Ava Rose was born on August 2, 2014. She was a very healthy, playful little girl, growing and learning in all the ways toddlers do. However, when she was 22 months old, she slowly began to change in ways only a parent could notice. She seemed slower and less energetic. She began waking in the night, having low-grade fevers, and eventually started scooting everywhere, instead of her usual walking. Her first ever sick visit was brushed off as a common virus, which the doctors thought may have caused sore muscles. Leanne, Ava’s mom, was advised that if she wasn’t feeling better in 7-10 days to bring her back; by day seven, she had not improved at all. 

At their follow up appointment, they were immediately sent to the local hospital for scans. That was the day Ava’s family learned that their first born daughter had cancer, at which point their whole lives would change. Later that day, they were admitted to the children's oncology floor and would receive a diagnosis of stage 4 Neuroblastoma.  At that time, Ava’s younger sister, Addalyn, was only 6 months old. Leanne recalls that “There are no words for the utter devastation that a parent goes through hearing the words "your child has cancer"-- It's as if the whole world stops and all you can hear is your own heart beat.” 

After diagnosis, Ava underwent the standard treatment for Stage 4 Neuroblastoma. Over the next 15 months, she would undergo a series of chemotherapy, surgery, radiation, and immunotherapy.  She also had a tandem stem cell transplant at Golisano Children’s Hospital in Rochester, NY. Each transplant required Ava and Leanne to be away from their home, their family, and their pets for 30 days. 

While Ava did reach the point of NED (no evidence of disease), she ultimately relapsed at the end of her full treatment plan. Ava’s medical team decided to use high dose chemotherapy to attempt to treat the minimal relapse. Because Ava’s body had already been through so much toxic treatment, the high dose chemotherapy was too much for her healthy, unaffected organs. Her relapse treatment started shortly after her 3rd birthday; she never left the hospital after the chemotherapy was administered. Ava would spend another 30 days in the hospital, the last three of those were on life support in the PICU. Leanne says,”We were able to snuggle her, rock her, sing to her, make her a beautiful playlist of gentle music, and help slowly transition her to a world that we now live without her…” Ava passed away at the age of 3 on September 16, 2016. 

During Ava's last days, her family limited visitors and unnecessary medical staff. They kept their space calm, dark, and filled with beautiful sounds. They had the softest blankets for her and arranged their beds right next to Ava’s. The Child Life Specialist, in coordination with  local Non-Profit groups, helped them create a fingerprint necklace of Ava's pointer finger. They also made a ceramic casting of her sweet little hand and foot. Ava’s family made sure all end-of-life decisions were made ahead of time, so that they did not have to worry about paperwork during their final days with her. The main goal was to keep Ava pain free, which they were able to accomplish. 

Some of Ava’s favorites were Mickey Mouse, painting, and flowers. Her favorite stuffed animal was her Winnie the Pooh stuffy. She lived a life full of love and wonder. Leanne recalls that, “We made it a point to make every day more beautiful than the next because she deserved that. She deserved so much more than what she was given. Our family has suffered an immeasurable loss that we work daily to recover from.” 

Since Ava’s passing, her family has learned to slow the pace of life down. They try to see more sunsets and snuggle longer. Addalyn (Ava’s sister) has taken an interest in art, enjoys being in nature, and animals. The family continues to talk about Ava on a daily basis. Leanne says that grief has been complicated– different strategies have worked at different times. Individual counseling and group therapy have been helpful, as well as meeting others who have experienced similar types of traumatic diagnoses or loss. Ava’s family also makes time to go to the ocean, create beautiful gardens, and paint when they can. Leanne has also found that books about grief have also been essential in learning that what they are feeling is normal, in a world that feels so abnormal.

"Rett’s Roost is a loving and supportive program that makes us feel understood, heard, and supported in all the ways we need. They are so intune with what is actually helpful. We have created long standing friendships and have also been able to refer other families to them as well. I felt blessed to stumble upon a last minute opening for our first retreat. We had 3 days to get ready to go and I'm so glad we made it happen."