Sidney Chahonyo: The cancer survivor who advocates for access to treatment for Kenyan children

After being misdiagnosed by different doctors and facing the side effects of radiotherapy and chemotherapy, this Kenyan survivor is determined to share their story to help others. He has been cancer-free for 18 years and now leads “Hope for Cancer Kids", an organization that raises funds to support children from less privileged backgrounds who are facing cancer. We invite you to learn more about their story in this interview.

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Sidney Chahonyo on his organization Hope for Cancer Kids

• 1. At what age were you diagnosed, and what did you feel at that moment?

  DesI was diagnosed with Cancer of the Post Nasal Space (where your ear, nose and throat meet) at the age of 19 (I was diagnosed in February 2004 and in November 2022, I celebrated 18 years of being cancer free).

  I had just finished high school and had a scholarship to go and study aeronautical engineering. A lot of my friends had already left for university abroad by the time I got my diagnosis.

  At the point of diagnosis, I was in the doctor’s office with my dad. He had always been a pillar of strength. I had never seen him look vulnerable. When the doctor mentioned cancer, I looked across at him and could see he was balancing a tear in his eye. I had never seen my dad cry or even look vulnerable ever before. I thought of my mother and 5 sisters back home. If he looked so broken, how would they respond? I do not remember much else that happened at the doctor’s office that day. I do not remember what else he said after “cancer”. I vaguely remember sitting my sisters down at home and us having to break the news then calling my other sisters who were not in the country.

  I felt like my life had stopped. Strangely enough I did not think of death. I was scared for my family, helpless and confused. I was worried about how they would be able to deal with what was going on with me. I just wanted to know what was going to happen next. After my Ear Nose and Throat (ENT) doctor diagnosed me he referred me to an oncologist who was very positive about my case. He had treated several people with the same cancer and was positive that I could beat it because it was caught very early. From then on, I put my trust in him and in God. I never once thought of death. I kept telling myself that I was going to beat it, however hard the journey. And that I had to be strong and look strong even when I wasn’t feeling strong so that my family would encourage me.

• 2. How was the treatment process for you? How long did it last, and what emotions did you experience?

  Diagnosis

  Before I get to treatment, let me take you through my journey of (Mis)Diagnosis. The symptoms were not very worrying at first. I got flu-like symptoms. Runny nose etc. But never really thought much about it. Then I started getting very mild headaches at the top right part of my head. Didn’t think much about that either. Finally, I started nose bleeding. But the incidents were few and very far apart.

  With time, my symptoms got more severe. The headache got worse and the nose began bleeding more frequently. You drink water, sleep it off, self-medicate etc.

  Let me take you back a little bit. At the age of 7, I went on holiday with my family and got a very severe case of mumps. I was misdiagnosed and treated for Malaria. I had an adverse reaction to the medication and lost hearing in my left ear. So I have had one sided hearing since then. Back to my diagnosis. What actually made me go and get checked was I began losing my hearing. The growth was beginning to block my hearing passage and that is what made me start to realize that there was something going on with me that I needed to seek help for.

  I began going to different clinics and hospitals including the best private hospitals in the country and kept being treated for sinus related problems. “Take this pill for 15 days and you should get better”. This happened over and over again until I was referred to an ENT. As soon as I explained my symptoms to him, which had become very frustrating as I had narrated this to many doctors before, something clicked and he asked me if I had told the other doctors what I was telling him. He said he thought he knew what it was but had to do a few tests including blood work, a CT Scan & MRI which led to a biopsy. It took around 6 months from the onset of my symptoms to diagnosis.

  Radiotherapy

  I was referred to an oncologist and radiotherapy was the first course of action. I would go in once a day from Monday-Friday for what to me at first seemed like a 20 minute x-ray. Around the third week, I started experiencing the side effects.

  I was unable to taste food because my taste buds were affected by the radiation.

  My saliva glands dried up and I had to carry a bottle of water with me everywhere or else I would choke.

  Eating and even drinking water became extremely painful and I even begun to suppress my yawns because of the pain.

  I was so weak that I was scared of showering or having a bath. I thought I would fall or not be able to get out the bath and drown.

  Weight Loss – I remember at one point losing about 10 kilos in a span of almost 15 days. I had to be admitted and fed intravenously as there was so much pressure on the brain due to the treatment and my body was rejecting everything. Even water.

  No appetite, nausea, throwing up even when there was nothing else to throw up, can't taste food and eating was too painful.

  Most people say chemo is much worse but for me, radiotherapy was the hardest part of my treatment. I did radiotherapy for about 4 months. Monday-Friday.

