You can’t pour from an empty cup…

Hi, my name is Jo and my very nearly three-year-old son Oti was diagnosed with acute myeloid leukaemia when he was 17 months old. He had a stem cell transplant in June 2023, is now seven months post-transplant and the difference between his and his older brother’s health feels unnoticeable to me now.

Thinking back to this time last year, as we found that chemo alone wasn’t shifting this disease, a stem cell transplant was confirmed as the treatment pathway. Oti had multiple, unrelated donor matches on the register, putting us into the bracket of ‘unlucky people’ in normal life, but ‘lucky people’ in stem cell donor life.

The toll of isolation

We had previously spent six months living at Addenbrooke’s Hospital (I cannot overstate how incredible the staff of Ward C2 are) for chemo, and we were set for a longer period ahead of us for transplant. I had no idea before Oti’s diagnosis that some oncology treatment plans, including stem cell transplants, require being an inpatient at hospital for months and months at a time – often in an isolated room. The toll it takes is indescribable.

“And are you looking after yourself?” is a beautifully well intended question I was asked almost weekly. A feigned smile hid the torture I felt – my husband and I alternated between Oti and our four-year-old for 18 months, turning down offers of a break from either of them because loneliness felt worse. Most of the parents we met who were also dealing with leukaemia feel a different version of the same thing.

The importance of ‘microcharges’

We decided on a two-pronged approach. First: ‘microcharge’ ourselves – a 20 minute walk, only healthy meals, a shower with shampooing twice! Secondly, re-doing the parents’ rooms at the two hospitals Oti was treated in. These rooms are where parents’ food is stored and prepared whilst we stay with our inpatient children, and is the only ‘living space’ apart from the room your child is in. You see other parents in there, in a room of mismatched furniture, a few tatty autobiographies written a decade ago, leaky fridges, and posters of bald children. We stripped this out and put in new cabinets, furniture, a radio, bookcases full of books and toiletries, white goods. No ‘mentions’ of cancer were allowed: we wanted to create an actual respite from all that was waiting for parents like us on the other side of that door. A real chance for a ‘microcharge’.

Looking forward

Where are we now? We are only four months out of hospital with Oti, but it feels like a lifetime ago. We’re back home, our two boys are together and we’re coming back down to earth – hardly believing any of this has happened, but feeling the physical effects of many months of surging adrenalin. Feeling moments of joy that I couldn’t believe possible before, knowing that ‘everydayness’ has no way of scaring us anymore.

I find giving ‘advice’ difficult as care giving situations can be so different – but I hope I can provide kinship to anyone supporting a loved one about to embark on a stem cell transplant. You will feel lonely, but remember it is also a well-trodden path. Take microcharges when you can, knowing that you can absolutely do it when you have to. One day, you’ll remember how to exhale again. Oh, and a mattress topper and clip-on light for the pull-out bed are a non-negotiable!

A second chance at life

Grateful will never cut it. A total stranger saved our son where we couldn’t, and hundreds of real-life superheroes helped us all along the way. Stem cell transplants are a chance to witness the best of humanity and to see pure magic. It wasn’t only Oti’s life saved that day in June 2023. His parents have been saved too.