Trigger warning: this is a deeply emotional post and talks about my fears of my child dying.
Today is the Dinosaur’s 5th birthday, we have a lot of fun things planned to celebrate. As he’s only just started school he’s finishing at lunchtime so when I pick him up I’m going to take him to Nanny & Grandad’s house for presents from them. When Unicorn finishes school she’s going to meet us there. When Daddy gets home from work there will be presents from us and then we’re going to the other Grandads house for tea and more presents.
Tomorrow, we’re going to Legoland for a Merlin’s Magic Wish. He has a disability access card so we won’t have to stand in queues and he can take a carer and 2 guests with him so we won’t have to split up. A friend raised some money for us to treat the children so we booked a night in the Legoland hotel followed by a second day in the park. It’s a bank holiday on Monday now as well for The Queen’s Funeral so everyone will have time to recover from a busy weekend before going back to school on Tuesday.
The weekend after, he’s having a fancy dress disco birthday party and has invited all his new friends from school.
There’s plenty to celebrate.
Despite all this, I can’t shake the dark feeling of doom looming over me. This time last year, I had a normal, healthy and happy boy. 5 months later he was diagnosed with leukaemia. I’m terrified that this will be his last birthday. There is literally no reason for me to feel like this. Well, obviously there is, he still has leukaemia. What I mean is that he is the lowest risk factor for relapse, his treatment is going according to plan and there is absolutely no reason to think that the leukaemia will take his life. I still can’t shake the feeling that I’m going to lose my baby.
There are a whole load of thoughts swirling around in my mind: what if he picks up an infection at school that he can’t fight; what if he relapses; what if the treatment damages his little body too much; what if the intrathecal chemotherapy (lumbar puncture with chemo into the spinal fluid) causes brain damage; what if it causes paralysis; what if he just doesn’t wake up from a general anaesthetic; what if he develops an allergy to the medicines; what if he never eats again and has to stay tube fed; what if his port gets infected…
There is no real reason for this post other than to just have somewhere to unload some of the mental load to do with childhood cancer.
From talking to other parents in the same storm, the way I’m feeling is entirely normal. Partly down to the fact that we live every single day of our lives in fight or flight mode ready to react to an emergency at the drop of a hat. For us, an emergency constitutes a temperature of 38C, if he hits that it’s straight to the hospital for a minimum stay of 48 hours for IV antibiotics. This is so serious that the school have been told that if they can’t get hold of me in this situation then they must phone for an ambulance straight away. Living your life like that, in a heightened state of stress is bound to cause emotional overspill from time to time.
I find myself saying I’m OK a lot when people ask me how I am or how he’s doing. This Instagram post from Nedra Tawwab sums it up beautifully: (Apart from the last 2, this is what I mean when I say “ok”).