A Legacy of Love at Baystate Children’s Hospital: Max Preston’s Story

When you enter the Baystate Children’s Hospital, you may notice a beautiful tile tree, spanning the wall and enveloping a window. The area welcomes families, patients, and team members to sit and have a moment of peace. This special space was created in memory of Max Preston, who passed away in 1998 after a courageous battle with cancer. Now, his legacy lives on and provides comfort to those who enjoy this special space.

Creating Home Away from Home

When Max was two years old, his doctors found he had a large tumor. Within the span of two months, they discovered multiple additional tumors and Max was diagnosed with stage 4 cancer.

“It all happened so fast, and we had that feeling of ‘what just happened to us’,” described Max’s Mom, Nicole Preston-Cullen. “Max’s Dad, Rusty, and I were catapulted into a role that no one’s ever ready for, and we had this new extended family of doctors, nurses, surgeons, oncologists, and child life specialists who became such a big part of our lives for the next year and a half.”

Max began treatment, spending long spans of time at Baystate Children’s Hospital.

“We just made it part of our lifestyle there. There weren’t TVs in the rooms like there are now, so his grandparents bought him one of those old TVs that you could play VHS tapes on, so we’d watch movies and people would visit,” said Nicole. “It just became our home for weeks at a time and we just made it part of our life.”

As a result of so much time being spent at Baystate Children’s Hospital, the family made unbreakable bonds with the team members who were taking care of Max, especially Child Life Specialist Rachel Alley.

“I remember Max riding his bike down the hall with his IV behind him and the moments like that were so special because they try to make it as normal as possible for these kids,” said Nicole. “The people that we were there with, like Rachel, just became part of our family, and they still are today.”

Child life specialists are trained professionals with expertise in helping children and their families overcome some of life’s most challenging events, including explain the care process and what to expect during time at a hospital in terms children can understand.

“As a child life specialist, I try to support patients and families through some of their most difficult times but also to celebrate their spirit and embrace being a child and family,” said Rachel. “It truly is an honor to walk beside the children and families that I work with as they each experience their own journey. Max, Nicole, and Rusty allowed me to hold that space with them.”

Unfortunately, after a short remission, Max’s cancer returned, and he passed away in August 1998.

“It was really the hardest time for us [after the remission] and we were making these decisions in the thick of it, but throughout it all, the people we had at Baystate were so amazing – and still are to this day,” said Nicole.

Healing Together

As the result of Nicole and Rusty’s friends putting together a fundraiser for the family, they had some extra money left over. After Max’s passing, they wanted to do something special to honor him.

“At the end of the hallway on the fourth floor is where him and I would sit most of the time when he was able to get out of his room,” said Nicole. “We would just look out the window and just escape the room. It was so nice. So, we decided to create a space that others could enjoy the same way we did while in the hospital.”

Eleven years later, Nicole welcomed her daughter, Parker, into the world. When Parker was young, she had a short stint at Baystate Children’s Hospital. Nicole was able to share a special part of her brother with her at that time.

“I brought her over to her brother’s window and said ‘do you know what this is honey? This is what you’ve heard about – a special place we shared with Max’,” said Nicole. “The beauty of this space is that people will come up to me to this day and say, ‘You’re Max’s Mom!’ and share their experience sitting there and it brings my heart so much joy.”

Max’s legacy also lives on with a special recognition through Griffin’s Friends – the Max Preston Award. Griffin’s Friends is a group of volunteers dedicated to providing support to children with cancer through the Griffin’s Friends Children’s Cancer Fund at Baystate Health Foundation. Max’s family was one of the first to work with the group, and now the Max Preston Award is a way to celebrate Max’s legacy. The last person to receive the award, prior to a pause due to COVID-19, was Rachel Alley.

“I was able to get up and share this amazing story about Rachel and how important child life specialists are in these children’s lives,” said Nicole. “And, knowing that she’s a part of our family all of these years later, it just makes my heart feel so good.”

The memories also have stay strong with Rachel.

“I remember Max in his overalls at Griffin's Friends events, his excitement when extended family visited him in the hospital, his parents’ incredible strength, and of course he and Nicole sitting in the Max's Corner window,” said Rachel. “ I still spend time in that window seat with children. We count the cars outside, look at the birds, or just sit quietly. And while there, I am often blessed with a memory of Max and his family. "

Thanks to Nicole and family and friends, Max’s legacy lives on and makes the hearts of so many feel good as they take a moment to look out the window while enjoying Max’s Corner, as she did all those years ago.