Practical support

Jason Westfallen is four years old. He has an infectious laugh, likes Spiderman and lives in Slough with his sister Shannon aged 7, Mum Donna and grandparents.

Five months ago he was diagnosed with Myeloid Dysplasia and Monosomy 7 – a precursor to acute myeloid leukaemia. Here Donna tells their story:

Jason was diagnosed with immune deficiency in 2006 but his response to treatment prompted further tests and the diagnosis of the extremely rare condition which was symptomatic
of leukaemia.

Donna said: “I was gutted. When they called us in, it was the way the doctor was with us, I knew there was something not right. I was up at the hospital on my own, so my Mum had to come up.” Jason needed a bone marrow transplant, but tests showed Donna, Shannon and Jason’s Dad were not suitable donors, and they had to rely on the Anthony Nolan Bone Marrow Trust’s register of volunteer bone marrow donors to find a suitable match.

Donna said: “They thought they had found a donor to begin with and then they said it was not good enough. On November 22nd we went to Bristol Children’s Hospital for three days, that’s when they confirmed they had found a match. On Tuesday 12th December we went back down to Bristol. He started chemotherapy on the Thursday and then the bone marrow transplant was on December 20th.

We were there a day under six weeks – not that I was counting!” Donna and Jason spent Christmas in isolation at Bristol, leaving Shannon at home in Slough with her grandparents. Due to therisk of infection they were only allowed three adult visitors and initially even they could not visit because they all had colds.

Donna said: “I wasn’t allowed to eat in Jason’s room and Jason didn’t want me to leave him so during the week I survived on drinks. It wasn’t as boring as I thought it was going to be because there was always something he needed; I had to keep him entertained which kept me entertained. I didn’t know which day it was or anything. I used to look forward to going out of the room to the loo!”

“My Mum and Dad came up most weekends with Shannon. She wasn’t allowed on the ward. She had a little chair outside the ward door where she waited for me to come out, after I’d got changed, to see her. It was difficult. It was really hard for her because she didn’t see Jason for the six weeks, also because it was Christmas and she didn’t have us there.”

When Jason and Shannon were allowed to see each other Donna said: “It was like something out of a movie – they ran together with
open arms.”

“Christmas felt like a normal day to me. Father Christmas came in to see Jason in the morning and woke him up; Jason opened his presents and then slept for most of the day because he didn’t feel well.”

Following the transplant Jason had a complication called graft-versus-host disease where the new cells fought Jason’s own tissues. Consequently his condition is regularly monitored.

Life for Jason’s family has changed dramatically in the past six months and is now governed by doing everything possible to make Jason better. He is currently unable to mix with lots of people due to the continued risk
of infection.

Donna said: “We can’t go out and do things together. We’ve got birthdays coming up – Jason’s is this month and Shannon’s is in April and we can’t have birthday parties. We are thinking of having a bouncy castle for them later in the summer.”

Donna and Jason travel to Oxford’s John Radcliffe Hospital twice a week for blood tests and to Bristol Children’s Hospital once a month. A community nurse visits everyday to administer antibiotics and sometimes take blood.

Donna said: “Everyday around 9am he has all his medicines; on average he has five or six a day, at weekends sometimes more. Jason is not allowed to go out until April so we are watching lots of DVDs at the moment. Lately he’s been saying he misses his friends at school.”

Waiting to find a bone marrow donor and being in isolation Donna said were particularly difficult for the family. But returning home after having the support of nurses day and night for six weeks if something went wrong, and waiting to see if the transplant has worked are a continual worry.

She said: “Just before we left Bristol we were told he would more than likely have to have a second transplant. We are hoping that he doesn’t. It’s just a guessing game at the moment.”