I had always known the risk of having another child with severe combined immunodeficiency (SCID) after the passing of our first son, Scott, and the discovery that I carried the faulty gene for SCID. When our third son, Rhys, was born, he was tested for and diagnosed with SCID. Within days, we were referred to Great North Children Hospital, Newcastle to start our bone marrow transplant (BMT) journey.

Rhys’s 19-month-old brother, Owen, became Rhys’s donor – the siblings having a similar tissue type. Rhys went on to receive his transplant at the tender age of five weeks, and all was good. Unfortunately, once home from hospital, he contracted cytomegalovirus, which activated his new cells too early, leading to graft-versus-host disease. He had to return to hospital, where he stayed until he was fully recovered. Thankfully, neither Rhys nor Owen remembers the initial BMT journey because they were so young.

Nearly 13 years on and I’m pleased to say that Rhys is thriving. His donor T-cells are functioning well. I give him weekly immunoglobulin infusions at home for passive protection, as he is unable to produce his own antibodies. Once he feels ready, Rhys will be able to do this himself.

Rhys is in Year 8 at high school, living his best life and is a typical teenager, squabbling with his brother, gaming and eating us out of house and home. I wouldn’t have it any other way.

As the BMT journey is a complex one and each journey is unique, with treatment plans tailored to an individual’s situation, I’m aware that what helps one family might not necessarily help another. But I would like to share with you a few tips and insights that I think could be useful based on my own experiences.

Have a routine and structure your day

Spending time in the isolation unit (or the ‘bubble’ as we used to call it) can be an emotional drain, especially during times of intense treatment. Seeing Rhys so vulnerable often left me feeling helpless. I found all concept of time disappeared: all the hours and days tended to roll into one. I also found it quite lonely at times (it’s quiet inside the ‘bubble’).

By introducing a routine of taking regular, short breaks away from the isolation unit, I was able to add some structure and normality to our days, which helped me keep my sanity. I was lucky enough to be able to pop over to a nearby park and take some time out, which also helped me recharge and look after myself.

Pack some hand cream

There is a lot of hand-washing. My hands quickly became extremely dry, cracked and sore, leading to a risk of unwanted infection. Investing in a decent hand cream is essential.

Share your experiences with others on the BMT journey

I was the nominated main carer during our BMT journey and was often on my own while my husband remained at home to run the house and care for Owen. Despite receiving amazing support from family and friends, meeting others who were going through their own BMT journey at the same time as us was a great source of comfort and strength to me. I valued our time chatting about our feelings and experiences while in the family/community room, and connecting with other parents gave me a great sense of solidarity. I formed some strong friendships, which later served as a source of mutual support when we moved to the halfway house before returning home.

Allow extra time for parking and navigating the hospital grounds

When travelling to and from hospital appointments, we often found that the carparks were extremely busy and sometimes full. It’s worth factoring in extra time in case finding a parking space is tricky. Some hospitals may operate a one-in-one-out policy at busy times. We also found that it took longer than anticipated to navigate the hospital grounds to reach Rhys’s ward, as we had to distance ourselves from busy areas and avoid sharing elevators with others to minimise the risk of picking up any infections or viruses. It’s worth factoring in extra time for this too.

Going home after the BMT

I found this one of the most intense parts of the BMT journey. I was, of course, grateful to finally be heading home, but I was petrified. Having spent all those weeks in a protective environment surrounded by excellent specialist care, the prospect of going home and moving away from all that support was a daunting one to say the least. At home, we still had isolation rules in place, and Rhys had a lot of medication that he needed to continue with. Speaking with the BMT team about my worries and concerns was a fantastic help, and they gave me the reassurance and support I needed for a successful transition home and beyond.

Before leaving hospital, we were fortunate enough to stay in a halfway house close by, which gave us the opportunity to adapt and better prepare for our return home. Being honest with family members and setting firm boundaries around visits in those early days at home also helped reduce my anxiety around infection control.

Dealing with post-transplant check-ups

Once we were home following Rhys’s successful transplant, there was still a way to go: lots of medication to administer, phased isolation rules and regular – weekly at first, then less frequent – follow-up checks and blood tests to ensure all was going well.

During those early check-up days, Rhys would sometimes require additional infusions or a slight amendment to his treatment based on what his blood results showed. Some of the infusions he required could only be given slowly over a set number of hours, meaning that there was always a possibility that Rhys may need to be admitted to the ward overnight. Due to the distance between our home and the hospital, I found keeping a basic overnight bag in the car gave me peace of mind and meant we were prepared should Rhys suddenly be admitted. I would recommend this, especially if the distance between your home and the hospital is great.

Posted January 2026.