Kenneth Nganda: “My humble advice to caregivers who are facing similar challenges like we did is to please reach out and ask for help from your family and friends.”
Kenneth Nganda will never forget the day his daughter was diagnosed with cancer.
At that time, Gabriella was two years old, and the complete lockdown caused by the Coronavirus made it difficult for him to access something as crucial for her treatment as blood. Motivated by this situation, Kenneth initiated the crusade "Friends of Dr. Lalala's blood donation drive" to help his daughter and other children at the Uganda Cancer Institute.
"We saw children bleed for lack of platelets; we knew we urgently had to do something to stop this suffering and pain," he said.
Learn more about his story in this interview.
1. Could you tell us a bit about your daughter's diagnosis? When was it, what were you told, and how did your family receive the news?
Gabriella was a healthy two-year-old girl who had never been sick since birth; suddenly at the onset of the Coronavirus lockdown in Uganda, she developed severe fevers and body weakness. We took her to the family doctor thinking she had malaria or a bacterial infection as these are common among children in Uganda. Upon further investigations, her blood levels kept dropping rapidly. Our physician recommended we visit an oncologist who did a bone marrow biopsy and broke the news that our daughter had leukemia. This devastating news shattered our happy family. We were in complete lockdown (due to coronavirus) and had to start chemotherapy.
2.What were the main difficulties you encountered when starting the treatment?
The biggest challenge we faced at the start of chemotherapy was the lack of blood. Gabriella needed blood urgently even before chemotherapy would commence, and yet the entire country was facing crisis-level blood shortages due to the Coronavirus lockdown. We also had no family support whatsoever because our family and friends were under the mandatory lockdown.
3. What motivated you to start the crusade "Friends of Dr. Lalala's blood donation drive"?
They say necessity is the mother of all invention. Our motivation to start a blood donation campaign in spite of the lockdown was because of the urgent need for blood for Gabriella and other children at the Uganda Cancer Institute. For example, we saw children bleed for lack of platelets; we knew we urgently had to do something to stop this suffering and pain.
4. What were the main difficulties in mobilizing support and collaboration in the blood campaign held?
Our major challenge in starting the blood donation drive was the inability to freely mobilize. People were locked up in their homes, and we only used phone calls, text messages, and emails to reach out to them. This wasn’t very effective as only a few people responded. Some boldly told us they thought it was a trap for the COVID-19 mandatory vaccination, which some people never wanted. Many could not access the Uganda Blood Transfusion Services Center because of the lockdown. Still, some people expressed their fear of needles and blood. Generally, our first attempt at mobilizing people was not as successful as we had anticipated.
5. What are the benefits of partnering with other parents to address challenges faced during childhood cancer treatment?
Over the years we saw the need to start a support group and have partnered with other parents to start Ahavah Child Cancer Care Uganda. The benefits of working together are enormous. We now collectively plan for better nutrition for our children and even reach out to corporate companies to offer nutritious foods. Where resources allow us to fundraise and subsidize imaging costs for children. For those whose children gain Angel wings, our parent support group offers bereavement care and support. Certainly, with more financial resources, we will be able to do more for each other and for our children.
6. Can you give some advice to other caregivers who are facing similar issues and don’t know how to address them?
My humble advice to caregivers who are facing similar challenges like we did is to please reach out and ask for help from your family and friends. Cancer diagnosis and treatment require a strong support system. Also, please reach out and support those who are going through similar challenges. By doing so, we all offer support to each other and lessen the burden of cancer care for our children.
Blessings,
Kenneth Nganda,
Kampala Uganda.
