For best cancer care, mother moves mountains

He stood on top of Mt Longonot, pensive like the expanse crater was the centre of his life. Scary yet beautiful.

This was not just a normal, arduous hike. It was January 30, 2021.

Allyn (Al) Mwangi’s climb to the top of the mountain was proof that his heart was finally okay and his tiny body that had been battered by tonnes of surgeries and tests, chemotherapy, a stem cell transplant, radiations to the brain and spinal cord, hundreds of blood transfusions and being hurled through tens of hospital corridors, was regaining strength.

“The chemo drugs had affected his heart. He had several heart failures between 2017 and 2019. There was a time he was in ICU (Intensive Care Unit). But he got well that the doctors were planning to stop his heart medicines. The treatment was working, he was finally producing his own blood,” says Esther Mwangi, his mother.

When your child gets cancer, you go through an emotional and financial roller-coaster that is hard to explain. Your head reels from the first news every minute.

I ask Esther how she coped? She misses the question twice. We all would or find no answer.

Five years ago, Esther found swellings on her son’s neck. They were small. She took him to hospital, out of caution, and the doctors had three theories: Tuberculosis, HIV/Aids, or cancer. They started with the least scary; TB, then HIV/ Aids and all were clear. They did a cancer test.

“The cancer test came back negative. It was December. We went on holiday relieved,” she says.

Two months later, the swellings in her son’s neck, were back and there were more in his underarms and groin. This time fewer but larger in size. “We went back to the doctor.

He did surgery on him to remove tissue from the lymph node in his groin and test it for cancer. The surgery was Sh70,000. This is a lot of money for any ordinary Kenyan to afford. But we were lucky we had a medical cover,” she says.

The lab reports came back, and they were not good.

“The initial test (a fine needle aspiration) had given us a false negative. We were told he had either lymphoma or leukaemia,” she says.

To further rule out either-or, they did more tests. In March 2017, the final tests came out. Acute Lymphocytic Leukaemia (ALL), a type of blood and bone marrow cancer, whose symptoms include swollen lymph nodes, fever, bone pain, bleeding from the gums, and frequent infections.

“It was a month to his fifth birthday,” Esther says.

“More tests were done; CT scans, X-rays, and blood works. They found more lymph nodes in his abdomen meaning that cancer had spread. The treatment started immediately after they fixed his teeth cavities to minimise the risks of infection. He was given a blood transfusion and the 16 chemo sessions began, combined with 12 radiation treatments on his spine and head, because leukaemia cells take up residence in the brain and spine,” she adds.

Relapse

Having a child with cancer is like taking a hike that will transform your life. You never think of giving up. You fight to keep them alive, day and night.

“I could only afford two hours of sleep, some nights I barely slept,” she says.

After about a year, the treatment seemed to have worked.

Al was to go back to school. He was just like any six-year-old; bubbly, eating well, and very loving that he would thank his mother for making food “even though it wasn’t very nice food.”

“I had been told to keep checking for any swellings on his testicles. One day, I checked and found something. Cancer had relapsed to the testicles,” she says.

Testicular relapse is rare, and Kenya has no treatment protocols for it, forcing Esther to go to India.

“We went to India for a fresh round of chemo and stem cell transplant. His brother Jack, then 10 years old, donated the stem cells.

He was only a 50 percent match, but we couldn’t get a perfect fit even in the international donors’ list,” she says.

“I had two sick children in a foreign country and constantly worrying about money. It took two days to harvest the stem cells from Jack. He was in pain, the drugs made him disoriented,” she says.

The removal of the stem cells from Jack’s bone marrow and transfusing them into Al went well.

After nine months, unable to sustain their stay in India, they came back for Al to continue treatment in Kenya.

Cancer wrings out every part of your life including secondary emotions. You become less embarrassed to beg. You beg from those you know and those that you do not.

“I begged for blood and money from everyone. There was a time, I’d pick medicines on credit, rush to Gertrude’s Children Hospital for emergencies without money and they’d treat Al. I asked for help from my university alumni, high school alumni…,” she says.

Money problem

In patients with leukaemia, cells go haywire, leaving the blood system with a ravenous appetite.

“For one year, he would receive blood platelets every week. It wasn’t easy. Sometimes, I’d send five donors to donate platelets, and all wouldn’t be a match because of weight issues, pregnancy... Then we’d go back to square one,” she says.

Then there was the money problem. The transfusions cost Sh150,000 a week in Kenya yet in India it was Sh30,000 and the hospital got donors as the health system has a well-structured blood donation system.

Besides that, Al’s monthly drugs cost Sh500,000 for the first four months after returning from India, and gradually reduced to Sh50,000.

In September 2020, a year after the stem cells transplant, a ray of hope fell on Al. He was getting well.

After four months, he climbed Mt Longonot. Stoic, he leaned on the Oloonongot Crater Point signpost, at 2,560 metres high.

“Because a stem cell transplant wipes out all vaccines, he restarted vaccination, just like a newborn baby. He got his first dose on February 2, ahead of rejoining school,” Esther says.

After seeing 15 doctors, in eight hospitals in Kenya and India and what Esther describes as “thousands of tests…name a test and chances that he had done it,” Al descended the mountain of life.

“His death caught us by surprise. It was on February 19, just months into his 9th birthday,” she says.

The blessings

But in the deep sadness of the loss of a child, you still count the blessings.

“Al had a big, big personality, and I’m not just saying that because he was my son. He was very popular in all the hospitals. He’d say thank you even to the nurse who pricked his hand to draw blood. A thank you for her service. I’d find notes that he had written to me. He wanted to be a chef and cook me masala tea. On one note, he wrote of opening a restaurant that feeds the poor for free. He taught me a lot,” says Esther.

Had she told Al about cancer? “Yes, luckily in my family we are very conversational so I did up to a level which he could understand,” she says.

How do you best break the cancer news to a child? I ask.

“Just talk to them as you usually do— give them hope, encourage and reassure them that you are with them every step,” she says.

How do you help a sick child when cancer affects schoolwork? “Honestly, school was the least of our worries. The most important thing was to be in touch with his friends. When we were at home, he would go see his friends and when we were in India, we organised Skype calls with his friends,” she says.

Cancer drills lessons in us. Empathy, especially. This sparked Esther’s interest in wanting to create childhood cancer awareness and raise money for needy children, through Faraja Cancer Support Trust.

“The finality of his departure, the helplessness of losing a loved warrior, realisation after having conversations with lots of friends, and family, that many people have no clue whatsoever about childhood cancer, made me want to help others. Al got a lot of help from around the world. His treatment for the four years gobbled around Sh30 million! I, therefore, know what it means to get help,” she says.