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Submitted by PatientsEngage on 25 November 2019
A young boy in navy blue pants, and blue, red and white jacket and red and white shoes sitting on the green grass and looking up at the camera

Atharv, 7 was diagnosed with Osteosarcoma (bone tumour). His mother Nisha Dubey shares how the young boy soldiers on positively after a rare surgery, coping with the challenges of chemotherapy with the support of family and friends.

Nisha, tell us about Atharv's diagnosis?

My son, Atharv was diagnosed 2 years ago (he was 5) with Osteosarcoma (bone tumor) in his proximal femur (thigh bone).

What were the early symptoms? What made you go see a doctor?

Once while watching TV, he suddenly complained of pain in his knee. We thought it was strain from his Taekwando class, so I gave him a painkiller. The pain did not subside and so I took him to a hospital thinking it may be a fracture. X-ray was normal and we came back home with more painkillers. After a week, again he complained of pain and a hospital visit was repeated. I was nine months pregnant at the time and soon delivered my baby. After her birth, Atharv started complaining of pain more frequently.  Pain would start during the day and get worse at night. Many people told me it may be psychological because of the new baby, but I knew that if he wanted attention, he would not be willing to go to school then. In his case, there was no swelling so multiple biopsies were done on the knee but nothing was found. While investigations were going on, he insisted on attending school. A whole month passed.

One day he just could not get up. We suspected it was osteomyelitis and got a pelvic MRI done. He was found to have a 9cm osteosarcoma in his proximal femur. It was high-grade and at stage 2. Chemotherapy was prescribed as the first line of treatment. After his first cycle, he had major side-effects and his dose was reduced by 25%.

Love, Courage And Drawing Cartoons Helped Me Cope With Osteosarcoma

The 2nd line of treatment was supposed to be surgery after the tumor had shrunk in size. However, when they did the CT scan after 3 months, they found it was not a feasible option. They cancelled his surgery and suggested we try a new type of Endoprosthesis by a UK company. When I contacted the UK Company, they told me it was not applicable for a 5 year old. At this point, we went back to consult the surgeon who had done his biopsy at a private hospital. He told us that the kind of tumor that Atharv had was rare and hence surgical procedures were not commonly done. He told us about an option called Rotation Plasty type 2 which is a functional amputation where the femur and knee are resected, foot is rotated 180o and re-attached so the ankle becomes the knee joint. This is a rare surgery for children very young and can have a strong psychological impact on the child. Our only other option was a full amputation!

We decided to go for the Rotation Plasty. It was an arduous 13 hour long surgery. He was put in a full pelvic-to-leg cast for 8-9 months after that. He also had to finish off his chemo cycles in this period. Moving him around in his cast as very tough, he could not even sit. He spent nearly 10 months lying in bed in a single position without even turning or sitting.

What is his present condition?

He does his physiotherapy exercises with me every day. He can only wear his prosthesis for an hour or so because it is painful. He wears it when he wants to play cricket. My husband takes him to school once a week and I do some homeschooling with him. He scores well in his exams which surprises his teachers. His school has been very supportive to us.

What treatment/medications is he on currently?

Currently, he is on no medications except painkillers if required. Since the past year, he has had no treatment. During his last few chemo cycles, we were told that his cancer has spread and they want to continue Chemo. But Chemo had given him so many side-effects. So we took a call, and decided not to pursue further Chemo and only focus on pain and symptom management.

His reconstruction surgery has also failed because some screws have loosened up and need to be re-fixed. However, we don’t want to subject him to another surgery and prolonged anesthesia. After his last surgery, he was on epidural continuously for 8 days and even then he would be screaming with pain. He was even on morphine for a month and a half. He has already had his fill of pain and anesthesia for a lifetime.

Were there any side-effects of the medicines? If yes, how do you manage them?

