Hello there, I’ve been signed up a while here but never posted before. Just wanted to get some people’s experiences and thoughts on life post treatment and how things are for you and your child and family life?
A bit of my background… I have twin boys who are 5 now and in Reception. My son Fin was diagnosed with infant ALL at two months old in December 2018. He had standard treatment with chemo for 6 months until it stopped working. He then had a trial immunotherapy drug for a month which put him into the right place for a stem cell transplant at 10 months old. The treatment worked and we went home, living with a few minor complications for a while. But after 16 months, when he was 2 years old, he relapsed. So in the winter of 2020 he had more chemo and CAR T therapy. This worked, amazingly, and he is now 3 years post treatment. He does however, live with a condition from this treatment (B Cell aplasia) and his immune system is not fully functioning. He cannot have immunisations and has IVIG every 6 weeks to help protect him from viruses. I stayed off work for a long time and recently decided to go back 2 days a week this September just gone (primary school teacher), thinking all would be ok now he was at school.
Since starting school however, Fin has had to be off school so much due to constant spreading of viruses and infections in his class. Chicken pox, flu, scarlet fever, etc. I’ve made the decision to leave my job as I need to be there to bring him home from school if there’s something he needs to be isolated from. I have no other childcare and husband works full time and is our main bread winner. Thankfully we get DLA for Fin as he has other conditions from his treatment too and I will able to claim carers allowance for a while to help financially. I just find the constant fear and stress of Fin catching viruses really difficult to cope with. And now coming to the realisation that I can’t work, as every week there’s some new risk to his health that I need to be there for to bring him home from school. His school office are on the phone to me all the time letting us know of confirmed viruses going round the school. Not to mention that any time he gets a temperature we have to go to his treatment hospital an hour away to make sure he’s taken care of and can fight off whatever bug he has caught with the right medication.
So just wondering what are other people’s experiences and is there anyone else in a similar boat? Anyone who’s child is still living with complications/conditions years post treatment and how you manage it? It all feels very isolating as i don’t know other families in this situation. We were isolated so much in 2020 that we barely spoke to anyone. And families we did know from the wards sadly lost their child during treatment.
