Amelia's Story

Amelia turned 13, she was a happy, active, fit child. In October half term, Amelia fell off a horse over a jump. It wasn't a terrible fall but hard enough. Anyway, she just didn't recover from that fall. The next day she was stiff and sore but 'ok' however pulled up quickly crying in her lesson as her back hurt so much.

She rested and took some time off riding, The owners told me she didn't seem right and was still seeming in pain.

She went back to school and other activities but she was so tired and pale and still limping. I had her checked by an osteopath/physio but they couldn't see anything of concern.

She was by now getting breathless at the slightest exertion. I finally said have the day off school and I'll take you to the doctors, she could hardly walk there and I was starting to get really worried. Anyway the GP suggested a blood test but thought it was probably mental health so we went home. It was a Friday and the earliest day I could get a blood test was Monday.

Well, that night she woke up in the early hours being sick. I noticed a huge non blanching rash across her shoulders, chest and back and took her to A&E. We arrived at 2am and by 8am they'd taken me into a room to say it was leukemia.

It was such a shock, I just couldn't take it all in. We then went into survival mode really. Amelia was very sick, she was kept in on drips and blood and platelet transfusions over the weekend. It was a whirlwind of needles, tests, medicine and worry. I had to tell her Dad over the phone from a hospital corridor but nothing was as bad as telling Amelia herself. We were upfront from the start but it was awful. She knew what cancer meant as sadly her Grandad and Aunty had died from cancer in the few years before so she was terrified.

After a weekend in our local hospital Amelia and I went by ambulance blue lights to St Georges in London where we stayed for another two weeks. She then started on the chemotherapy, only 5 days after arriving in A&E.

It went ok for a couple of days but then she started to act strangley. This got worse until she had full blown psychosis. It was terrifying. She didn't know who anyone was, she was harming herself, she was desperately distressed. It really was hell. It took days to resolve as they doctors were unsure if it was a drug reaction or a neurological reaction to the chemo injected into her spinal fluid.

Thankfully it was a drug reaction. When she came back to herself she was so weak that even holding cutlerly was heavy. She couldn't get out of bed to sit in a chair, her hair was falling out by now. It was all just such a shock.

Thankfully from there on things improved. There's been other hurdles along the way, shes had dramatic changes in weight, hairloss, strength issues, treatment delays where bloods haven't recovered and almost the whole of year 8 off school. But now, 9 months later she has almost finished active treatment. She'll have another 15 months or so of maintenance chemo to try and prevent recurrence but we hope she can get back to school part time and start to feel more normal again.

Its been an unbelievable time, I'm not sure how much I've really processed it yet. I'm also aware that out of families in this situation, we are one of the lucky ones where we can be hopeful for her future.
Its been really tough on her siblings too, they've had to cope with having a parent away at hospital a lot, with the worry and uncertainty and the huge impact on their lives and what we can do as a family.

We are really grateful to the Ben Saunders Foundation for giving us this break so we can get away together and enjoy some time away from home, have fun and relax.