After diagnosis Zak was placed on an intensive programme of chemo and steroids treatment at The Royal Marsden Hospital
Cheeky little Zakaryah, or Zak as his family call him, was just two years old on 22 May 2022 when he banged his little toe on the family’s washing machine. The toe was a bit pink and sore the next day, so his mum Amina contacted NHS 111 for advice. However, within 48 hours the toe was purple. A worried Amina got Zak’s toe checked by their pharmacist, who said it was broken and should be seen at A&E.
Zak was put on antibiotics, but still the toe got worse. Amina brought him back to A&E at the East Surrey Hospital, who said the toe was infected. They kept him in overnight and did blood tests.
The results they received were devastating. Zak had cancer. Acute lymphoblastic leukaemia. By now the toe was practically black. Zak was rushed to St George’s Hospital and placed in the intensive care unit, as they thought he might potentially have a flesh eating disease.
For Amina and her husband Suhaib, the next 48 hours passed in a mind numbing whirl. First Zak was put on really strong antibiotics. Then they were told that if the toe didn’t improve, it might need to be amputated, or even, worst case scenario, the whole foot.
It was unthinkable how, in just four days, a seemingly innocuous injury had become a cancer diagnosis.
Zak’s mum Amina describes her son’s cancer diagnosis as a very scary time
“Nothing was making sense to me, my head was just spinning,” Amina recalls. “It was a very scary time for us all. I felt like we were on an out of control rollercoaster. There were so many doctors and nurses in the room. Suddenly they were talking about putting a port in, to allow bloods to be taken.
“Luckily, a blood blister formed on the toe. They cut into the skin and black blood came pouring out.
“The doctors at St George’s kept saying ‘thank goodness for mothers’ instincts, because I kept pushing for him to be seen.”
Zak was kept in St George’s for two weeks under observation, then was taken back to East Surrey.
Zak before his hair fell out due to treatment
Amina and Suhaib were taught how to insert a nasogastric tube (NG tube), which is a special tube to carry food and medicine to the stomach through the nose.
“We thought it was something temporary and wondered why they were teaching us to do something that nurses would normally do. Nobody told us that Zak would need it for his feeding and medicine on a daily basis.”
After two weeks Zak was allowed home but continued to receive an intensive programme of chemo and steroids treatment at the Royal Marsden Hospital.
“The doses gradually intensified over a three-month period. At one point he was having chemo nearly every day and his hair fell out.
“Then for about a year he received maintenance treatment. Now every six months he has a lumbar puncture, as well as vincristine chemo once a month. At home we give Zak methotrexate weekly, Dexamethasone (a steroid) every month and co-trimaxazone at the weekends.”
Amina speaks knowledgably and calmly about the management of Zak’s complicated treatment, as she and her husband have had to immerse themselves in his care.
It has certainly not been easy though coming to terms with Zak’s cancer.
“When he was diagnosed I felt disbelief and shock. Our whole world has turned upside down. You think what have I done to cause this. The staff are very good, they reassure you that there is nothing you can do to prevent or cause it. We learnt that Zak’s immune system was very low and that if he hadn’t had the toe injury, we would have found out about the cancer another way about at some point.”
Life with cancer is tough for little Zak. He has good days and bad days, when he feels sick and his legs hurt. He also gets jaw ache. But because he is so young, he doesn’t know anything different.
Zak right, with his sister Kyra, left, is still receiving treatment, but less than before, so he is able to attend school
Cancer has not dimmed Zak’s vibrant personality. Amina describes him as: “Playful and such a joy. You never see him upset over anything. Everyone loves Zak. He’s a very active child who loves riding bikes, swimming and playing football. He never sits still.
“Zak is such a little fighter. Despite always being in pain, he just gets on with life. We encourage him to exercise and he continues to ride his bikes – he’s an amazing bike rider.
“It was very difficult in the initial stages of the cancer. When he was younger he would just cry, but now he’s older, Zak can tell us exactly what’s going on with his body. We are managing things better and so is he.
“His appetite is very up and down though and I work hard to ensure that he has a balanced diet, even though his tastebuds change, as they are affected by the treatment.”
Zak’s big sister Kyra, age six, is a gentle, loving child who adores her baby brother. She enjoys helping care for him, whenever she can. Although she likes being the big sister, she does miss her mum greatly, whenever Amina has to stay in hospital with Zak for appointments.
Amina has her hands full, as not only does she have the two children to care for, she also looks after her 83 year old father who lives with them.
Zak takes his Warmies Cuddles bear everywhere with him
“It’s been the hardest two years of my life,” says Amina, “which is why the arrival of Cancer Support UK’s Kid’s Kit was so welcome. The kit brought joy into Zak’s life. He sleeps with the warmable cuddly ted and plays with it constantly.
“Zak takes his Kid’s Kit with him every time he has to stay in hospital. He finds great comfort holding his Warmies(R) cuddly ted.”
Zak is supporting our Cuddles for Christmas 2024 appeal. We’re aiming to send out 1,200 cuddly Warmies(R) teddies to children just like Zak, who are enduring all the discomfort and loneliness that comes with cancer treatment. But to do this we need your help. Each teddy costs just £12 to deliver and you can add a special message to the one you help to send Please donate here.
