The Oldfield Family
Adrian & Lynn from Stoke-on-Trent know what it is like for your child to need a Bone Marrow Transplant. Here they tell us about their experience of Royal Manchester Children’s Hospital.
In early 2005 after previous, undiagnosed fevers and illnessesour 16 month-old-daughter Eleanor fell ill with more sinister meningitis-type symptoms. We took her to our local hospital in Stoke where she underwent tests; we couldn’t however get a diagnosis. Over the next few hours Eleanor developed new symptoms including a shake of her arms and head, but all of the tests she had kept coming back clear. Her consultant did a lumbar puncture and told us that she had fighter cells in her spinal fluid. We thought that was good news; it wasn’t.
He immediately referred us to the neurological department at the children’s hospital in Manchester. We did not realise at this time that the problem was with Eleanor’s blood and not her brain.
Eleanor was getting worse, we arrived at Manchester and they immediately started running tests. She was then moved to High Dependency as she had started to have seizures and was losing her vision; lesions had started to appear at the bottom of her brain. At this point a consultant by the name of Rob Wynn came to see us and asked if he could take a bone marrow sample via a lumbar puncture. We knew it had to be done to try to find out what was wrong with our precious little girl.
The following day we were given the devastating news that Eleanor had a condition known as HLH or to give it the full name Haemophagocytic Lymphohistocytosis. This meant that her t-cells (a type of ‘fighter’ white blood cell) were faulty and when she had an infection or virus her immune system went out of control as she tried to fight the infection but couldn’t. The condition is incredibly difficult to diagnose.
Rob told us he needed to switch off her faulty immune system with strong chemotherapy and that her only chance of survival would be a Bone Marrow Transplant. Unfortunately, by this time Eleanor had suffered 90% brain damage due to the HLHand devastatingly we lost our little girl before she could have the transplant.
In August 2007, we were delighted when our second daughter Phoebe was born. Phoebe didn’t seem to get as ill as Eleanor but when she was 14-months-old we received a devastating call from Professor Wynn telling us that Phoebe too had HLH.
The devastation hit us again – unless she had a bone marrow transplant she would die. We knew from Eleanor that HLH is always fatal without treatment, but on the positive side at least this time we knew what it was and what we faced.
In December 2008, Phoebe was admitted to the Bone Marrow Transplant Unit (BMTU) spending time in isolation and being fed by an NG tube. Following the transplant, we were discharged as initially all seemed ok but then at her regular out-patient visits it became clear that the transplant wasn’t holding and was starting to fail.
One July Monday morning in 2010, Phoebe walked into our bedroom in a particularly bad way; it was like she was punch drunk. We took her to our local hospital as one minute she was conscious, then she’d be completely vacant.
I texted Rob at 8.15am to tell him the news, we were blue-lighted straight to Royal Manchester Children’s Hospital. Just like Eleanor, Phoebe started to have mini seizures and her eyes were rolling. She was given steroids and chemotherapy into her cerebral spinal fluid via a lumbar puncture to help switch off her immune system. The injection into her spine was like a miracle; we could see she was coming back but we also knew the reality was she needed a second transplant.
When Phoebe was well enough she was once again admitted to BMTU and spent many weeks in isolation, with limited visitors to avoid infection and to give the transplant the best chance of working. We watched our daughter go through some really difficult times. You sit next to your child and you watch them battling, you feel their pain; you wish it was you sat in the hospital bed so they can be spared. You also know there is no option other than for your child to go through this to save their life. This is when your child needs you most; to leave them would be devastating.
We were given the great news that Phoebe’s second transplant had held and in August 2016 we celebrated her ninth birthday. We have colossal respect for the specialist teams involved, particularly Rob Wynn, as they gave us back our little girl.
She is 100% healthy and now has a full life expectancy – the only news we ever wanted to hear from the day she was born.