She was a happy and easy baby. She loved avocado and salmon and rarely wanted candy or junk food. She preferred reading coloring and snuggling with her parents or stuffed animals to television or loud toys. She was loyal to her lambie- her cuddle she had from birth who went every where with her and she was sure was never left behind. Mirah was loyal, loving, caring, and kind to all things from people to animals, plants and the environment. She had a smile and giggle that was contagious and lit up the entire room. She was nicknamed “Sunshine” at her preschool.
Mirah was very protective of her pets and her little sister Hanna. She told Hanna not to be scared because the world was a good place. She read to her little sister nightly. Mimi loved going to school. Her kindergarten teacher said that she was her helper, often teaching the other students to read. And joked that she would frequently have to remind herself that Mirah was only 5 because she seemed in many ways to be an “old soul.”
Everyone who met Mirah was enamored by her intelligence, beauty, loving and kind character.
Mimi wanted to be Princess Aurora for Halloween 2018. Shortly after, we noticed that she was more tired then usual. And when tired, she was more clumsy, like tripping on her own feet. At first, we thought maybe kindergarten (without naps) and daylight savings all just were hitting her hard. But by thanksgiving when she was able to rest more being off school and it still wasn’t helping with her symptoms, we decided to take her to her pediatrician November 29th.
Her Doctor agreed to check labs and an MRI but didn’t think Mirah looked especially concerning on exam. Nonetheless, I was now increasingly anxious and so had both tests completed the same day. When the radiologist came back to the imaging center after already going home for the night and asked to speak with me that Thursday evening, my heart sank. The Doctor told me that Mirah had a tumor of the brainstem called Diffuse Intrinsic Pontine Glioma (DIPG). Despite being a physician, I had never heard of this. But I could see the huge tumor in her brainstem. Even still, I assumed we had a long road ahead of us. I assumed there would be surgery, chemotherapy, radiation...something/anything.
When I read about DIPG that evening, a very large part of me died. And when we met with pediatric neuro-oncologists at Johns Hopkins the next day, our worst nightmare was confirmed. There are currently no good options available and definitely no cure for these innocent kids. Our beautiful child who never caused me a day of trouble in pregnancy or during her short life, was given a death sentence.
None of the treatments offered for DIPG seemed to provide enough quality of life to justify whatever limited quantity they may add. Even with treatment (including palliative radiation and experimental drug trials), DIPG kids live only on average of 9 months from their D-day (diagnosis day). This was not acceptable enough of a benefit to put our perfect beautiful innocent child through. And so to the surprise of many, we made the impossible decision for comfort care only and returned home refusing any medical treatment.
Hospice of the Chesapeake for kids was wonderful. Mirah died at home in our arms as peacefully as possible on December 21st, 2018. Just three weeks after her diagnosis with DIPG. And just 10 days before her 6th birthday.
Our hearts are broken and our lives will never be the same. As we struggle to find our new normal without our precious Mirah, we want more than anything to keep her memory alive. One of Mirah’s best qualities was her generous and deeply caring nature. She was definitely a “shirt off your back” kind of gal and never wanted any child or animal to suffer. Her make a wish was to get a puppy. And her dream in life was to become a teacher.
In carrying on Mirah’s spirit, we are honored to partner with the Blue Ribbon Project in opening Mirah’s Closet. We hope to provide Maryland’s foster care youth with clothing, shoes, coats, and other necessary gear so that they feel loved and cared for no matter what transition they may find themselves in.
We thank you for your support of Mirah’s Closet and for reading about our precious Angel Mimi.
With much love and respect,
Hanita and Mandeep Chhabra