The courage to move forward. A dedication which inspires us all. The hope for a better tomorrow. September marks National Childhood Cancer Awareness Month and today the story of one young lady who is finding her way out of the darkness.
The Sunday Series (43): The Lucky One
They say the journey of a thousand miles begins with one small step. For Neha Kundagrami the steps are painful, yet through it all she keeps the faith, keeps her head up, believes she is one of the lucky ones.
It all began with a small bump on the head, one which Neha says she believed was nothing – maybe she bumped her head on her headboard while she was sleeping. What Neha couldn’t know then, from head to toe, her life would be forever changed.
“I kind of ignored the bump at first”, says Neha. “Then it started getting bigger and bigger. We started going to different doctors and the frightening thing was no two doctors concurred and every one said something different.” When some swelling also began on her neck Neha and her family finally visited a head and neck surgeon and he referred them to someone from his graduating class who worked at Johns Hopkins Pediatric Oncology. A lymph node was extracted. The diagnosis: Acute B Cell Lymphoblastic Lymphoma. Lymphoma is the most common blood cancer. Cancerous lymphocytes can travel to many parts of the body and can accumulate to form tumors. Some of the most common forms of treatment are chemotherapy and steroids, but these treatments take their toll.
“This has probably been the hardest on my family and my parents watching me go through this, watching me go through chemo is the only time I ever saw my Dad cry. Plus I have always been deathly afraid of needles. Even at the age of 16 I had to hold my mother’s hand while getting a blood test done, often while choking back tears. So it was with the deepest sense of irony that, (at the age of 16), I was diagnosed with cancer, a diagnosis that inevitably comes with a guarantee of the patient turning into a human pincushion.”
But then there’s the other side effect of chemotherapy which Neha so eloquently explains: “No one understands what it’s like to be a kid with cancer. Ask any cancer patient what the worst part of chemotherapy is and they will not list any of the drugs that they had to take, or any pill, radiation or medication of some sort. Chemo is hard, but it is necessary, it becomes bearable. For almost all the patients the worst part of chemotherapy is the isolation it forces. The patient is forced to spend months at a time either at home or in the hospital, barred from civilization. Without the common distractions, such as a trip to the movies, a day at an amusement park, or even something as simple as having friends over, there is nothing to distract from the discomfort of cancer treatment, which somehow manages to make the treatment even worse.”
But it was visits and spending time at places like Camp Sunrise, the camp for child cancer patients, which gave Neha hope and the realization she was not the only one. Neha saw all these other children going through the same lonely disease she was: “They are kids, but they still managed to be kids despite the cancer, so there is no reason I can’t be.”
At the age of 19 Neha is now finished with the chemotherapy and the steroid treatments which saved her life. But its hold on her life is far from over. Neha describes her journey into cancer as a “long, dark tunnel”, and it took baby steps to realize she could make it through, but the reality of those steps became increasingly more painful. The steroid treatments affected her mobility – in a big way. Her left hip collapsed and cannot be saved. Neha says, “imagine taking a ping-pong ball and running it over with a tractor and then putting it back in. That’s what my hip joint is like, flat.” A recent surgery, a bone graft on her right hip has stopped that disintegration. But now Neha moves about her college campus on crutches, not the easiest of travels and walking will be about the most she will ever be able to do – no running, no jumping, no dancing – just walking – the simple ability to get from one place to another. Yet Neha believes she is lucky.
“For so many kids cancer is their lives, it becomes their lives”, says Neha. “There are cancer patients that will never walk across the stage at graduation, never go to college, never get married or have kids. I’m one of the lucky ones. Two of my friends, Brooke Lauren Shockley and Sarah McMohan weren’t as lucky. They didn’t make it. After all the radiation, surgeries, chemo, spinal taps, and hospital visits – nothing worked. They passed away before they even had a chance to live, and were stripped of their lives and their potential from the raging monster of cancer. These kids are the next generation, and every one of them deserves a chance at life. I can’t do anything about the suffering cancer has put me through. I can’t do anything about the scars it left, or the year I lost to treatment, or the months spent in the hospital begging to go home. But I can work to see the end of cancer. I can work to find a cure, so that children like Sarah and Brooke have the chance to grow past their teenage years and so that no mother goes home to an empty bedroom where her baby once slept. Because you can’t change the cards life handed you, but you can change how you play the hand.”
Neha is taking the hand she has been dealt and doing all she can to live a so-called normal existence. It’s been a long journey out of her tunnel to see the light. But it is this light which kept her moving forward. “I remember after I was diagnosed”, says Neha, “I was told I would be bald, and couldn’t go to school and I collapsed and started bawling. I remember looking up and it was cloudy and stormy, but five minutes later I took a break from crying and I remember looking up again and it was sunny with no clouds in sight. I remember thinking that today might suck, but my future is so bright. I am one of the lucky ones, I realize that now. I may have had more surgeries than I care to remember. I may have had so many tubes sprouting from me that I looked like a blossoming flower. I may have even been so sick I couldn’t even remember what being healthy actually felt like. But I had a cure, a chance to get my life back. I had hope.”
And hope is far from overrated. Sometimes it’s all you have. As the calendar turns from National Childhood Cancer Awareness Month, for so many children with cancer, time seems to stand still. Neha believes so many more advances can be made to better the lives of children fighting to survive. “Cancer advances happen every day”, says Neha. “Targeted gene therapy, nanobots and other new, less painful ways of treating cancer are being discovered every day. But work still remains. There are still cancers for which there is no cure, or cancers for which the success rate is far lower than we would like. And we cannot rest until every cancer has a simple, easy cure, for our job will not be done until no other child has to suffer.”
No more suffering. A chance to become one of the “lucky ones”, like Neha. It’s a chance worth fighting for.
Until next time, thanks for the taking the time
Mark Brodinsky
(In case you missed it from my last blog, there is a brand new song and music video from Sarah Bereilles and Cyndi Lauper, which is raising awareness and dollars to help battle childhood cancer, the song, Truly Brave. The link is below:
Mark Brodinsky, Author, Blogger, Speaker
The #1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
For ideas, comments or feedback on The Sunday Series: markbrodinsky@gmail.com
Follow It’s Just About… Life & The Sunday Series and get an e-mail every time there’s a new post by entering your name and e-mail address above.