Lara has always been a kind, loving and considerate little person. Her principal once described her as a “ray of sunshine.” She is the little girl I always dreamed of having; the little girl who loves tea parties, playing dress up, and wearing makeup; the little girl who loves dolls and stuffed animals, dancing and singing, ballet and gymnastics. She is someone who adores her friends and loves pretending to prepare food in her play kitchen and set up “feasts” or parties for us.
During Spring Break this year, I noticed a change in her handwriting while she was working on her homework packet. Within the next week, she developed a limp. Now panicked, I rushed her to the ER. The CT scan done in the ER immediately showed a brainstem tumor and my family’s world just shattered.
A subsequent MRI was done that showed that the tumor had the typical characteristics of a DIPG (diffuse intrinsic pontine glioma). The brainstem is responsible for controlling many of our vital functions such as breathing, heart rate, vision and hearing. Due to the location of the tumor and the type that it is (it is woven between healthy tissue) it is inoperable.
The oncologists discussed treatment options with us, including radiation and clinical trials since there is no known cure for DIPG. Children with DIPG have a dismal prognosis, roughly 9-15 months, and radiation is considered to only provide them with a few months of symptom improvement.
The past three months has been a terrible blur of radiation treatments and a desperate search for alternative treatments. We have watched over these few months as our six year old princess lost one sense after another including her sunshine smile. She can no longer walk and has lost the use of the right side of her body. Every moment with our daughter has become both heartbreakingly precious and painful. As many have said before, it is the worst kind of pain to watch your child suffer.
But, we are refusing to give up hope. We have researched treatments in the U.S. and abroad that show promise in treating this terrible disease, but these treatments are not covered by insurance and can be quite costly. I have had to quit working in order to take care of our little Lara. With only half of our regular income, we are now struggling to pay our monthly bills, let alone afford the treatments we hope to give our daughter.
I know times are tight for so many people right now, but any little bit of support you can give us would go towards medical support and help tremendously, and we would be forever grateful! God bless you and yours, and thank you!
-Latika & Asheesh