Suzie when she was diagnosed
We thought it was just a normal childhood virus
Suzie was 5 years old when she became unwell. She developed a really high temperature and chesty cough so we thought it was just a normal childhood virus. We presented her to out local GP and he prescribed antibiotics.
However, she continued to spike high temperatures so we took her back to the GP I told the GP that I was worried about how pale she had become over the last couple of days so he sent her for a blood test. I asked the doctor if I should take her straight way but he said she should be ok to go tomorrow.
However, she had a nose bleed before we saw the GP which she had never had before so I decided that she should have the blood test that afternoon. Within 30 minutes of being home after the blood test we were called back urgently and told to pack an overnight bag for her because her haemoglobin was dangerously low (3.2). Suzie had an emergency blood transfusion.
It was upsetting seeing our child so ill and having no answers...
Initially it was thought that she had Transient Erthroblastopenia which is a slow developing anaemia in childhood. We were referred to a haematologist at Birmingham Children’s Hospital, we saw a consultant who suggested that a bone marrow biopsy was carried out to rule out leukaemia. The test came back which confirmed there were no leukaemia cells, at this point Suzie was feeling a little better but still not well enough to go back to school.
Over the next 9 months Suzie had monthly blood transfusions because although she was making new blood cells in her bone marrow they were not maturing. Once her haemoglobin dropped below 10 she would spike temperatures as high as 104 and this would happen on a 4 day cycle. She would start sneezing, have a high temperature and be completely exhausted. The following day she would be jaundice and sometime vomit and cry in pain.
This period was so exhausting and difficult, to see your child be so ill and having no answers or ways forward was both frustrating and upsetting.
After a year of tests they concluded that Suzie had RAEB 1 (Refractory Anaemia with Excess Blasts), a form of MDS.
After a year of tests the consultant spoke with a colleague who works in adult haematology and they concluded that Suzie had RAEB 1 (Refractory Anaemia with Excess Blasts) which is a form of MDS.
The only way to treat this effectively was with a bone marrow transplant. Suzie started to present with symptoms that suggested that her bone marrow was becoming unstable and she was at risk of developing leukaemia.
Suzie received transplant on 20th July 2012 from an unrelated donor from Germany. Suzie became critically ill during her transplant and spent her 7th Birthday in intensive care.
From diagnosis through to treatment there was very little information and support for us as a family, RAEB 1 is normally found in adults over 70. All the research that is online is very outdated and very little reference is made to children with MDS.
Suzie receiving her transplant
First shopping trip after treatment
Suzie on her way to recovery
At her gymnastics competition
It would have made life a little easier if we could have spoken to a family who had been through a similar journey
Suzie’s recovery was slow, she lost a quarter of her body weight and at one point she weighed less than three stone at he age of 7. At times we struggled to understand and get answers and although there were children receiving transplants for other conditions, there was no one with MDS.
Our lives changed almost overnight and it is hard to sometimes think back to those days because life was unbearable for us all.
However, Suzie did not cry once during her 9 week stay in hospital, she had to endure constant vomiting and stomach pain, her nasal tube would often have to be reinserted and she never once cried and just got on with it.
It would have made life a little easier if we could have spoken to a family who had been through a similar journey but for us the experience was isolating.
Suzie missed so much of her primary education and she struggled academically, she has worked so hard to catch up and is now working above expected levels for her age.