Born: September 3, 2008
Diagnosed: January 14, 2013
Died: September 6, 2013
– Silly – Strong – Loving –
Mom, Stefani, remembers: “Brooke was a true spitfire. Loving, silly, strong, beautiful and all in. When Brooke was battling, I became pregnant and she rubbed my belly, through her pain, to connect with her younger sibling she would never meet in person. She was an amazing little girl and I am honored to call her my daughter.”
This week marked the three-year anniversary of the last “normal” night for the Healey family. The last night when little things were blissfully allowed to matter.
“I remember each moment of that night,” recalls Stefani. “I remember Brooke coming to my work before we went to the doctor and running up to greet someone. She ran sideways. It was so odd …”
When the doctor entered the room to speak with Stefani and her husband, it was clear something was wrong — she couldn’t look them in the eye and her mouth turned dry. The neurosurgeon drove in to the hospital from home just to talk to them.
“Still, I had no clue,” wrote Stefani to the Team Brooke Facebook Group. “Looking back I can’t believe I was so stupid. The neurosurgeon came in and told us what was going on, rather bluntly. I kind of understood, looking back. I understood more than I let on. But I didn’t believe it. I still don’t.”
Brooke Healey was diagnosed with Diffuse Intrinsic Pontine Glioma – or DIPG – on January 14, 2013. She was an adorable, silly, intelligent little girl who was perfectly healthy until that awful point of no return, after which she and her mom laid together in a hospital bed.
“I shook uncontrollably,” wrote Stefani. “I knew something was wrong but I calmly tried to rationalize. My body was shaking but I was calm and thinking clearly.”
In the months that would follow, the Healey family would endure radiation for Brooke that would prove futile. The poisonous treatment that buys mere months for some children didn’t work for Brooke. Instead of having a short reprieve, Brooke declined from the moment she was diagnosed until she died on September 9, 2013 – six days after her fifth birthday.
“I can’t believe we actually lived through that,” wrote Stefani. “It’s hard for me to even think about now.
A Wise Soul
At four years old, Brooke was wise beyond her years. When her older brother – 15 months her senior – chimed in during a presidential debate that the name “Obama” sounded like the word “bomb,” Brooke unexpectedly added, “Well, what about Romney? What’s up with him?”
Apparently Brooke was quite familiar with both candidates, to her parents’ surprise.
“She was smart that way,” said Stefani. “Just a wise soul.”
Looking at the beautiful little girl with long brown hair and golden highlights, it’s clear that she had a spark. Silly faces, quirky looks, and a clear intelligence behind the eyes. She also had empathy far beyond her years.
Before she was diagnosed, Brooke made the decision to donate her hair to Locks of Love in honor of her Aunt Caryn. The picture of this precocious child holding up her disconnected ponytail tells a story of a silly, caring girl lost way too soon.
“She’s absolutely adorable,” said Stefani. “I miss her so much.”
Brooke had two siblings when she was diagnosed: an older brother and a younger sister. After learning Brooke was sick, Stefani also learned she was pregnant.
Now, more than two years later, Brooke’s siblings talk about her daily. The family recently moved to a new city, prompting Stefani to call her son’s teacher to explain that he would be talking about his late sister.
“She’s said, ‘Yeah, I know. When he came to visit, we had a circle time with him to get to know him and he talked about her so much.’ So it’s an important part of their lives, and I’m sure it always will be,” said Stefani.
The siblings of children who suffer from DIPG and other chronic illnesses have a special something other kids don’t have. They learn important life skills at a level the rest of us don’t have, life patience and empathy.
Stefani’s children sometimes cry, but will comfort her when they see her struggling.
“I know a lot of families whose children have died from DIPG and the siblings are special,” she said. “They learn important things when something like this happens.”
Getting Through the Pain
The Healey family is coping with their loss through giving back to others. In addition to the foundation they’ve started in Brooke’s name, Stefani visits other DIPG families who are either in the midst of the journey, or who are grieving a loss.
“You are so alone when your child is diagnosed in the hospital with this – you are so alone,” she said. “You don’t know how you’re going to survive, and then the minute you meet the first family who has been through or is going through this, you feel such a sense of relief and comfort.
“After Brooke died, one of the most comforting things to me is visiting with children who are actually going through the journey. I love being with them, seeing them, they’re so special and it’s just so comforting for me to be there for other parents. It’s really a connection that you can’t explain. It’s a deep connection from the moment you meet them.”
The Brooke Healey Foundation builds awareness and raises funds for DIPG research. It also helps families dealing with pediatric cancers — especially brain cancers and DIPG – and maintains a connection to the community through scholarships awarded to civically active high school seniors.
On the three-year anniversary of the Healey’s last day of “normal,” Stefani made a plea to Brooke’s followers on Facebook.
“Live your life like everyday is a gift,” she wrote. “Live it to the fullest. Love hard, work hard, play hard. Cherish your friends and family. Hug your kids. Take pictures. Take videos. My life is changed for ever but I am thankful for our blessings.
“I miss Brooke so much. I still try to live life to the fullest and I hope you do, too. I hope you make the most of your life and I hope that includes spreading awareness for kids who need help. Thanks for still being a part of this ‘Team.’”