Following on from our last post about Chester starting his next phase of induction for his chemo, it has pretty much been the same for weeks 2 and 3.
At the beginning of week 2 of induction 1B, we had to go into Southampton Hospital for Chester to have a lumbar puncture. He has already had a few of these, but it still doesn’t make it any easier.
They have to put him under a general anesthetic, which luckily can be done through his line so it’s pretty instant. But he hates doing them, especially as he can’t eat or drink on the morning of the lumbar puncture. He also gets really upset beforehand, and it breaks our hearts to see him go to sleep every time and get so worked up and scared.
The lumbar puncture is where they insert a long needle into the vertebrae in the spine. He has been having these quite regularly at the moment as firstly they administer some of his chemo through it called IV methotrexate. They also check at the same time that the leukemia cells have not spread to his brain or spine. Luckily when he was diagnosed there were no traces of them in his spinal fluid.
He has to lay flat on his back for at least an hour after the procedure while he is coming around, to help with side effects such as bruising, a bad back, and headaches. He is usually quite sore and doesn’t walk or move much at all for the next few days.
We then had to wait for his got his first dose of cytarabine so luckily the Xbox was free in the playroom and kept him entertained for a few hours.
We bought the rest home for the week. We also collected some anti-sickness tablets as Chester does not get on with the liquid form, as the liquid makes him throw up! We also got his weekend medication in tablets too so that he doesn’t have to take any liquids.
The community nurses come out daily for the rest of the week to give him his daily dose. They also check his blood counts to make sure they are not getting too low.
With the latest chemo drugs mercaptopurine and cytarabine, he has been feeling quite nauseous and sick with it still. He has been sick a few times and has really gone off his food. We have had to keep up with regular anti-sickness medication to help him eat and not feel so rough.
The current chemo that he is on also affects him in the sunlight. They can make his skin more sensitive to the sun, and he said it was too bright for his eyes. But he was also cold at the same time, as his Red Blood cells were quite low. So he looked like a little old man when we went out for a ride in the wheelchair.
Week 3 was the same, just no lumbar puncture needed this week. But we have to do the 60-mile round trip to Southampton to get his first dose of the week and bring the rest home.
Chester’s blood counts had been dropping throughout the week and his platelets and red blood cells (Hemoglobin) were getting lower and lower. They have to monitor these because if his Hb drops below 60-70 or his platelets drop below 10 then he needs a transfusion.
The red blood cells are what carry the oxygen around your body and when they get low he is very pale, tired, and basically really emotional and grumpy! The platelets make your blood clot so when they are low he would be prone to bleeding and it not stopping and also lots of bruising.
He also started to bruise very easily and he was coming up with all sorts of bruises and marks over his body because his platelets were getting so low.
He had a red blood cell transfusion when he was diagnosed as leukemia was destroying all of the good cells in his body, but this time it is the chemo that is doing it. This is because they have to kill everything off and can’t choose which cells. If his platelets are too low and also his white blood cells, he won’t be able to ahead with next week’s cycle and will go on a week’s pause. But fingers crossed he won’t need a transfusion.
So the last couple of weeks Chester has not been feeling too great and quite sick and nauseous, but he’s still handling everything really well. He’s still managing to take his daily tablets and be his cheeky self through it all, and sickness aside he has actually been a lot brighter in himself and wants to play a lot more with his toys.
He has also been able to take a few steps unaided and move around a lot more, which has made him feel happier in himself. We have even been out in the garden and got him walking around with Willow, which he loves to do as a big brother.
