It was June of 2006 in Georgetown, TX. My husband Kumar and I had just put up a playscape in our yard to entertain our daughters Monisha (aged 5) and Ishani (aged 3) over the summer holidays. A few days later, Ishani got on to the monkey bars and could not get down. I ran to catch her but it was too late…she fell on the ground. It was quite a hard fall and she complained of pain in her legs and back. While checking her out we happened to find a hard lump in her left calf.
The next day I took her to the local Orthopedist who ordered an MRI which showed a large 5 cm mass in her calf. We were referred to the Cook’s Children’s Hospital in Fort Worth. I remember our first visit very vividly. Sitting in a waiting room with kids with cancer…it hit us hard…it could be us soon….our child might have cancer.
The surgeon scheduled the operation the following day. It was an endless wait in the surgical waiting room – the phone next to us rang – it was the surgeon, “Ishani is doing fine with the surgery, but the frozen section shows that it is rhabdomyosarcoma, I am so sorry.” I will never forget that moment that changed our lives forever.
We came back home the next day and the next two weeks were a blur. We saw the oncologist at Dells Children’s Medical Center; there were numerous MRIs, bone scans and CT scans, port placement and sentinel lymph node resection from her groin. Thankfully the nodes were negative for cancer cells, and the scans were negative for metastases. She was diagnosed with Stage 3 (due to size and location) alveolar rhabdomyosarcoma.
42 weeks of chemotherapy and 4 weeks of radiation followed, with numerous admissions for neutropenic fever. She had problems with neuropathy in her feet and took many a tumble. She did not gain a pound over the year of treatment. We got through it with the support of our family and friends. Treatment finished on April 30, 2007. Scans were negative. She was in remission!
Life got better. Ishani was happy to be a “kid” again. Monisha was happy to have life back to normal. We began to appreciate life in a way we had not done before. The next 18 months were wonderful. Ishani went to preschool in the fall of 2007. She had 3 monthly scans and with each negative scan we breathed a little deeper.
Last summer was the best ever! Both kids learned to swim and play soccer. We took them to Disney World – a trip I will never forget. We got a puppy named Lucky. In the fall of 2008 Ishani started kindergarten. She was so excited. She was in “real” school and most importantly her hair was almost as long as Monisha’s! We started to relax a little more. Her scans in December were normal.
In mid-January this year, Ishani complained of pain in her left groin. When I put my hand on it and felt a lump, the room started to spin. My husband and I just stared into space feeling like we were going to throw up. This time, it was very tender, we had some hope – maybe it was an infection – they thought cat scatch disease. She was given antibiotics and it did reduce, but not completely. On January 20, while the rest of the world watched our new president being sworn in, we sat in the surgical waiting room while Ishani had a biopsy. The cancer had come back. This time there was no treatment protocol. There were no studies proving one drug was better than the other.
She was 6 now. Her needs were different. What should I tell her? How do I tell her she will lose her hair again? How do I tell her that she will miss a lot of her school? How do I tell her she needs her port back again? How do I tell her she has cancer again? I guess for the second time, I underestimated the strength of a child.
Back to scans, port placement etc. The PET scans showed regional recurrence. They recommended chemotherapy first. After 2 cycles, thankfully the mass was not palpable. Repeat PET showed minimal residual disease. We opted to have the residual node taken out, so back to Cooks’ Children’s Hospital. It was hard sitting in that same waiting room where our journey first started. We have completed 5 cycles of chemotherapy and 2 of 5 weeks of radiation. The journey continues. We have been lucky to have been surrounded by so much love and support.
Through all of this Ishani has remained strong and has not lost her smile. She enjoys each day the best she can. She does tumbles and flips on the monkey bars when her platelet count is low (while I am having anxiety attacks), and runs 12 laps at school to keep up with other kids while she is anemic. She was so proud of her hair when it grew back the first time – it was hard for her to lose it again. Yet she has been brave about it and just recently started going out without a hat on. She protects her older sister (who is quite squeamish when it comes to looking at blood!) by hiding from her anything that might scare her. She gets her neulasta shots bravely even though she says that it is the worst part of her treatment. She stays still in a dark room alone for her radiation without complaining. She misses out on a lot of things that other kids get to do. She has been through so much in her six years of life, yet no one can tell.
In March this year, I gave copies of the book “Alex and the Amazing Lemonade Stand” to both my kid’s teachers and the library. It was a story that had inspired me and I needed to share it with others. The book was read to all the classes by the librarian and a few weeks ago, during the book fair, the school hosted their first “Ishani’s Alex’s Lemonade Stand.” It was a success and we raised $500 and more importantly increased awareness of childhood cancer. I hope this is the first of many in Georgetown, TX.
To Ishani - For the challenges that you have bravely faced at such a young age - We love you very much. YOU ARE OUR HERO! – Mom, Dad and Monisha
Written by Dash Wallooppillai, Ishani’s Mother