Diagnosed with leukaemia in April 2018, when he was just 15 months old, Omarni has experienced brain surgery, a stem cell transplant and countless medical treatments over the past three years.
Here his mum, Naomi, talks about the impact of Omarni’s diagnosis, and how a cuddly ted, given to him by Cancer Support UK at Christmas, brought the brave four-year-old much needed comfort at a difficult time.
“Omarni was around six months old when I noticed he frequently had diarrhea, so I took him to the GP. He then developed some lumps on his neck, which were enlarged lymph nodes. It took a further six months to get a referral to the hospital for blood tests and to see a paediatrician.
“When Omarni caught a cold from his sister, he wasn’t really recovering. He was very pale, had dark stools and began getting a rash on his cheeks which spread to his neck and chest.
“I took him to A&E at Royal Stoke Hospital, where they took bloods. Omarni was then transferred to Birmingham Children’s Hospital where they diagnosed Acute Lymphoblastic Leukaemia in April 2018. The next day, Omarni started chemotherapy and steroid treatment.
“Omarni’s development regressed, and he was bed bound. He stopped talking and walking. Omarni’s eyes were open but began to close more each day. Doctors ordered a CT scan where they said it looked like he had a blood clot on his brain and that he might have had a stroke.
“More tests proved the blood clot was an infection, so Omarni had two operations on his brain. Unfortunately, not all the infection was removed, so he remained in hospital for almost six months on antibiotics.
“Omarni endured complications, including a bowel obstruction and his Hickman line kept having to be replaced, but we managed to have some good times in the next few months, while he received standard treatment.
“When the pandemic hit, we shielded and it was lovely to have so much time at home with the family. Omarni enjoyed playing with his brother and sister and he was well.
“But in August 2020, Omarni had a seizure out of the blue. He recovered but while in hospital he had a fall. Tests showed he’d cracked his skull and had a bleed on his brain. He stayed in hospital to be monitored but then came home.
“Then in September 2020, when Omarni was given a CSF test, I was told that he had relapsed and that he would need to have weekly lumbar punctures until he was in remission again. He required a stem cell transplant, but there weren’t any matches nationally or worldwide.
“After various treatment changes, a match was found in America. Following setbacks with infections, Omarni eventually received his stem cell transplant in February 2021. It was a difficult few weeks with many complications, but in April he was able to come home.
“I’m a single parent to Omarni, his brother Omari, 13, and sister Omiyah,11. It’s hard being apart with long hospital stays and trying to arrange routines and school.
“Because of Covid, Omarni’s siblings couldn’t visit him in hospital. They were anxious and unsure how to be with him having had so much time apart. During the transplant Omarni looked totally different because of all the medication and fluid retention.
“Omarni is cheeky, charming, funny, determined, strong, courageous and a very lovable little boy. He wakes up every morning in a good mood and is very happy and cheerful.
“Last Christmas we thought Omarni might be in hospital for his transplant, but the date changed, and he was able to have Christmas at home. Everything was last minute and a mad dash to get presents, but we had a lovely time.
“The cuddly toy provided by Cancer Support UK last Christmas is wonderful. Omarni loves his teddy as it’s so soft and cuddly. It can be heated in a microwave, so we use it throughout autumn and winter for lovely warming snuggles.”
Nine months on from his transplant, Omarni continues to amaze his family and medical team with his progress. He attends a special needs centre one morning a week and is slowly increasing the hours he spends at school, which he really enjoys.
Omarni’s stem cells are working well and now only needs to go to hospital once a month for monitoring and reviews.
In 2020 we helped 4,952 people during their cancer journey, and as a small charity who receive no government support, you are a vital part of our work. For example, a donation of £5 could pay for a pair of toasty warm socks, included in our Kids’Kit, to help with the common side-effect of cold feet during cancer treatment. Please help us send more Kids’ Kits out to children like Mara by making a donation – thank you.
