Caregiver Speak: Cancer is No Child’s Play

I’m sure you will agree with me when I say that children are the most precious gifts from god. They come into our lives and fill it with stories, laughter, and also dirty laundry! On a more serious note, though, they give us a purpose in life. 

My first child is a daughter. Daughters are generally their father’s darlings, and mine is no exception. She resembles me a lot. We named her Manasvi, a Hindi word which is translated as ‘intelligent’. It is only after she came into our lives that I realised how soft the skin of babies can be, and how melodious their voices are when they try and speak – for me, especially so, when she says ‘papa’. 

When my daughter was 20 months old, my wife was expecting our second baby. It was an exciting time as we looked forward to the new arrival of a new member to our family. 

Manasvi was at an age when she was starting to understand speech and it was fun to interact with her. Around this time, however, she began to fall sick. At first, we thought it was some sort of an infection. We were advised to get her blood tested.

The News

Reports showed that the blood count was very low. The doctor at the clinic told us that we needed to visit a bigger hospital with the reports. Immediately, I contacted one of my relatives who is a pediatric oncologist. 

B-cell acute lymphoblastic leukemia, he diagnosed. I was shocked. I tried to keep the news from my wife, considering her delicate condition at the time. But she soon found out. It was, by far, the worst news we had received in our entire lives.

What came next

The first step was to find a hospital where we would get the right treatment within our budget. We had a family insurance plan that would provide upto 12 lakhs of treatment coverage. This came handy for us at a crucial time. I highly recommend everyone to sign up for health insurance that is very helpful in cases of any emergencies or unforeseen circumstances.  

We booked an appointment with a paediatric oncologist at a specialist hospital. Simultaneously, I also got in touch with Onco.com through an online search engine. Care manager, Dr. Shivani, advised us on the treatment course, the side-effects, the duration etc. to help us plan ahead. I would share the medical reports with her each time, and she would help me understand them better and clarify any doubts I had. It was a relief to have someone guide us through this journey, with helpful suggestions, medical advice and reminders. 

When we visited the hospital for each chemo session, we noticed that the other patients were mostly elderly people. Our Manasvi was the youngest. They all appeared shocked to know that such a young child could develop cancer. 

Although these hospital visits made me sad and angry at the same time, I knew I had to focus on her treatment. I had to do everything within my power to make sure my child is fine again. That was all that mattered. 

The endurance

Watching your toddler go through chemotherapy is one of the most painful things a parent can endure. You know that the chemo is important for your child to recover, but watching her suffer from the side-effects is most painful. 

Each time I watched the neon red liquid enter her veins, I sat there next to her on the hospital bed, wondering if I could have prevented her suffering in any way. I think back to every incident from her birth to the present day, wondering if I made any mistake as a parent. 

I keep wondering whether there could have been some neglect on my part that caused my child to develop leukemia. The doctors have explained to me many times that it is not because of anything we did, that cancer can affect anyone. The reasons for this are not fully known to us yet. But still, as a parent, I can’t help but feel responsible for my child’s suffering.

The calm after

The treatment lasted for eight months, till December 2019. Manasvi is currently on maintenance therapy. Post-therapy, she will need a check-up once every three months. Since her immunity has been affected, we need to make sure that she does not catch any infections. 

For this, we need to make sure that our home remains clean and tidy at all times. We don’t take her to busy public areas as the chances of contracting an infection are very high in such places. We make sure that we give her nutritious, home-made food, so that her physical strength improves and she remains healthy.

Words of advice

If you are a parent whose child has just been diagnosed with cancer, I want to share some advice with you, things that I have been able to pick up through our experience: 

• During Manasvi’s treatment, I was constantly thinking ‘will she survive?’ Such thoughts will only distract you from the important things. Don’t overthink. Trust your doctor, and leave the rest in the hands of your god. Then, focus on what you need to do. You need to make sure your child is eating nutritious food so that they are strong enough to endure the side-effects of the treatment. So prioritise on that. 
• The medical reports are the only indicators of your child’s health. So give the reports more importance than the opinions of relatives and friends. 
• Sometimes people end up saying things that cause you anxiety. At such times, you need to remind yourself that only if you are strong, can your child be strong. So take care of your body and mind. While you take care of your child’s meals and sleep, take care of your meals and sleep too. You need to be healthy to be able to take care of your child. 

Each one has to find their own path in their journey with cancer. What worked for one, may not work for another. So find out what works for you and your child. You are the best judge of that, so trust yourself. Of course, it is not easy. Cancer is no child’s play. 

When I started this journey, I did not know what would happen in a few months time. But here I am, a year hence and at a place I hadn’t imagined. As a family, we have seen the worst yet, but we survived it and today I am able to share my story. 

I pray my story gives hope to those who need it, that things can work out in the end. Even if it all looks too difficult and confusing right now, with time, it is possible to overcome anything. We just need to stay focussed and not give up.

*If you have a story to share too, please write to us at community@onco.com.