Bobby's story (January-February 2024)
Bonnie shares her family's journey as Bobby undergoes his bone marrow transplant (BMT).
27th February 2024
BOB IS HOME!!!!
Bob managed to do really well through transplant and he was discharged last week. Though it’s very early days and I am actually writing this from a hospital room in Stoke Mandeville as Bob spiked a temperature. As he has a central line in, he has to go to hospital to start 48 hours of antibiotics immediately in case of a line infection. Bob has responded to the antibiotics and is feeling a lot better. He was allowed to pop home for a few hours yesterday.
I want to thank all the nurses, doctors, volunteers, physio and play team at GOSH for getting Bob through his transplant. Being at home has been lovely, but Bob is still recovering and needs to be kept in a bubble whilst his immune system repairs. He has loved being outside and playing (maybe a little too much!!). Kitty and Ben have been so happy to have Bob home and it’s been great to hear the giggles and screams of them playing together.
Bob won’t return to school until September due to his cells probably not being high enough to join in the classroom setting. He will begin virtual teaching provided by our Local Authority. Life is looking a little different at the moment and a sense of added responsibility to keep him safe from general colds and viruses. Hoping for not too many more bumps in his recovery.
13th February 2024
So Bob has now been in just over 5 weeks and he has been amazing. He has bounced through the transplant so far. Other than losing his hair, which has been a huge heartache to Bob, he looks so well!
His cells are slowly climbing. We have been allowed to leave his room on the ward and have spent some time in the local parks around GOSH. We are beginning to become ace people watchers! Due to being immune suppressed and not having a functioning immune system, we have to stay out of shops, public transport etc - anywhere there are too many people (quite hard in London).
Bob is coping well, but longs to go home. Hopefully not too much longer before we can be home and he can continue to recover.
30th January 2024
Bob has been in transplant just over 3 weeks and after having a very rough week last week, he’s making huge progress. His neutrophils have risen and are sitting at 0.4, which is incredible. It’s very early days so we have to hope this trend keeps going.
Once his cells have risen enough Bob will be allowed out of his room for short periods of time. His day is broken up with School for an hour. It’s very much guided by him and there is lots of fun along with an ongoing Uno tournament. I’m glad to say Bob is currently leading 5 games to 2. Bob also has physio twice a week, which he loves. Even if he can’t get out of bed they just play games to keep his muscles moving and strong ready for when he feels up to do doing more. The play team come and visit him and he’s been doing lots of drawing too.
Although bored and constantly attached to an IV pump, his spirits remain high.
Thank you to everyone who has donated or sent Bob a little something, all hugely appreciated.
9th January 2024
Before July 2020 I was blissfully unaware of any immune deficiency, not least Chronic Granulomatous Disorder (CGD). Our lives were changed when both my sons were diagnosed with the disorder. My boys previously had never been unwell, I prided myself on fit, “healthy” children. I’d only ever been to hospital to have babies. 4 years on, Great Ormond Street Hospital (GOSH) is a familiar fixture and I know my local hospital pretty well too.
Both my sons in January 2020 became ill after playing in rotting wood chippings, which were mouldy and steaming. They had symptoms similar to pneumonia, but both had become ill simultaneously. Following a referral to John Radcliffe Hospital, a diagnosis of Hypersensitivity Pneumonitis was what was causing their ongoing symptoms. After 2 months of steroids, Bobby had improved, but Ben hadn’t and a diagnosis of CGD was determined for both boys. Ben received a Bone Marrow Transplant (BMT) in September 2021 and is now a healthy, active 10-year-old.
I was under no pressure to put Bob through a transplant, but as the only “cure” it was on the cards at some point. Bobby fell ill in February of last year having been around mouldy wood chippings during forest school and had a short stay in Pediatric Intensive Care at GOSH and a month on the ward. Bobby has primarily taken a back seat as Ben was quite ill following diagnosis and Bobby remained healthy. Following Bobby’s illness in March, I knew the battle between my heart and head over a bone marrow transplant for Bob was to end and he would need to go in for one once he was well enough.
Bob is now an inpatient at GOSH and starts his conditioning (chemo) today (Tuesday 9th January). He has the same donor match as Ben and will have the same chemotherapy course, which will last 8 days and he will then receive the donor cells over 2 days received similarly to a blood transfusion.
Bob is on Fox Ward at GOSH and won’t leave his room until his cell counts increase after having the donor cells. As he will have no immune system, cleanliness is key for everyone that enters.
Bob is very anxious and worried about what is to come, but otherwise in high spirits.
We would like to thank Bonnie for volunteering her time in writing her family's story. We really appreciate the difference she is making for those with CGD through her fundraising page for the CGD Society too.
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