So in this post, there isn’t too much to tell you about chemo-wise. This is because Chester has had 2 weeks off of his chemo to allow his body to recover. Although he still has to take his daily Imatinib and weekend antibiotics.
If you read our last post about weeks 2-3 of his chemo induction, you will know that we were monitoring Chester’s blood counts to see if he would need a blood transfusion.
We thought it was going to be his platelets that needed doing as they remained really low over the weekend, but the lowest they got to was 16. Even though he still kept bruising and marking all over his body, bless him.
However, when we were due to start the last week of this block of treatment his blood counts came back on the Monday showing they were too low to go ahead with the treatment that week, and also that he needed a Red Blood Cell (Hb) transfusion.
So we had to go to Salisbury Hospital on the Monday afternoon to get his blood topped up. After getting there and by the time we actually were given his transfusion, we got home around 10 pm that evening. The transfusion does take 3-4 hours also. So he was tired from having very low red blood cells, and also tired from a late night.
We will write up a separate post about his blood transfusion and what it involves and will link to it once we get around to doing it.
So although Chester only needed a Hemoglobin transfusion, he also could not complete his last week of the induction because his other levels were also too low. So he had to go on what they call a chemo hold. To be able to take the certain medications he is on this cycle, and also to have his lumbar puncture, his platelets needed to be above 30, and his neutrophils needed to be above 0.3.
Neutrophils are a type of white blood cell that help you fight off any infection and are part of your immune system. Chesters had dropped to 0 because of the chemo, meaning he has no immunity. Being so low he is classed as neutropenic, which means he is more vulnerable to any bacteria or infections.
We have to continually monitor Chester’s temperature daily. If he spikes over 38 we have to rush him into our local hospital and then he goes straight onto antibiotics. But when he is neutropenic we have to monitor him even more closely and watch out for Neutropenic sepsis, which is a whole-body reaction to an infection. It’s a serious condition that can be life-threatening.
So we had to pause his chemo for that week and the community nurses came out later in the week to monitor his bloods.
Unfortunately, his bloods were still not high enough the following week, so we had another week of chemo hold. I was a bit worried about him pausing his chemo for so long, but his consultant explained that if his white blood cells and other cells are really low, then the medication has done what they want it to do. So the leukaemia cells will also be getting destroyed.
It turned out that it was kind of a blessing that Chester had another week’s pause as I had turned 41 weeks pregnant, and his little sister made an appearance on the 26th of June. So Chester was around to see her and meet the new addition to the family – Aurora.
As he had been on hold for 2 weeks, he has also stopped feeling sick and has been a lot brighter, as his body has had time to recover from the nasty chemo drugs. So he has got to enjoy meeting his youngest sister and absolutely loves her. It’s been great that he has been at home! And also playing in the garden with Willow.
It was also Christians’s birthday on the 28th of June so again, we were all together to celebrate and enjoy it. although it was just a day at home chilling and playing games, we were all together.
Southampton also kindly arranged for us to have the cord blood collected from the placenta when Aurora was born, to be stored and tested to see if it is a match for Chester. This is just in case we ever had to go down the bone marrow transplant route, and using the stem cells from the cord blood would be a possibility.
So the last 2 weeks have been a blur as we have been enjoying Chester wanting to play more and feeling a lot brighter after not having his chemo for 2 weeks. And also having the latest addition to the family. It has been stressful, to say the least. But we are so happy Chester is doing so well at the moment and has been home.
