The last two weeks have been not too bad as we still haven’t been able to move on to the next stage of treatment for 2 weeks. This is because Chester’s neutrophils (immunity) were too low to do the bone marrow aspiration, which will decide the next phase and intensity of his chemotherapy.
But we have been able to do lots of playing, crafts and playing in the garden. Chester has been a bit tired and nauseous and has not felt like eating much, but unfortunately, it’s all side effects of everything.
Following on from his NG tube being fitted and after the red blood transfusion he had the previous week, his blood counts and Hb counts were recovering. However, his neutrophils were too low and he had no immunity.
They like them to be above 0.5 so that when they take a sample of his bone marrow, they get a more accurate result and can see what his bone marrow is producing naturally, without any help. Whether it’s normal cells or just more Leukaemia blasts, which are not good cells.
When he has this test he has to be put to sleep again! Then they insert a small needle into the bone and take a sample. Last time they took a little bit of bone as well, as they couldn’t get a good result.
They do these checks at certain points during chemo, to see how well Chester is responding to it and to decide on the next steps. This biopsy will determine which branch of treatment Chester will be on next; high risk which is very intense with the likelihood of a bone marrow transplant, or standard risk which is slightly less intensive.
So we have been panicking about this but now have to wait until next week.
In the meantime, we saw the community nurses a couple of times to check bloods, change his dressing, etc.
And a little bit of stress was over as Chester was getting his meds in him after previously refusing them, as we are doing it all through his tube at the moment. So we had to get everything in liquid form.
We did try to dissolve his weekend antibiotics in water and put them through his tube, as we didn’t have the liquid that weekend. But it almost clogged the tube. But it has taken the fear away from him and he has got used to the tube. The hospital gave him some cool designs like PlayStation tape and a Super Mario one, to put over the tube to hold it in place.
It is also a nightmare doing the tube as we now have a monthly order and have to find space for all these boxes of syringes and spare bits and bobs. His Imatinib also only comes in tablet form so it takes ages every day trying to dissolve it in water.
Before each med, we also have to check it’s in place by pulling a small amount of stomach acid out using a syringe and then testing on a pH strip. It has to be below 5.5.
We finally gave Chester a haircut! It was long overdue. We would have done it before but then we didn’t get around to it as he became ill and then diagnosed. When I tried to do it he was too ill.
When we saw someone with cancer we associated the illness with being bald and didn’t realise it was the chemo that caused it. The doctors said he would lose his hair straight away. But he still has it and we couldn’t bring ourselves to cut it before. One med made Chester shed really bad and there was hair everywhere, but it’s started growing again.
It turns out not everyone loses their hair. Some do, and some just go thin. Most of the chemo drugs cause hair loss as they kill off healthy fast-growing cells, but different meds cause people to react differently. It’s just so sad that we have to pump our kid full of toxic medicine which makes him so ill and even lose his hair, but it’s the only thing that can get rid of his cancer.
Because his hair was quite thin and patchy in places we thought it was better to go shorter. It’s also better now it’s summer and he gets bad night sweats. It did break my heart though as his hair has always been amazing and long and soft, even when born. But it’s quite dry and wispy now.
The other thing that happened was poor Chester having to have another tube put in. He was feeling quite queasy one morning and didn’t want to eat much. When he’s like that it’s nearly impossible to get food and drink on him. Unfortunately, he was sick. This was the second time that week. The first time Christian managed to hold the tube in place even though it kept trying to come out
This time, it was more forceful and the tube came out when he was sick. It was quite disgusting as it was hanging out his nose and the other end hanging out of his mouth. So Christian had to pull it out.
One of the community nurses came out and had to put a new one in, but did it on the other side. Although Chester was prepared for it and happy to have it (he chose it after we gave the option of a tube or pills), it still really distressed him and was horrible to watch! After a couple of days, he got used to it again though.
Luckily the weather improved so we were able to get out in the garden and sort it out. It had become a jungle as we just hadn’t had time to do it. But we had a rare hour where Aurora was sleeping and the others were playing, so we got to sort it. Chester loves the garden but gets tired quickly, and his tablets make his skin more sensitive to the sun.
His bone marrow biopsy was postponed for another week as although his other blood counts had increased his neutrophils were still too low. So we will have to wait and see what happens the following week.