Hello,
I just wanted to reach out to see if any other parents wanted to talk or offer advice from their own journeys?
Our story is as follows; I noticed my daughter had a blood shot eye at the age of 8/9 months old that appeared literally overnight and made no sense (couldn’t see what she could have done to cause it) I kept an eye and after a week or two, took her to the GP. The GP didn’t seem concerned and told us to continue to wait for improvement, however a week later I could visibly see her eye had changed shape. I was advised to take her to A&E and to be honest A&E were a bit dismissive and sent us away with a referral to ophthalmology. I had to call them and insist on an urgent appointment, which granted they gave us one the following day.
At first, the doctor wasn’t concerned but then he went to ask a consultant to take a look and that’s when things changed. Before I knew it several doctors were in the room and we were told she needed an urgent MRI. This revealed a mass and she was admitted the following day for a biopsy.
Unfortunately they couldn’t figure out what the tumour was and so we had an 8 week wait whilst it was viewed by several hospitals before they finally diagnosed her with an alveolar soft tissue sarcoma. (ASPS) - it’s very rare with only 6 diagnosis per year and even rarer again in a young baby and behind the eye. Several back and forth about treatment was made, chemo doesn’t work on these tumours and radiotherapy would cause her significant damage due to her age so the decision was made to perform surgery to remove her whole eye and the contents of the orbit.
Though this surgery has ultimately saved her life, of course she has been left with no eye and this brings its own challenges (people can be cruel, innocently, awkwardly or obviously) people keep saying how I must feel relieved, how I must feel like a weight has lifted and how I must be so excited about the future. Yes of course, it goes without saying how delighted we are that her treatment so far appears successful but now I am so overwhelmed by what we’ve been through. I keep crying and getting upset, I feel like we had a life before cancer and now a life after cancer, I get tearful when I see pictures of her before all of this happened, I am triggered every time I see the oncology ward or even the A&E I took her to. It’s like I lived in survival mode for so long that now I am starting to feel everything I was excited to feel at diagnosis. I am finding it hard to tell people i’m struggling now as I can tell they just don’t understand why I can’t be happy now she’s had treatment etc… can anyone else relate?
It’s a long wait for NHS therapy and I don’t even know if it’s the right support. Maybe other parents who can help me validate my experience would be more helpful?
Oh sunshine, I'm so very sorry. It's so hard. I hope your son will finish his uni course. It doesn't make anything go away but at least means you have to focus on something else, some of the time. Daughter is managing to work as much as she can at the moment. Chemo side effects are at last subsiding. Her surgery is next week so she will need to take more time off then.
I know what you mean about wanting to scream at other mums when they go on about insignificant problems their children have. I have to tell myself that I might have been doing the same a year ago.
I hope you can persuade your son to speak to someone. Keep posting here, it's so good to talk to people who really do understand. Sending a hug. 
I'm not great at finding things on here either!
Thank you for your message. Daughter has had her surgery. She's very tired and sore but feeling okay. We won't know anything about clear margins (praying hard 
) until we see the surgeon again but it feels like a major hurdle crossed.
How are you doing? Sending love xx
Morning Cherry 2
REALLY good to hear results of surgery. All wins are so important mentally and physically.
I’ve sat here a long time trying to respond to your feelings about the chemo & know exactly what you mean but don’t know how to put it into words…. I’d make a rubbish counsellor wouldn’t I 
You ARE at the bottom of the hill at the moment but slowly you will get to the top. It’s brilliant that there is treatment for her. Looking on is so hard though isn’t it….
How old is your daughter? Sounds like you’ve done a good job as she is coping with your suport?
Do you work? My work has saved me. You never forget but sometimes its nice to have to push it to the back of your head for a while.
My son has booked a trip to Malaga with his good friends whom he has now told about his situation. Stupid as it’s when uni work needs to be submitted but it has slightly given him a goal. He’ll prob
ly get by by the skin of his teeth…. As always
He needs to talk to someone but wont instigate which is a shame.
We have MRI scans every three months. The last one was clear but I was knocked for six & we both pretty much went home to bed….. I think we were drained by the subconscious stress.
Anyway.. I have rambled on… My love and good wishes are with you & your daugter.
Moopants88…I hope you and your daughter are doing well xx
