A "devastating diagnosis": Ollie's story
June 13, 2023
Ollie was diagnosed with acute myeloid leukaemia (AML) in May 2022, at the age of just five. Since then, he has been on a very difficult journey, which included a complicated recovery following a bone marrow transplant. Ollie’s treatment and subsequent recovery required a prolonged admission to The Royal Marsden Hospital in Sutton, as well as an extensive stay on the Paediatric Intensive Care Unit (PICU) at St Georges Hospital in Tooting.
Along the way, Ollie’s family were supported by several charities, including Ronald McDonald House Charities UK. To help ‘repay’ these charities, Ollie’s dad Terry, along with two fellow army veterans, is taking on the gruelling Nijmegen Four-day Marches in July 2023.
Guest blogger: Terry
Around Easter time last year, we started to notice that Ollie was getting a lot of bruises, especially on his legs. He’s always been a very active child, so we didn’t worry too much at first, but over time he was getting more and more of them. I took him to the GP surgery, where he was seen by a nurse, and we were told to monitor him and go back in a couple of weeks’ time.
I wasn’t happy with this so pushed for blood tests, which were scheduled for the following week. Unfortunately, they were cancelled due to staff illness. Again, I was insistent that the tests went ahead as soon as possible, and managed to get him booked into our local walk-in centre for later that afternoon.
Around 7pm that evening, we got a phone call with the results, and we were asked to go straight to A&E at our local hospital, The William Harvey Hospital in Willesborough. When we got there, Ollie was taken to a ward and that’s when we were told the devastating diagnosis.
We stayed at the William Harvey for a couple of days before Ollie was transferred to St George’s Hospital in South London. It was at that point that I realised just how brave our little boy was. I’ve never met a more courageous person. Throughout his journey, he’s taken everything in his stride and just accepted everything. He’s amazing.
We got to St George’s on the evening of 12 May and the following day, he had his Hickman lines put in, in preparation for chemotherapy. His chemo started on 14 May and two days later, Ollie was transferred to The Royal Marsden Hospital, where most of his care was to take place.
Ollie had his first cycle of treatment, which lasted 10 days. He recovered quite well whilst he was in the Royal Marsden hospital, so he was allowed home for a short while before starting his second cycle at the end of June. At that point it was explained to us that Ollie would need a bone marrow transplant and we worried terribly about finding a donor. Thankfully, three suitable donors were found, which was a huge relief.
Ollie took longer to recover from the second round of chemo, and the transplant had to be delayed by two weeks. The upside was that we could have him home for a couple more weeks, which coincided with his sixth birthday.
His transplant finally went ahead on 1 September, and all went well. However, around two weeks later, he started getting poorly. That was when he was transferred to St George’s, to be closer to the PICU. Ollie contracted cytomegalovirus (CMV), which is related to the herpes virus that causes cold sores and chickenpox. He was put on antiviral medication, which dealt with the CMV but caused damage to his kidneys. There was little let-up for poor Ollie, as he then contracted veno-occlusive disease (VOD), which affects the liver, and caused him to swell up due to fluid retention. The drug given to Ollie to treat the VOD wasn’t even available five years ago and we couldn’t be more grateful for the advances in medicine which mean that our boy is still with us today.
Ollie was in St George’s for four months in total. He’d been there for a few nights when we got a referral to stay at Ronald McDonald House Tooting, just a stone’s throw from the ward where Ollie was being treated. I mostly stayed there on my own, and Aga continued to stay with Ollie in his hospital room. He was bedridden for a good six to eight weeks. Eventually, as Ollie started to get a little bit better and was able to walk again, we would take him over to the House with us for a few hours during the day.
Ollie learnt how to walk again in the Ronald McDonald House. It provided a real ‘home away from home’, where Ollie could both relax and begin to exercise and rebuild his strength, away from the clinical environment of the ward. We believe it really helped to speed up his recovery.
I never felt alone in the House. I would get back at around 9 pm each night and I’d sit and have a tea and a chat with other parents. We kept each other going. It was a nice supportive, family atmosphere. The staff, too, were incredible; always so warm, empathetic, and welcoming.
Even though Aga didn’t stay at the House overnight, she was able to make good use of the fantastic facilities, including the laundry and the communal kitchen. Being able to do ‘normal’ things like our washing and cooking a decent meal, really helped.
What was so difficult to comprehend as parents, was that in July, Ollie was said to be in remission. He didn’t have leukaemia anymore! But his complicated recovery continued due to the much-needed bone marrow transplant, which also brought with it a bout of graft versus host disease (GvHD), which meant that the donated marrow was reacting against him. Once again, he fought through it, and by mid-December he was well enough to be transferred back to the Royal Marsden, where he spent another two weeks. Leaving St George’s was tough. Even though it marked an important milestone in Ollie’s recovery, it also meant leaving the amazing doctors and nurses who’d saved his life, and that was difficult. Saying goodbye to the Ronald McDonald House was also hard. We once again found ourselves spending hundreds of pounds on fuel, traveling back and forth between home and the Marsden.
Thankfully, on 24 December 2022 Ollie was allowed to come home, just in time for Christmas. Then on 12 January, he was fully discharged from hospital.
As we begin to see light at the end of the tunnel for Ollie, I’ve been reflecting on the terrific charities, which have helped us along the way. Without them, I don’t know how families would cope, as childhood cancer destroys all aspects of family life. To help repay Young Lives vs Cancer, EMMA’S BUBBLE TRUST and Ronald McDonald House Charities UK, I, along with two fellow Royal Electrical and Mechanical Engineers (REME) veterans, have signed up to complete the Four-Day Marches Nijmegen 2023 in Holland, to raise money, so that these charities can continue their tremendous support for others. I’ve set a fundraising target of £25,000 and am determined to reach it.
Ollie currently seems to be doing well in himself. He went back to school last month; his first days since his diagnosis in May last year and he absolutely loved being back. He is still receiving treatment from the Royal Marsden Hospital and is very likely to need a further procedure toward the end of July. but fingers crossed that everything continues to go in the right direction.