Story of Our Inspiration
Leo’s Story
Our beautiful and gentle son, Leo, was born in February, 2019. Nearly 5 months later, we discovered that he had a large brain tumor. The next 3 and a half months, he underwent several surgeries and two rounds of chemotherapy. Our Leo was a strong boy who battled infections and seizures for numerous weeks. During this time, Leo’s big brother, big sister, mom, and dad were by his side every single day, helping him get better in every way possible.
Throughout this time, many family members and friends came alongside our family in incredible ways. Our hours were so devoted toward Leo that it was difficult to manage other aspects of our life. In such a challenging time, our well-wishers helped us with finances, brought food for us when we were too occupied to eat, prayed for us and inspired us. Even people we didn’t know came by our side to help us and encourage us to be strong.
Even though Leo didn’t survive his battle with cancer, we are grateful to all the people who showed us that they cared. We discovered how stressful and demanding it is for the whole family when a child is diagnosed with cancer. Our experience with Leo’s cancer treatment inspired us to help other families going through their own child’s cancer journey.
Leo’s daddy grew up in Nepal and we want to help families like ours in Nepal. Based on incidence data, every year in Nepal, approximately 1-1.5/10,000 children develop cancer out of which 1,100-1,600 are expected to be new cases (Source). With a literacy rate at 65.9% and economic growth of only 3.4%, the major challenges in pediatric oncology in Nepal include a lack of education, late diagnosis, advanced disease at presentation and financial problems (Source). That is why we want to contribute in helping children and families fighting pediatric cancer in Nepal.
We want to ease the burden of these families by providing financial support that they can use for their rent, food, school, clothing and transportation as well as to compensate for their lost wages during the difficult time, so the family is able to spend time with their child who is sick as well as their other children.
The Journey
From Leo’s cancer diagnosis to his hospitalization and throughout his cancer treatment, we learned that not only do the children being treated for cancer go through the struggles; their families go through it with them. In our experience, we found that even small efforts played a huge role in easing our stress during this crisis. There were social workers who helped us with financial resources and useful logistical information. Then there were child and family life specialists who helped Leo and his siblings cope with the difficult process. Our other two children benefited greatly through libraries, play areas, music therapy, art, and crafts, which helped calm their minds and handle the medical treatment of their little brother in a healthy way.
The Need
We, as a foundation, chose to help pediatric cancer patients in Nepal. Our research on the pediatric oncology service in Nepal revealed that the situation of children with cancer in Nepal is more dire than we imagined.
Childhood cancer care delivery in Nepal is primarily through two government hospitals: One is Kanti Children’s Hospital (KCH), the only tertiary level pediatric hospital in Kathmandu, and the other is Bharatpur Cancer Hospital outside Kathmandu valley. Other government hospitals which provide some service for child cancer are Bir Hospital (National Academy of Medical Science), Bhaktapur Cancer Hospital, and Tribhuvan University Teaching Hospital (Source). It is difficult to accommodate the number of pediatric cancer patients in such a limited number of hospitals. Moreover, the existing hospitals themselves are struggling to treat patients due to a lack of modern equipment, lack of appropriate medications and scarcity of pediatric oncology experts.
On top of that, the economic condition is poor in Nepal with 27% of the population living below the poverty line (Source). In Kanti Children’s Hospital alone, the cure rate of cancer is currently around 40%, with 35% abandonment of therapy due to financial burden and 25% mortality (mainly due to infection, drug toxicity, and relapse) (Source). So it is urgent that appropriate help reaches these children.
How We Can Help
When we went through our process we found that the whole family goes through the journey. We have two more kids ages 5 and 7. Since we were so engaged with the treatment process and interacting with doctors, it was difficult for us to manage their home and school routine. During this time, we realized how small things can be done for the parents to focus on the treatment of their child. Social workers and child therapists helped our children understand and adapt to the situation. Likewise, they spent a lot of time in the hospital library and play area with social volunteers, which helped our situation. This is what we envision for the children and families in Nepal as well.
We concluded that even a small amount of money can help a family or two on their journey with their child by making it a little easier to balance the cancer treatment and their home life. We want to help families through financial needs such as housing expenses, food and transportation costs, medical treatment and pharmacy costs. Furthermore, we want to donate to establish a small library where the children can spend time in a safe environment.