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Harry's Story

Harry and his family visited the Lodge from April 3rd.

"Harry first started to show symptoms early last year when he was suffering with bouts of nausea and some other symptoms which at the time seemed to not make sense but now we realise this all added up to the bigger picture of what was wrong with him. The Dr prescribed him some medication to help settle his stomach which seemed to work for a while. We thought Harry was trying to get out of going to school and that maybe he was being bullied, we kept asking if there was something going on.

By early May he was being sick in first thing in the mornings and we contacted the Dr's again after the bank holiday weekend. I had to take a urine sample in as they thought it could be diabetes. The next day I had to take him in to see a Dr and she said she wanted bloods taken that week and we were booked in on the Friday morning. By Friday evening Harry was admitted to Bath RUH and we were told they feared Harry had Leukaemia and he would need a Bone Marrow aspiration.

After his bone marrow aspiration and a bone trephine and many other tests over the weekend we were moved across to Bristol Children's hospital where we stayed until the Thursday. They diagnosed Harry with Myelodysplastic syndrome (MDS) and the treatment required for this would be a bone marrow transplant. In the meantime we were discharged with weekly visits to Bath for tests and bloods transfusions as needed. By early June we finally got the results back from the bone trephine and Tim and I were called to go and meet with the Dr's in Bristol.

Harry's diagnosis changed to AML. He required 4 rounds of intensive chemotherapy and would need to stay in for around 4 to 5 weeks for each round with a short spell home inbetween treatment. Staying in hospital for such long stretches was hard on us all. Harry's older brother Tom is studying for his A Levels and with Tim being self employed it meant he needed to work so I stayed in with Harry in the week and Tim mostly just the weekends. We were given a room at CLIC annexe to help us have time as a family and if Harry was well enough we could spend time there cooking a decent meal.

Luckily we managed to celebrate Tom's 18th Birthday in Oct at home between rounds 3 and 4 of chemo. Unfortunately Harry had to celebrate his 13th birthday in hospital although we managed to get him to the CLIC annexe to celebrate with us and his Grandparents. That evening Harry started to complain of a heavy chest and he came down with a chest infection.

After another infection and temperature spikes the night before he was supposed to go home we spent early Dec in the hospital with Harry feeling very poorly. We finally got the go ahead to go home on 13th December, 6 months after his treatment had started.
Harry is now in remission and doing great, he is back in school full time. His prognosis is good and the hospital are happy with him.

We are really grateful to Ben Saunders Foundation letting us have a break at Ben's Retreat. With Harry's treatment so vigorous there wasn't really much opportunity for us to have a break away."

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