Meet Ava

This beautiful little girl and her family are a good reminder for all that childhood cancer awareness is not just for September. Children are diagnosed with cancer everyday. These children are fighting for their lives everyday. Some of these children made it to remission and some did not. This is why we raise awareness everyday and more importantly take action each and everyday. After receiving Ava and her family’s story this morning I stepped back out of this crazy life of gossip, stress, and worries and reminded myself once again to enjoy and make memories with those we love. Much love to Ava and her family today and always.

“It was a Tuesday. It was the perfect blend of almost summer and sunshine. My girls were 22 months old and 6 months old. Ava, our oldest, wasn’t feeling herself after the 10 days they asked us to give her following her first appointment. She was flushed, weak, and still having trouble walking. The “virus” that they said she probably picked up earlier that month turned out to be a little more serious than they anticipated . We were told going to the ER would help to get the results of scans quicker since it was now almost 430pm. Over the next several hours, a tumor was located in the base of her skull. My girl had no idea what was going on, but we were together so she knew it would be okay. We were admitted to D7 at 11:50pm, after 6 hours in the holding tank known as the pediatric emergency room. We had the clothes on our backs, a juice cup, one extra diaper, a cell phone with a low battery life, and my wallet. We were together and alone, Ava and I.

The next 17 months of our life would center around treatment to cure Neuroblastoma stage IV, a rare and aggressive form of childhood cancer. Only 700 cases per year are diagnosed and only a fraction of those are stage IV. We centered Ava’s life around keeping her a child. We did everything possible to keep her happy, motivated, smiling, engaged, and thriving. We used speech, music, and occupational therapy professionally but the real therapy required no assistance from outside sources.

We played; finger paints, puzzle stations, markers, sticker art on skin, glow sticks before bed, placing trinkets in varied sized cups, dance parties, water table fun, bubble foam at bath time, bubbles, tea parties. As a mother of a child with pediatric cancer, my full time job became play. I would do whatever necessary to provide my daughter real life in a world which did not allow for her to be exposed to other children, public facilities, or even the outside at times. Fear of sunburn from radiation, fear of infection when immunocompromised, and fear of bruising or bleeding from low counts pushed PLAY into over drive. Ava was always inspired, active, and full of spontaneous play. What she lacked was fun time with her sister, because treatment often did not allow for togetherness.

One summer day at clinic, the Child Life team shared that Ava would be a recipient of Amazing Gracie’s Gift. I didn’t know what that meant, but tears instantly started pouring from my eyes like a faucet. As the foundation was explained, I instantly knew what our gift could be if it was possible. We wanted to get the girls something for them to play with together, but fear of a financial commitment when we had so many other “unknowns” in treatment was scary. Our wish for our daughters was a playhouse. A few weeks later, we had a very large package on our porch with a few other items for our girls. Later that night, the playhouse was set up.

Normally, these types of houses are for outside. But for our girls, we wanted to encourage year round togetherness through all the stages of upcoming treatment. Addalyn, who was only 6 months at Ava’s diagnosis, was now walking (and running for that matter). So here it sits, in my kitchen, large and in charge. It is full of play food, chairs, books, stuffed animals, and beautiful memories.

Ava passed away on September 16, 2017. About 6 weeks ago, my daughters were playing in this playhouse together. This gift from the foundation is more than just a toy. It was the gift of memories. A gift of seeing the joy in Ava’s eyes as she play with her sister. It is a gift of a very warm sensation in my heart, knowing that my daughter lived a life full of fun during her 3 short years. This gift to our children carries beautiful reminders to us as little sister eats her snack in the house and fills her basket with play food. When she opens the windows and looks out, I remember her opening them and looking out at her sister giggling. When I hear the door bell on the house, I remember Ava standing inside and opening the door for her sister to come in. My girls. Always so gentle and full of love.

Saying cancer is hard is an understatement. It takes over the entire dynamic of a family. It forces siblings to be apart from one another. It forces parents to allocate attention to saving the life of their child. Parents, grandparents, aunts, uncles, family friends all help to ensure that the needs of the healthy child remain a priority. The healthy child often gets lost in the shuffle. Our gift was for both of our girls. The memories that Amazing Gracie’s Gift was able to give us will literally carry us through this very difficult time in our cancer journey. Having such extra wonderful memories stare at us each morning while we drink our coffee, or while we cry in private at night while Addalyn sleeps, gives us such comfort. We will forever be grateful for the love we were shown through this foundation. And I, as the quarterback and mother of a child fighting cancer, will forever be grateful for my new friendship with Lisa & Geoff and the legacy that they carry on for their sweet Grace.”

With Gratitude,

Ava’s mom
Leanne Baker

4 comments on “Meet Ava

  1. Leanne you are an amazing Mom and such an inspiration to all, God Bless you and your family, I followe your journey with Ava everyday and i am so bless to know you ,your always in our hearts and prayers,

  2. Beautiful story… sad for the depth of your grief…so happy for the precious memories of such a meaningful gift from others who understand and love others in their painful journey.

  3. You & Amy Parsons have had the same experience. You are both amazing women. So Sorry about Ava but hope Ava & Kathryn are playing in Heaven.

  4. I cannot begin to imagine your heartache. Thank you for sharing your beautiful, little Ava’s journey through this most horrible disease. Life is just so unfair sometimes.

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