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 and what happened after the transplant took place (read part 1 of Zac's story here)
Zac left the ward on the 31st October (Halloween), which was fantastic. We were so excited to be home.
I can’t deny, though, how incredibly hard those first months at home were, and looking back now I have no idea how we coped.
Zac had such huge needs. His Hickman line and gastro-tube were still fitted, and there were around eight different medicines to be given in different quantities, four times a day. He was used to getting so much attention, and the other children had been deprived of it.
He was also still in isolation and couldn’t go to any public place or mix with other children, unless they were fully well. All of this in the ill season made life very difficult. There were some low points at Christmas and New Year, when it was clear Zac was really quite depressed. Being shut away for so long, away from his friends, losing his hair. What a lot for an eight-year-old boy to go through!
A difficult recovery
Various blips happened; we had at least five different stays at the Royal Surrey, when he had got unwell and needed to be on IV antibiotics.
We also had him struggling to breathe at one point. I think it was some kind of panic attack, but it was incredibly scary and the one and only time we’ve called an ambulance.
In January, I felt I needed a break from Zac, and decided to go back to work three days a week. I ended up missing quite a few days due to various hospital visits, but working again felt really good. I felt able to be a better parent and carer for Zac, and he got to enjoy being with his dad more often.
His return to school was a little rocky, but he ended up going back pretty much full-time for the summer term. He loved being there, and although he was obviously behind on his work, he is now fast catching up, and doing really well.
Friendships had changed a little, but those really good friends who were there for him throughout the transplant – calling him, sending him cards and letters – are still his best buddies.
Zac reunited with his brother and sister home from hospital.
Something to look forward to
When we were in hospital, we needed to have good things to look forward to, and we’ve had a few amazing experiences in the last few months.
A family day at Legoland, all paid for by the wonderful charity Rays of Sunshine, with fast passes! Tickets to the Rays of Sunshine concert at the Royal Albert Hall, sitting four rows from the stage, seeing Little Mix, Collabro and Pixie Lott, amongst others.
Zac at Legoland
Zac’s wish with the charity had been to meet Joey Essex, but it hadn’t been very easy to arrange, so I took the children along to a book signing and we all met him, which was incredible. His new wish is hopefully to go to Disneyland Florida and we are crossing everything that it is going to be possible. It is looking good and we are very excited!
In a few days we are going to stay in a huge house by the sea in Bude, Cornwall with all his grandparents, uncles, aunties and cousins. He’ll be able to go swimming for the first time, which will be so exciting.
'It's time to give back a little'
There are still lots of medicines to take and appointments to juggle, and we are all feeling the effects of what we’ve been through. But life is just so much better now, and it’s amazing to be able to have it back, appreciate it, and make plans. I’m really looking forward to us all starting a new school afresh in September, with everything normal and Zac so well and happy.
Next year I’ll be doing lots of running, including two half marathons and the London Marathon in April (hopefully for Anthony Nolan!).
It’s time to give back a little, after everything we’ve been given.
Read part 1 of Zac's story here
We’d like to thank Rebecca and her family for sharing their incredible story. If your child needs a bone marrow or stem cell transplant, our patient team are here for you. You can email us at patientinfo@anthonynolan.org, or call us on 0303 303 0303. You can also read our 'Parents Guide to Transplant' here on our website.