Whilst I know that it is cancer that has put us in this insane predicament I am acutely aware that the side effects are often the part that make us stare endlessly into the abyss of doom…the shadow of potential death never leaves after the word cancer is brought forward because if we aren’t worrying about cancer being the killer it is the endlessly unpleasant side effects that creep up & take everyone by surprise.
Every week since his diagnosis Dylan has had a full blood count, at the beginning they were more frequent because his blood tells us a lot about what is going on inside his body. Since he has had his Hickman line replaced with a port he now has blood drawn from his thumb every Tuesday & we get given the results every Wednesday.
This week Dylan has been neutropenic which means he has no immune system. A normal neutrophil count ranges from around 2.5 – 6.5. Neutrophils are a type of white blood cell & are part of the body’s immune system & help fight infection therefore without neutrophils the risk of infection is very high. Dylan’s blood results came back with a neutrophil count of 0.2, this is classed as severe neutropenia & as such he is not allowed to take any of his daily oral chemo meds or go to school until his count increases. Neutropenia is common after receiving chemotherapy because the cancer fighting drugs work by killing fast growing cells in the body; both good cells and bad. Chemotherapy drugs kill cancer cells as well as healthy white blood cells.
There have been points through this journey where Dylan’s neutrophil count has been zero & some of his treatment had to be postponed until his blood count improved. As well as checking his neutrophil levels, they also look at his haemoglobin count, white blood cells, platelets, lymphocytes & monocytes. When he was first diagnosed his platelets count was normal, within two weeks his platelets had rocketed to over twice the normal range causing him to have secondary thrombocytosis brought on by low haemoglobin levels.
Two months into his initial treatment plan Dylan was neutropenic for ten weeks on the trot, he was on antiviral medication for four of those weeks & within the space of one week he needed three blood transfusions & two platelets transfusions. He had to take tranexamic acid (a medication used to treat excessive blood loss) for five days because he lost a tooth & the gap just would not stop bleeding hence the need for a platelets transfusion to help his blood clot. He was also covered in bruises & a rash which are both signs of a low platelet count.
At times it felt like a never ending cycle of hospital stays for everything except rather ironically, cancer. All we could do was sit & wait for his blood count to recover.
Looking after a child with cancer with severe neutropenia is extremely limiting. Simple things like going to the cinema, the supermarket, other people’s houses or having visitors are not an option; it is very isolating.
We have to be careful who we come into contact with as just a simple cold could put Dylan in serious danger.
We were told by the hospital how important it was to keep our home as clean as possible & so our house became as close to a germ free zone as we could manage; we had every antibacterial product known to man. Two months into his treatment Dylan had lost most of his hair, had a pale grey complexion, struggled to walk & had absolutely no energy. His immune system had completely disappeared, we were housebound & cabin fever became an actual thing, not so much for Dylan – he was so ill & weak that he could not have gone out even if he had wanted to.
However, I found the inability to leave the house at any given moment very difficult; one of the first things I had to learn immediately after Dylan’s diagnosis was that time was no longer my own & freedom no longer existed.
When we were first allowed home from the hospital we were handed piles of information about all sorts of things to look out for; a lot of the booklets we were given were about neutropenia, the majority of which were about food safety. A lot of it is common sense in terms of food hygiene but the list of foods that have to be avoided is endless. If you think about every food that a pregnant woman is advised to avoid & then add on some extras that should give you some idea: ready cooked hot supermarket chicken, smoked meats, raw unpeeled fruit, bruised fruit, over-ripe fruit, salad from salad bars in supermarkets & restaurants, bottled mineral water, filtered water, uncooked dried fruit or nuts, freshly squeezed fruit or vegetable juice, fresh herbs or spices, probiotics, takeaways…it goes on.
Once his maintenance treatment ends in April 2020 Dylan will have to have all of his childhood vaccinations again as they have basically been wiped from his system. Anytime he comes into contact or has been in the same area as someone with an illness like chicken pox, flu, shingles etc he immediately has to go on a two week course of precautionary antiviral medication in the hope that he is unaffected by anything; he is also put into isolation during any hospital visits to avoid spreading potential illnesses on the ward.
Fortunately since starting his maintenance plan in July 2017 Dylan has only been neutropenic six times & each time with a break or reduction in his meds his neutrophils have risen within a week. His platelets are now consistently below the normal range but thankfully have not been low enough for him to have a transfusion recently.
It all sounds very complicated & for a while I really struggled to get my head around all the numbers but now it is almost like my second language.
Cancer is a bit like being on a tiny island in a massive ocean where the freedom of time, choice & making plans is no longer viable. It is slightly more inhabitable when the tide is out & very occasionally you pluck up the courage to venture to the water’s edge. However, without any warning the smallest thing can cause a tidal wave which drags you back inland. On the way you try to cling onto whatever you can hoping that you don’t get swept away as the waves very slowly head back out into the ocean.