After Little Girl's Cancer Was Found, Community Hopes for Miracle with Pink Ribbons
5-year old Brooklyn Smith is a very knowledgeable child. She knows all about how she got sick and went to the hospital. She knows about the shunt that doctors put into her head, and can tell anyone how it works. She knows that she can't go to school right now, but she likes video conferencing with her teachers. She named the Monkey in My Chair - part of a program to keep cancer patients connected with their classmates - Sunshine, and is happy to see Sunshine sitting in her chair, reserving it until she comes back.
She likes to participate via FaceTime with the music and lessons at school.
Brooklyn likes Barbies, ponies, princesses, fairies, her dog Lulu, and playing dress-up. She likes having fun with her mom and dad, Brittany and Nick. She is a normal, happy little girl except for one thing.
Brooklyn Smith has Diffuse Intrinsic Pontine Glioma (DIPG), difficult-to-treat brain tumors that strike young children.
On Saturday, Brooklyn found out that her entire neighborhood thinks that she is a special little girl, with many people turning out in the Lakemont subdivision in Erlanger on a chilly morning to tie pink ribbons with Brooklyn's name on them around trees and poles and their arms and everything else they could find so that they could let Brooklyn and her family know that they care, and they want the very best for Brooklyn.
Erlanger Mayor Tyson Hermes and several city council members came, as well as firefighters, police, and administrators.
"The entire community is putting the ribbons up," said Scott Smith, Brooklyn's uncle. "All the trees, all the light poles, and even their personal light poles. It is amazing how people have gotten behind this. It may be not just a Lakemont project, but a Northern Kentucky project."
Brooklyn celebrated her fifth birthday on January 11. Seven days later, while in preschool at St Joseph's Academy, the Director, Rhonda O'Leary, noticed that Brooklyn was carefully enunciating her words, and one of her eyes was straying towards her nose. O'Leary wasn't sure what was going on but she knew this was different and contacted Brooklyn's parents. That same day Brooklyn and her parents were at Children's Hospital hearing the words no parent wants to hear: their daughter has cancer.
DIPG is the same type of cancer that Lauren Hill, the teen basketball player-turned-local hero, worked so hard to bring awareness to before her death from the disease. Seven days after celebrating their little girl's fifth birthday with a princess cake, balloons and presents, Nick and Brittany's world came crashing down.
"Brooklyn had to have a shunt put into her brain to drain the excess fluid off," explained Scott Smith. "Then they put in a (catheter) which goes directly into her blood so they don't have to stick her every time she gets a treatment. She has about two more weeks of radiation treatment. She is a little trooper, though; she doesn't complain although the treatments make her tired. Because of her (catheter) and the treatments, she can't be exposed to people right now due to infections."
With DIPG, brain tumors are found at the base of the brain stem where the basic functions of breathing and swallowing exist, along with muscles that help with speech and eye movements. It is a high-grade glioma, which comes from the glia cells which surround and protect nerve cells in the brain. DIPG is usually diagnosed in elementary school-age children, but it can occur in children of all ages.
DIPG tends to grow fast, and most patients are diagnosed fairly quickly, with the help of an MRI. Early warning symptoms include changes in facial or eye movements, trouble moving one side of the body, and difficulty in speech, although these warning signs could signal other problems, too.
Treatment options are unfortunately limited because the tumors can't be removed surgically due to their location. Radiation shrinks the tumors to give the patient more time, but there is no cure for DIPG. Research has given doctors new drugs to try, and that is leading to clinical trials, which everyone is hoping could lead to a breakthrough.
An average of 250 children are diagnosed with DIPG each year.
Smiles for Brooklyn, Inc, a new nonprofit organization, has been set up through Huntington Bank to help the family with the expenses of having to fight this disease. Lynn Mokrovich is the secretary of the charity, and they are planning fundraisers for the medical bills.
"The Make-a-Wish foundation is going to send Brooklyn and her mom and I to Disney World in a few weeks," said Nick Smith, Brooklyn's dad. "Then in April she will begin a clinical trial with a new drug. Cincinnati Children's has been a great support. We have told Brooklyn everything they said she would understand at her age."
Brooklyn's grandparents, Phil and Jill Smith, were at the ribbon-tying event. Pink ribbons were chosen because pink is Brooklyn's favorite color, and that was the only color she wanted.
"We were devastated when we heard," said Jill Smith. "We have two grandchildren, Brooklyn and her cousin Jeffrey, who are not far apart in age. The Make-a-Wish foundation is involved, and with everyone praying and supporting her, we are hoping that will be our miracle."
Nick Smith's grave face mirrored the personal agony he and Brittany are going through.
"I can't tell you, there aren't words," he said softly. "She is our world."
Story & photos by Patricia A. Scheyer, RCN contributor
Top photo: Kelly Eilers and Griffin, 10, tie their ribbon.