In October 2018 Gabriel became very sick and was eventually diagnosed with acute lymphoblastic leukaemia (ALL), a type of cancer. Gabriel is currently being treated at Great Ormond Street Hospital (GOSH) and his local hospital and scheduled to finish treatment in March 2022. Here his mum, Seyrah, tells their story.
I knew he was not OK
“It was October 2018 and I noticed that he had this cold and cough that just wouldn’t get better. His face swelled up and he was getting more tired. Because Gabriel has autism, he has a lot of energy. He would just lie down on the carpet for a long time, which was just out of character for him.
“At this point I took him to the GP because I was worried. He wasn’t himself. However, the GP said he was ok and if he gets any worse just bring him back. I noticed he’d become wheezy and was struggling to breathe. So, I took him to A&E and they gave us an inhaler to help with his breathing, but it didn’t get any better.
“On the 3rd November 2018 he just couldn’t sleep and he was crying. I was getting really nervous as I’d tried everything, and nothing was working. His face was swollen, and he still couldn’t breathe, so I called the ambulance. Then he vomited, and he vomited a bit of blood, so at this stage I really started to panic.
“The ambulance crew came and listened to his chest and they weren’t happy with his breathing –something was clearly obstructing his breathing. So, they took him to our local hospital. They asked me if he had lost weight and I said ‘yes’, he had lost a lot of weight over the period of 2 months. He wasn’t eating, he was just ill all the time, and the cough wasn’t getting better.
“They took him for a chest scan as he was struggling to breathe and that’s when they found something in his chest. They took his blood and because of his white blood cell count they suspected that it may be cancer. However, because they are not a specialist hospital, they needed to refer us so we could get the right treatment. I had never in a million years thought it would be cancer, I just knew he was not ok. By 10am that morning, after the night in A&E, we were on our way to GOSH as a matter of urgency.”
GOSH and the diagnosis
“When we arrived at GOSH, because the tumour was on his chest and obstructing his airway, they had to put him on life support, because he couldn’t breathe on his own. It was so scary. He was in intensive care and on life support for six days. I still can’t believe what we went through. You hear about it, but you never think it could be your child. It was surreal.
“They took him to theatre to try and find out exactly what it was. When they brought him back from theatre, they wanted to give me more information. That’s when I found out that it was acute lymphoblastic leukaemia and at stage 4. It was in his chest and it was the size of a fist.”
Chemotherapy, giraffe ward and Jenny the Play Specialist
“They tried to remove the cancerous mass, but they said it was too close to his heart. So, then they tried chemo to try and flush it out of his system and thank God it worked. From then on, for six months, we were in GOSH every day. From intensive care, they moved us to Giraffe Ward. We were on the ward for 10 days where they trained me on how to administer his medication at what times.
“They also taught me how to insert his nasogastric (NG) tube [a flexible tube that is passed through the nose, down through the oesophagus and into the stomach] making sure it was in the right place. He wasn’t eating well, so he had to have his medication in his drink. He would have milk to ensure he had all the nutrients, so his body could fight the disease.
“At the beginning it was quite intense. It would either be a dose of his chemo; it was different kinds of chemo at the beginning. Or he’d have a lumbar puncture where they’d put Gabriel to sleep and then take a sample of fluid from his spine to check if the chemo was working. Some chemos were around 3 – 4 hours to do and in between that Gabriel would get angry. He would just cry because he didn’t understand the way he was feeling.
“The play specialist Jenny, she’s amazing. When Gabriel sees her now she gets kisses and cuddles. They are like best friends. At the beginning he was frustrated, but now he would ask me “mummy, can we go to Great Ormond Street to see Jenny?!” They would sing nursery rhymes, they would play games, she would dance. At one point they even brought musical instruments; a drum, a guitar for Gabriel to play, as he loves his music. They made our time there a bit more enjoyable, so it wasn’t so scary.
“He finished the intense chemotherapy mid-way through 2019. So now we go to GOSH every 10 weeks for the lumbar puncture to make sure that the chemo is doing what it’s supposed to be doing. Every week we also go to our local hospital for another part of his chemo and then he also takes the oral chemo at home.”
Treatment during 2020
“With Gabriel going through chemo it was so scary with the pandemic going on. You’re just scared of the worst. I tested positive for Covid-19 last March/April, so we had to stop his chemo just in case. I was so scared because Gabriel loves his cuddles and kisses. Of course, he would come to me and I would say “no Gabriel, you have to stay away from mummy”. And he would say, “but why?!” The chemo reduces his immune system, so they stopped his treatment to give him the best chance to fight, just in case he got Covid. But thank god he didn’t.”
Grateful for GOSH
“At the beginning it was so challenging. We got admitted to hospital a lot because of infections. If he got poorly his body couldn’t fight it, because he was having the chemo. I’m just grateful that he’s doing much better now. He’s a lot happier now. When I say to him that we’re going to hospital, he claps his hands. He loves it! March 2022 is the end point for Gabriel’s treatment. We have everything crossed!
“Every time I drive home from GOSH with Gabriel, I’m so grateful that there is a place like this for my Gabriel. The support the doctors and nurses give is amazing. When Gabriel is scared, they do everything to calm him down: singing nursery rhymes, watching trains on his Ipad and just commenting. All to calm him down. They bring themselves to Gabriel’s level, just to please him. If there wasn’t a place like GOSH, Gabriel would not be here. I would not be ok.
“GOSH gives us hope. Nothing is too challenging for them. They are always looking for ways to help us. Gabriel got side effects when he’d wake up after his treatment, but they were always looking for ways to ease it for us. To make sure he was not so overwhelmed, so agitated. To know that this is there for us, I’m forever grateful. Every day I thank God that these services are available for us as it’s helped Gabriel come a long way.”
Hopes for the future
“I hope Gabriel can lead a normal life and I hope that when all this treatment is done, he’ll be happy and healthy. This is what I hope and pray for him. I hope he’ll grow into a handsome, good, young man, continue with his education and become something. I’d want him to be a good person and look out for other people.”