Ellora was the happiest baby we’ve known. She glowed with joy and was quick to laugh. Ellie adored being held, hugged and playing peek-a-boo. She was always on the move—first swimming, then scooting and finally crawling to her great delight. Ellie would crawl across our family room to find her siblings and sit down next to them beaming triumphantly. She was adventurous and fearless.
Things changed after her diagnosis of AT/RT at 11 months. She lost her ability to crawl and to babble. She soon stopped eating because of the intense nausea. The chemotherapy she endured was harsh with numerous side effects that kept her hospitalized for months. The trials she went through were more than many of us will ever experience. Yet she persevered.
Ellora became a toddler while at CHOP. She loved to explore her world, whether it was sorting through various medical supplies or gazing out her hospital room window at the cars and pedestrians below. Like other toddlers, she would carefully examine board books and toys and casually toss them aside when she was done with them. We would take her on adventures on the oncology floor to the playroom or go on walks and wave to her favorite nurses. She would be so content in our arms, pointing the way ahead. Ellie loved trying to take things apart and clutched an array of bottles over the last few months, trying valiantly to unscrew their lids. When her hands weakened, she still held on to one, finding comfort in what was familiar.
Ellora loved music. Before she got sick, she would spend a lot of time dancing at her musical table. Ellie’s favorite person at the hospital was probably her musical therapist, who would serenade her each week with his guitar. When she felt up to it, she would shake a little egg rattle that fit perfectly in her hand.
Thich Nhat Hahn wrote, "When you love someone, the best thing you can offer is your presence.” Caring for a sick child is an intense experience. Ellora looked to us for comfort throughout her life, but particularly as she fought cancer. Ellie inspired us with her joy, strength and bravery. Being with her was a sacred gift. We are grateful for the time we had together. We wish we had more. We feel a deep sadness when we hear of other children contracting AT/RT and are proud to be part of the effort to do something, anything, to find a cure.