In 2014, Rebecca’s eight-year-old son Zac was diagnosed with ALD (adrenoleukodystrophy); his doctors recommended a stem cell transplant to give him the best possible chance of life.
Thankfully, Anthony Nolan found Zac a match. More than a year on, as she sends her first letter to her son’s donor, Rebecca reflects on her family’s story:
Today I finally sent off the letter to Zac’s donor to say thank you. I felt very bad that it had taken as long as it had, but life had been so hectic and I wanted to write with a clear head and full of positive news that everything was good.
I also had to rewrite it, since I found myself including too much personal info – you feel such emotion and warmth to the person who gave their bone marrow to your child, it’s instinctive to want to tell them everything!
To our wonderful Donor,
I firstly must apologize for how long it has taken us to get this letter to you. It has been on my mind ever since September, but I really wanted to write with positive news, when I felt life had really turned around…
Zac's diagnosis
It was last February that my 8-year-old son Zac was diagnosed with the rare genetic condition ALD (adrenoleukodystrophy), and our world was completely rocked.
It was hard to accept. Zac was well, apart from his Addison’s Disease that had been diagnosed three years earlier. He did not seem like a child with a life-threatening condition, and there had never been anything like this in our families. I was a happy-go-lucky person who saw these things as happening to ‘other people’.
But from that point on, we went on the most frightening rollercoaster ride ever, just holding on for dear life and praying everything would be OK.
We were told the best thing possible was that he could be treated with a bone marrow transplant, but to me that felt like the worst thing in the world. How could we possibly get through that? I literally had no idea. I was still adapting to life after separating from my husband two-and-a-half years earlier, and this felt like a challenge that was just too much.
But then fight or flight set in. As we moved down the line of tests, appointments, and conversations with consultants, somehow things felt easier to manage. There was the disappointment when neither of Zac’s siblings were a match for him, as we knew that was the best-case scenario, but it didn’t take long for the donor records to be searched and then finally to have the best news that a perfect 10/10 match for Zac was found.
At last something was certain and definite. There was a beginning and an end to it all, and we just had to hold on tight and pray we came out the other end.
Luckily for me, I had a friend whose daughter had a stem cell transplant at Great Ormond Street only a couple of years earlier. (She had been in the same class as Zac at infants’ school). She was an incredible support, and her positivity helped me enormously.
'I was in awe of Zac'
One of the most difficult things was knowing what to say to the children – to anyone, in fact – when there were so many uncertainties, and we still had so many questions ourselves. I’ve always believed in being open and honest, and I find it hard to hide my thoughts and feelings, but I literally didn’t know how to tell Zac and the others.
There came a point when not saying anything was worse. Zac sensed that there was something I wasn’t telling him, which made him upset and scared. I tried then to explain, and it was so incredibly hard and upsetting.
He was scared, of course, but he was also incredibly brave, and I was in awe of him from that point onwards.
Zac keeping himself amused in hospital
The doctors were amazing, the way they talked to him. I will never forget the consultant asking Zac if he had any questions, and him replying, ‘So, could I die?’ The (slightly taken aback) consultant answered him so calmly, but not avoiding the question at all. He said, in a lovely Italian accent, which must have helped, ‘I can tell you Zac, we do not expect you to die.’ I felt that was spot on.
Once we were up at Great Ormond Street, the daily routines and the amazing nurses and doctors helped enormously. Zac had so many things to keep him occupied, his friends were great at calling him, and having Sky Sports in the room helped a lot!
Zac with his nurses at Great Ormond St Hospital
I pretty much moved in. His dad and step-mum took care of the other two children during that time, speaking to them on FaceTime and seeing them at the weekends. Zac missed them a lot.
His dad visited every week, and his grandma came regularly to give me time out. That all helped to keep me sane, and ensure I could be the support I needed to be for Zac, who was a true trooper throughout. The nurses all fell for his charms.
Zac in his new Pajamas
He was determined that he was going to get through it all, and be out in the quickest time possible. Cheeky and direct, bossy to the doctors and nurses, always asking questions – he was a great patient.
Transplant Day
Transplant day was very emotional – but also so calm and peaceful.
Beforehand, there was that horrible time where the chemotherapy had really set in and Zac was utterly miserable feeling horrendous. His face looked swollen: he couldn’t speak, eat and or smile.
Making a child really ill in order to make them better doesn’t feel great as a parent. There were times when I doubted everything and thought, ‘Why are we putting him through all this?’
What your heart wants and what your head is telling you do are at such odds. But, of course, we understood – and so did Zac.
Read part 2 of Zac and Rebecca's story here
Read the 'Parent's Guide to Transplant' on our website, and download our free guide here
Visit Rebecca's personal blog at https://beingbeeburston.wordpress.com/