If only we could take our child’s pain away
Baby Zarrel Muchera has been fighting hepatoblastoma (cancer of the liver) since he turned two years in December 2020. He needs an urgent liver transplant to offer him a chance of survival. His parents share the agony of taking care of a chronically ill little one.
When Morgan Muchera and his wife Faith discovered that they were expecting their first child, they were excited and looked forward to welcoming their bundle of joy and a great parenting journey ahead. However, that wish and desire was short-lived.
Zarell was born on December 5, 2018. According to his father, he was a normal and active boy and would play in the house with his toys or with other children.
He started ailing in December 2020, just after he had celebrated his second birthday.
“In the same month, we noticed that his stomach was swollen for about three days.
We took him to Kitengela Medical Hospital where the hospital could not tell with certainty what was wrong.
We was referred to Kenyatta National Hospital. Here, it was discovered that there were some tumours in his body.
The doctors recommended that he begins chemotherapy sessions, which he started in January this year," explains Morgan.
He recalls how he received the shocking news: “All I heard was, ‘It’s not good. Your son has hepatoblastoma,’ and then a smattering of words.
My brain slowed down— I couldn’t focus on what the doctor was telling me. It wasn’t easy for my wife and I.
We shed tears, a lot of tears. We were sad and even lost hope and thought that was the end.
We had to go for several counselling sessions and at some point we thought it was witchcraft,” narrates Morgan.
Dr Irene Nzamu, a consultant paediatric haematologist-oncologist at the Kenyatta National Hospital/University of Nairobi has been attending to Zarrel and says that he has a malignant tumour of the liver, medically known as hepatoblastoma.
“Hepatoblastoma is an aggressive, malignant cancer of the liver. It is the most common liver cancer in children and is caused by uncontrolled abnormal multiplication of primitive undifferentiated cells in the liver.
The reason it occurs is generally unknown, though there are some risk factors that have been identified, which predispose children to developing hepatoblastoma,” says Dr. Nzamu.
According to the expert, hepatoblastoma usually affects children younger than three years, with the median age of diagnosis being at one year.
It is rare in older children, adolescents and adults. Dr Nzamu offers: “A few of the identified risk factors include low birth weight, prematurity, some genetic syndromes such as Beckwith Wiedermann syndrome, Familial adenomatous polyposis, among others.
Some of the symptoms that may present when a child is affected include abdominal mass and distension, abdominal pain, poor appetite, vomiting, weight loss, anaemia among other symptoms.”
Baby Zarrel has been receiving treatment at the Kenyatta National Hospital where he underwent two successful surgeries in May, this year.
Dr Nzamu says he has responded to treatment well since the diagnosis. “At diagnosis, his tumour was large and not operable.
He had a biopsy to confirm the diagnosis and he received chemotherapy, which reduced the size of the tumour to make surgery possible.
Thereafter, he successfully underwent two surgeries and the disease had been under control.
However, recently the tumour recurred at multifocal sites despite chemotherapy and surgery, and unfortunately it is not operable.
He requires a liver transplant,” Nzamu explains.
His treatment options at this stage include salvage chemotherapy regimen (which he is already receiving) in an attempt to slow down the rate of tumour regrowth, as the family prepares to travel to India for liver transplantation, which offers him a chance at survival
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face.
Beyond handling physical challenges and medical needs, you will have to deal with your child’s emotional needs and the impact that a prolonged illness can have on the entire family.
For Zarrel’s parents, the journey has been really tough and they can only pray and remain optimistic that their son and only child will be healed.
Morgan offers: “There is no pain like that of parents seeing your child suffer from such a disease and you can’t help him.
The medical costs have drained us financially and we have had to spend even the savings we had made for several years.
It has reached a point where we have started selling some of the investments we had made as a family and the sad part is that even after that, the money won’t be enough to cater for our son’s travel and medical expenses to India.”
They have also experienced a lot of physiological turmoil asking ‘why them?’
Bringing back the smile
Zarrel’s treatement in India is expected to cost Sh4 million.“The doctors have said it is very urgent since his abdomen is swelling and he has getting uncomfortable.
In fact, his eyes have turned yellow, a sign that his liver has started to fail,” Morgan says.
For Zarrel’s parents, they can only keep faith and hope alive as they continue to trust in God for their son’s healing.
“We believe that God will fight for us this battle. We believe our son is innocent and within no time, he will be okay and happy as he used to be.
We wish to make an appeal to any Kenyan who can sponsor us to facilitate Zarrel’s treatment in India and Kenyans of good will to assist us raise the Sh4 million required to help save his life and bring a smile back on his face,” says Morgan.
If you wish to support Zarrel, you can channel your contribution to the Paybill Number: 4054311; Account Number being your name.