  Chemotherapy

  As said above, radiotherapy was much worse for me. For Chemo, I was admitted between Monday and Thursday on a monthly basis for them to administer chemotherapy intravenously. I had to rest for 3 weeks between cycles for my body to recover from the toxicity of the drugs. Before my next cycle I would have to do tests, bloodwork and scans, to ensure my body was ready for the next bout of chemo. The side effects were quite similar to radiotherapy but not as intense for me. Nausea, weakness, loss of appetite etc. I remember at some point I could not find my chemotherapy drug locally. Carboplatin. I looked all over the country and couldn’t find it. Luckily my eldest sister is a pilot and had a wide network of friends all over the world looking. We looked in South Africa, Europe, the United states and still couldn’t find it. It was finally found in Dubai for about $400 a dose.

  I remember my family rallying behind me financially and making tough sacrifices to enable me to get the treatment I needed and I will be forever grateful to them for that.

• 3. What helped you keep going while you were undergoing treatment?

  To be very honest, without my family, I would not have made it through. They ensured I got everything I needed at that time to a point that it was a bit overwhelming because I just wanted to be treated like a normal person.

  I also remember reigniting my relationship with God. You reach a point where you have no one and nothing else to depend on and can only rely on God. My faith got me through the tough days, the pain and the mental strain I was facing.

  Finally, I remember from day 1 at the time of diagnosis. I never thought even once about death or not making it. I made a conscious decision that I was going to fight this thing with everything I had. And that I would overcome it. Cancer is as much a mental disease as it is a physical one. And it took every ounce of my mental capacity to stay positive even on my bad days.

• 4. What is your daily life like as a survivor? Are there any areas where you feel affected by having had this illness?

  One of the long term effects of radiotherapy for me was that it affected my hearing. In 2017, about 13 years after treatment, I experienced a significant amount of hearing loss. At that point I was being inducted into a new job and I just could not perform or communicate. I ended up losing that job. I had to get a hearing aid to be able to communicate properly. I almost reached a point of depression. I cannot effectively communicate though I still struggle in noisy environments.

  My daily life involves working at an amazing organization called Hope for Cancer Kids. We raise funds to support children battling cancer. My days involve telling my story, sharing our patient stories and building partnerships with like-minded individuals and organizations to enable us to better serve the children.

• 5. What would you say to young people, children, and their families who are dealing with childhood cancer?

  Cancer is NOT a death sentence. It CAN be beaten. I am trying to change the narrative out there that cancer is a death sentence. I am using my story and experience to raise awareness about childhood cancer. Cancer is not an easy journey to walk but whatever your situation and whatever the outcome, THIS IS A FIGHT FOR YOUR LIFE. Give it everything you have and do not give up. And if you have the opportunity to interact with and encourage someone else in a similar situation, or the opportunity to be the voice for the voiceless and advocate for a better healthcare system, do not let that chance slip. It may not affect you directly but the satisfaction you get from helping others and making a difference in someone’s life is unparalleled.

• 6. You currently lead an organization to support others with this illness. What motivated you to do that, and how was that process?

  After going through cancer, I started looking at life from a different lens. I began looking for ways to pay it forward and help someone going through something similar to what I experienced. I first began by volunteering at the pediatric oncology ward at Kenya’s largest referral hospital. I would go in from 8am to 5pm from Monday to Friday for a period of about 6 months. After I stopped, I decided to go back to school and get a degree. I initially wanted to do medicine or biomedical science to help people in that way but I ended up completing a business degree while waiting for some universities to get back to me. After working for a few years and being unfulfilled I went back to the hospital to see how the ward was doing.

  I was introduced to a lady who was at that time the Board Chair of Hope for Cancer Kids. We had a very fruitful talk and she invited me to their offices to learn more about them. She invited me to join the board but first wanted me to meet the team and learn a little more about the organization. I met her on a Monday or a Tuesday, went in to meet the team on a Wednesday and was invited to a board meeting the next Thursday. I was unanimously voted into the board. Her next statement was “I am stepping down from the board and want to propose Sidney to succeed me”. I was in quite a bit of shock but I was unanimously voted in as the board chair.

  I served as the board chair for two consecutive terms of 3 years. I then was able to secure a grant for the organization that required the primary participant to be a staff member. We had previously been volunteer based but I felt that it was time to step down from the board to take on a more hands-on role and shift the growth trajectory of the organization by working on it full time. Hope for Cancer Kids was the best decision I ever made. I believe everything happens for a reason. I believe I got cancer and beat cancer so that I would be able to use my experience to positively impact the lives of other people going through cancer.