In June last year, five-year-old Kirabo Mirembe was declared cancer-free, after two years of battling the disease. “I was happy and thought I would go to school again and attend Sunday school that I love so much,” she says.
Her family, overjoyed by the news, started making plans for a thanksgiving, only to be told that the cancer had returned – just four months after they had received the good news. Baby Kirabo, as she is known by people who have heard about her, was first diagnosed with Acute Lymphoblastic Leukemia in March 2009.
It is a cancer, which occurs when the bone marrow has too many immature white blood cells, which suffocate normal ones. Children have an eight out of 10 chance of beating it.
Kirabo was admitted to the Mulago Hospital Cancer Ward, where Dr Victoria Walusansa and her team used a combination of medicines to try and kill the cancer cells – the procedure known as chemotherapy. She stayed in hospital for three months but even after three cycles of the treatment, the cancer was still in her body. And in May that year, she was referred for specialist care at the Apollo Specialist Hospital in India.
“Although treatment at Mulago is free, it cost us approximately Shs20m mainly for drugs and accessories that were not available in the hospital pharmacy,” Ms Enid Nambuya, Kirabo’s mother says.
For a year starting June 2009, Kirabo remained a patient in India. She underwent chemotherapy at the hospital for three months at a time. During this treatment, Kirabo suffered several aches and pains, lost her hair but she kept her beautiful smile on her face through it all.
Kirabo then became an outpatient in Uganda from July 2010 where she received oral drugs and injections in her spinal canal. In June 2011, all this painful treatment paid off when Kirabo underwent a full body checkup in India, and the doctors declared her cancer-free.
“This phase cost us $45,000 (Shs112m), including air travel,” Ms Nambuya says. “Rotary Club of Kampala, staff of United Nations Development Programme (UNDP), the Rev Diana Nkesiga and the congregation of All Saints Cathedral Nakasero, the Governor Bank of Uganda’s office, Civil Aviation Authority, Lions Club Kampala, staff and parents of Kinder Kare Kansanga, family and friends, plus an anonymous donor from abroad raised this money.”
Between July and November last year, Kirabo continued taking her final oral medication while getting her full blood checks done. These were to take another year. “She was now able to get out of the house and do normal stuff young children like to do,” her mother says. “Her appetite was a bit off but we thought she was just being a picky eater.”
In November, Kirabo’s mother took her to the hospital for her regular checks. That day, she had a slight temperature and a headache. “We did a CBC (Complete Blood Count), which is a test we use to see if the cancer is in remission, which is a condition when the symptoms of the cancer have reduced or that it has for lack of a better word, ‘cured’, says Dr Paul Muyanga who saw Kirabo at SAS Clinic. “When we did this, we found that her white blood cells were more than they are supposed to be, indicating that the cancer had relapsed.” But the cancer was back.
Dr Muyanga says leukemia sometimes relapses because of infections. Kirabo suffered from flu and cough, which children usually get, and the doctor believes that the spinal cord tried to fight these but instead of producing the normal number of white blood cells, it produced an excess causing the relapse. Doctors took more tests to confirm the results, and concluded that she will need a bone marrow transplant (BMT).
She is now in India. While she waits for the transplant, she has received chemotherapy, which she tolerated well but later developed a convulsive fever, difficulty in breathing, and her heart beat faster than normal. She has also had numerous blood and platelet transfusions and very expensive antibiotics, which fight the spikes of fever she continues to suffer. This increased the estimated $10,000 (Shs25m) for this phase to $23,000 (Shs58m) at the time of discharge, her mother says.
Kirabo’s doctor has recommended unrelated marrow from Cord blood that will be found in an international bank for transfusion. Initial tests have been carried out to identify about eight donors.
Kirabo will be making six come this May but this depends on getting this transfusion in time. Her family, with the help of numerous friends has tried to raise money for the operation. In fact, tomorrow, Qwela band is dedicating its show at Emin Pasha to raising money to help Kirabo beat the cancer, and Rotary Club Kampala has an appeal dubbed, “Give Me a Chance to Live Again”, in an effort to raise money before February 4.
The balance needed for the operation is $129,000 (approximately Shs323m), which includes a hundred days in the BMT unit. “Just seeing this figure makes my eyes water but I believe we shall get it slowly but surely,” her mother says.
To help, contact Kirabo’s grandmother Ms Wataaka on +256792169616, her aunties, Liz on +256702266552 and Maggie on +256752973910, or, make a deposit on Gertrude Tophas Wataaka and Kirabo Mirembe savings account, 0121485171001, Stanbic Bank, Garden City branch.