I can’t believe I am writing in this forum, I don’t know about anyone else but I feel like i’m having an out of body experience and I really struggle to say out loud ‘my baby has cancer’ - even typing it out now feels surreal, like it shouldn’t be happening and I accept it is, but it feels difficult.
My daughter began with a small blood shot corner of the eye, really nothing to write home about and it wasn’t causing her any pain. The optician and GP both wrote it off as something very common and benign, that should clear up. However instead of getting better, it got worse and her eye changed shape and Mother’s instinct told me something was very wrong, but I really had no clue how wrong.
We were seen in A&E who made a referral to eye clinic, at first the tests plodded along without issue until they did an ultrasound and pictures of the back of the eye, then all hell broke loose, about 8 consultants came in and an urgent MRI was ordered. I am a nurse myself so I told myself they were just being thorough and crossing T and dotting I. However the MRI scan showed a tumour, they suspected it was a rhabdomyosarcoma and a biopsy was taken but we are still without a formal diagnosis - they have ruled rhabdo out and now she falls under the category of ‘non-rhabdo sarcoma’ which is essentially an umberella term for ‘we don’t know what it is’.
So far we’ve had multiple MRI and CT scans and it hasn’t spread but due to her age all of these have been under general anaesthetic and it’s been so distressing for us putting her through these tests. She had surgery almost a week ago to remove the tumour but without a formal diagnosis we don’t know the next steps, they’ve told us these types of tumours don’t usually respond to chemo so there’s still a high chance they will have to remove her eye, muscle and basically all the contents of the cavity to give her the best chance of it not coming back.
I guess i’m here to see if I can connect with other parents who may have found themselves in a similar boat as it’s so rare, i’m struggling to get any support. I think because our life for 2 months has been back and forth to hospital, that now whilst we wait it’s really hitting me. I’m scared, i’m worried it will ‘pop up’ somewhere else in her body, i’m scared for her future and will we always have the dark cloud of cancer looming over us? We also have an 8 year old and even though we haven’t told him exactly what’s going on, he isn’t daft. He has been throwing up for a few weeks and I don’t know if it’s anxiety but then my anxiety has taken me to dark places, like what if he is this unwell too?
I wanted to know how long other people waited for their diagnosis? I never imagined 7 weeks after her biopsy we would still be waiting. I just feel so emotional and unsure about everything.
Thanks for reading, any advice, support, words would be appreciated