As I mentioned earlier, he had very poor tolerance to Chemotherapy so he would get frequent and severe side-effects. These included vomiting, diarrhea, bleeding, low blood count, high grade fever, drop in platelet levels etc. He spent a lot of time in the Pediatric and Emergency ward because of his side-effects. We often got sent home because there would be no beds available. Since my husband is a Dentist and I am a Homeopath, we were able to manage most of his symptoms at home.

Did you have to travel outside your city for your medical treatment or consult?

At the time of diagnosis, I had got a second opinion from Tata Memorial Hospital in Mumbai. However, Atharv was in no position to travel.

What changes have you made to your lifestyle because of your son's condition?

We have had a tough ride medically and financially these past two years. My work has completely stopped; my husband also had to cut down on his working hours because there is no other help at home. We had reached out to several NGOs but never even heard back from them.

How did you mentally/emotionally cope?

Atharv has been a very brave boy! I sometimes wonder how he has put up with all the pain, side-effects, the traumatic surgery, or the drastic changes in life. He often feels helpless and we have come across some mean and insensitive people. I used to cover his legs when we went for Chemo to avoid the stares and questions. He himself has asked why people don’t respect the differently- abled. I sometimes forget he is only 7 years old!

He has an amazing spirit and awareness. Undergoing so much suffering at such a tender age has made Atharv very compassionate and filled him with more love. He has seen many kids suffering during his long hospital stays and visits, and now wants to help other kids battling for life. He has been saving up this past year to buy something but after seeing other kids at the hospital suffering, he decided to donate it to them. We went across to the Shelter home opposite the hospital and met children who were struggling. His aim is bring smiles to few kids battling with life threatening conditions through an initiative called “The Little warriors”. He is also persuading kids who have undergone amputation or lost vision to continue school. With support and motivation his small steps can reach and inspire many lives.

I try to keep encouraging him anyway I can. He loves playing with toy soldiers, so I wrote to the Indian Army and they responded by inviting Atharv to the Rajputana Rifle Regiment and even honored him an army uniform. Akshay Kumar has been his inspiration; he was just 5 and about to get his first belt in Taikwando when he fell ill. He also responded to my email and came to meet him. Virat Kohli sent him an inspiring message to continue playing cricket. Such affirmative events have kept us going! We are trying to stay strong and positive!

Don't miss his video at the end of this article

Did you see a counselor for support? Were you offered counseling by your doctor?

Before his surgery, we had to tell him about what was going to happen. No counselor was provided to us so I had to counsel him. I showed him a video and told him about his options. He understood that his leg was going to be shortened and went to the OR smiling. Post-surgery he did ask why it was so much shorter and inverted. We told him there was no other option. He has since never questioned it, he has displayed such understanding and maturity for his age.

How has your family supported you?

My mother has been my biggest support. She moved in and took care of my newborn for a whole year while my husband and I were running around with Atharv.

How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?

Initially, we were very cut off and I didn’t have the time to call and tell our friends. Also we were told that he could not have any visitors during his early chemo days. When we needed blood, we got a great response for blood donation from my husband’s friends. Even my local pharmacist has been very helpful; he often comes home to babysit the kids.

What is your advice to patients who face similar challenges?

My advice would be to stay strong, happy and always give your best. Don’t get scared and believe in God. God has a plan for every tomorrow.

We just focus on living each day and try not to think about what may happen.

Together lets make an Inclusive Society- A Better World.

Atharv is on a mission of sharing pain of other little warriors battling for life. Driving energy from his extreme struggles he is motivating and inspiring others to keep going strong. He has witnessed the physical, emotional and social issues of being disabled at an a tender age.
But he is very positive and says ...every child deserves to be happy, deserves to be respected and treated equally. Rich-poor, healthy-sick, abled-disabled...together lets make an Inclusive Society- A Better World.
To fulfill and support his sweet and selfless wish there is an event  'Lifeathon' in Noida on 15th Dec. 
Support and encouragement will help Atharv to go a long way and positively change many lives.

Update on 25 Nov 2019: 

 

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