he was struggling to take his tablets as they kept making him retch, and then he would be sick 5 minutes later. We had to repeat some doses of his important chemo meds.
We then had to go back to Southampton Hospital on Friday for his cyclophosphamide, which was the same as day 1 of induction B. The toxic drug is pumped through his central line for half an hour and then followed by 5 hours of fluids to help flush his body out. This is to help prevent the common bladder irritation. Unfortunately, Chester suffered this time with the common side effects from cyclophosphamide which is frequent urination and he kept thinking he needed a wee, so it was a long night. He was also sick at the hospital several times and luckily someone else was around to grab a sick bucket!
That Friday and over the weekend his sickness got worse. He was ok in himself but just couldn’t keep anything down. So he started to worry about taking his tablets. Although we got to the end of induction all the other tablets had stopped. But because of Chester’s rare Leukaemia, he needs to take the imatinib daily. It started to take all day to get him to take them as he was so scared and just kept stalling.
This went on for a few days and it was getting worse every day. It was one of the most stressful weeks for us. Chester just kept refusing to take his tablets, but we were so worried as these are important to help with the Philidelphia positive side of his cancer. The prognosis for people with this type of leukaemia was extremely poor but with the imatinib, it has improved so much. So we were so stressed and getting ill as we were worried. On top of all this Willow was ill and teething badly and then we have newborn Aurora, which added to the stress. We had our parents around to try and help and they experienced how bad and stressful it was for us!
But being nice, bribery, and being firm did not work. We got to the bottom of it eventually after a week from hell, and he finally told us was so scared to take the imatinib as they apparently taste disgusting and smell horrible. Chester was then so scared he would be sick if he took them. Even though he was eating well again and not sick anymore, he had a mental block and it was psychological, and he just couldn’t bring himself to take them. He was literally shaking!
We couldn’t get hold of anyone to help and no one from the hospitals were getting back to us. But after the community nurse helped and lots of chasing, Southampton Hospital sorted us a different brand of tablets to try which apparently have no taste. They said it was OK to miss a couple of doses but as Christian was so worried he drove all the way to go and get them. Even though we explained to Chester that they were special new tablets with no taste, he was up for trying them. But he started stalling again and it became very stressful and another few hours were gone. He just could not get over his mental block.
We made one last attempt with the community nurse on thursday as he loves her, but she spent an hour with every trick in the book and he was just too scared. She said he would have to have an NG tube fitted. We didn’t want to go down that route and didn’t think he would like it, especially as they said they would have to hold him down awake to put it in. But we weren’t getting anywhere and he said he wasn’t going to take any more tablets. We had even tried dissolving them in liquids and also in food, but he could taste them. His taste and smell have changed a lot since the start of treatment and he has spidey senses.
So Christian had to take him in later that day for the NG tube which is a thin plastic tube inserted up his nose, down his throat, and into his stomach. He had to be held down by the nurses while it was done and screamed the hospital down. It was heartbreaking. But his way his meds can be given directly through it in liquid and he doesn’t feel or taste anything.
He literally screamed and threw fits of anger for at least an hour wanting it taken back out. He did calm down in the end but didn’t talk much all day and was very sad. It didn’t help that his blood counts were also low, and he needed a transfusion the next morning.
The next day he had another red blood cell transfusion. But he then cheered up and slowly got used to the tube. We took turns staying with Chester one night each, as we had to learn and be signed off on how to use the tube for his meds. Chester liked learning too and being helpful makes him happy.
Having only been on it a few days Chester has gotten used to it and is ok with it now. I think he was so brave taking everything in tablets but he said he needed a break from taking them. It’s taken the pressure off him and the daily stress and battles have now gone. He had his blood transfusion on Friday, and we were allowed home on Saturday afternoon.
So these last two weeks have been hectic and stressful. But Chester has started to feel less sick and more relaxed, making it less stressful for everyone at home. He can have the tube taken out at any point so he may start taking tablets again if he gets fed up with it. You can also get cool stickers/tape to hold it in place, so I’m sure he will choose some cool ones to help take his mind off it.
If it comes out it will have to be put back in, but he may then choose not to. So we will see how it goes. We also now have a lot of things extra to do each day for Chester, as preparing, testing, and sorting the tube and meds that go in it, takes a lot of time.
Next week he has a bone marrow biopsy coming up so he has a little break before then, just bloods to check his counts. That’s why it was such a shame having the tube as he only has to take one lot of tablets a day at the moment. But it’s taken away that fear for him.