14-year-old Theo had a stem cell transplant in 2023 after being diagnosed with aplastic anaemia. Two years on from his diagnosis, his mum, Ellie, reflects on their journey and how it's inspired them to help others.
I’ll never forget being woken up by a call at 2am and a doctor telling me, ‘You need to take Theo straight to A&E’.
Our son Theo, 12 at the time, had been getting lots of strange bruises and our GP had taken a blood sample the day before. The tests showed that his blood counts were dangerously low. At the hospital, they explained that he had something called ITP and it would get better after a couple of months.
We went sent home, but over the next few days and weeks his bruising was getting so much worse. He started to get nosebleeds. He got blood blisters in his cheeks, and he couldn't eat. There was a rash all over him. I kept taking him back to A&E and they just kept saying, ‘It's fine, it’s ITP, it will get better’. Until one day, they wanted him to stay in for a platelet transfusion. It bumped his platelets up a little bit but then his body destroyed them the same day. And then that's when they thought, ‘This isn't ITP’.
A really scary wait
He got transferred to London and had a bone marrow biopsy. He had a PICC line fitted in his arm, and I think that's when I realised: this is going to be long term. He had another blood transfusion because his haemoglobin had started dropping as well, and they said he was now neutropenic. So, he couldn't leave the hospital room. All three of his blood counts had crashed to really low levels. And then they diagnosed him with severe aplastic anaemia. The doctor, I will never forget him because he was so kind and even though it was scary, it was a relief, because finally they knew what it is and there was a plan. And that's when they asked, ‘has he got siblings?’
They explained that he needed a bone marrow transplant, and that there's only a one in four chance of a sibling being a match. But in my head, I was like, ‘well, of course the girls will match him. They're so similar. They look similar. He’s got two chances. One of them will be a match’. So, when it came back that they weren't a match, it was devastating. We had to hope that there was a match on the register and also that that person says yes. That was the only way Theo was going to get better, so it was very scary.
In the meantime, Theo was transfusion dependent. That's what was keeping him alive. And he kept getting infections because he was neutropenic. It becomes very, very serious. We needed to get this bone marrow transplant done soon but everything’s taking time, and you just have to be patient. It was a really scary time.
When we found out they’d confirmed a donor and his transplant was going ahead, I cried. It was such a relief. I just couldn't get over that this stranger in another country had, first of all, gone on the list, which is just amazing that people do that, and second of all, she’d said yes. I just couldn't get over it. The gratitude for this unknown stranger is just through the roof. That never goes. If I talk about it with someone, I still get this big feeling of love and gratitude for this person, and I don't even know her name.
Transplant day
Theo's transplant was on the 15th of November and I just couldn't get her out of my head. When Dr. Sanjay came to tell us, ‘The cells are here, they're in our lab’, I was like, ‘oh my God, this is really happening’. Donors are true heroes, absolute heroes. She's done that for a little boy that she doesn't know. It's just incredible. We’re beyond grateful to our donor, I can't even articulate how grateful we are. We really hope to meet her one day.
On transplant day we got Theo a present and we got him a balloon to celebrate, and I decorated the room. There was an entertainer on the ward, and she just happened to come in while we were waiting for the cells to be delivered. She put a little disco ball over Theo's head and started playing his favourite song. So, we were having a party and then the cells got wheeled in.
They hooked Theo up and I videoed the cells coming down from the bag and saw that first drop going into his Hickman line. It took about 20 minutes and that was it. We sat back and he played on his PlayStation. And it was done. Then you just have to wait for it to work.
It did take a little while. It took three weeks and luckily, he was then allowed out of his isolation room in time for his birthday on the 8th December. He went and met family in the entrance lobby. He ran straight up to my mum and hugged her. She thought she'd have to come and speak to him through the window, so she just burst into tears.
With his recovery, I feel we have been fortunate compared to some people. There were niggles, but after a few months we could finally start going out again, he could go back to school, see his friends. We celebrated Theo’s first transplant anniversary and life has been gradually getting back to normal. We got to celebrate Christmas with all our family, after being in isolation the Christmas before.
Supporting Anthony Nolan
Last year Theo’s dad and cousin ran the London Marathon for Anthony Nolan. We just felt so much gratitude that Anthony Nolan and the register exists. Theo wouldn’t be here if it wasn't for Anthony Nolan doing all this - all the lab testing and the matching and the searching, even down to their volunteer courier who’s gone over to Germany and flown those cells back. It all costs money. So, we want to give back and also spread awareness.
Until we needed them, I was guilty of being that person who thought that, when people need bone marrow donations, they have it from a family member. So, I set up his Super Theo page to share updates with friends and family, and also to spread awareness. I saw that other families had set up Instagram pages and I found them particularly helpful myself. I know no one can tell you exactly what's going to happen, because everyone’s experience is different, but I found them incredibly reassuring. It was that feeling of, ‘okay, this is horrific, but there's light at the end of the tunnel and there's hope’. So that's why I set up the Super Theo page. For awareness, for reassurance and to update people that knew him. It's not an easy journey, but it's just about giving that hope.
By sharing Theo’s story, we've signed lots of people up to the register. I also made ‘Super Theo’ hoodies to raise money for their marathon fundraising and then on the back, it says ‘Are you age 16 to 30? Please sign up to donate your stem cells’ with the website embroidered on the back. I still wear it all the time and I hope people read it.
I just hope Theo can now go and enjoy his life, never having to worry about this again, because he's cured. He's definitely proud of himself and he sees his transplant as a positive experience - that being in hospital was him getting better. I think I will always worry about Theo, but I’m definitely feeling a lot more positive and talking more about the future.
We’re beyond grateful to our donor, I can't even articulate how grateful we are. We really hope to meet her one day. I can't imagine what it would be like if we were to be told that there was no donor. The reason Theo is here is because of Anthony Nolan, and his donor, and blood donors, and hospitals, and we’ll do whatever we can to raise awareness.