Gilda’s Club Grand Rapids becomes life-raft for family struggling with 5-year-old’s eye cancer
At 6, Meredith Veenstra has got it all going on: the wide grin, the missing two front teeth, the “bring it on” confident pose on the first day of school.
Life is good.
She and her family are due: They have been through hell and back in the last year.
Just a week after her fifth birthday, Meredith developed what look like pink eye.
Visits to her pediatrician and an eye doctor revealed she wasn’t seeing anything out of her left eye, and in an immediate followup, an ophthalmologist diagnosed a cancerous tumor.
She was referred to Dr. Thomas Aaberg, an ophthalmologist with a subspecialty in eye tumors and cancers.
Fate set the appointment the same day mom Bernadette was scheduled to have surgery to repair a torn knee ligament. Left untreated too long, it would become permanently debilitating, but putting her surgery on hold was a no-brainer.
“Even before this, we’d been thinking of our priorities: God, our marriage, our kids,” Bernadette said. “When you are in survival mode, it’s pretty easy to see your priorities.”
Aaberg diagnosed retinoblastoma in Meredith — cancer of the eye. The aggressive cancer had taken over the left eyeball and was moving fast up the optic nerve.
A new eye for Meredith
Meredith’s left eyeball and portions of the optic nerve were removed on July 11, 2016.
Her parents simply told her the doctor would give her a new eye.
“We thought it was too much to handle at 5 to be told your eye was being removed.”
An MRI after surgery showed Meredith was “essentially cancer-free,” but chemo was recommended to help ensure against any renegade cells moving to the other eye and brain. She did 6 rounds of out-patient chemo at Helen DeVos Children’s Hospital.
“From the day she was born, she has been a vivacious, happy kid,” her mom said. “But the chemo messed with her emotions.” It made her sad and it made her cry, despite the best efforts of the Child Life Specialists at the hospital.
While the term “cancer” doesn’t mean anything to a 5-year-old and fear has no context in experience, uncertainty gets to the youngest among us.
The staff at Helen DeVos would explain what was happening in Meredith’s language – showing her what to expect using a chest port on dolls, explaining, for example, that saline would be part of the routine to “give your port a drink.”
With time spent hydrating Meredith’s tiny body, chemo days could be 9 or 10 hours long — exhausting everyone. Between doctors’ appointments, home schooling and trying to “spend quality time not related to cancer, there was a lot of stress and strain on every member of the Veenstra family.
Giving when you have no more to give
“It was very challenging, and at times I would feel ‘I don’t have any more to give to anybody else,’ but you have to.”
Bernadette and Brian Veenstra “knew we needed support — because of our other kids” — Brian, now 15; Ethan, 13 and Elsie, 10.
“The fact that they had different groups for all of our kids was huge,” Bernadette said.
Two days before Meredith’s surgery, they all visited Gilda’s: the boys went to the Teens and Tweens group, Elsie to the Kids, and Meredith to Noogieland.
“All of them were excited to go, and we went the second and fourth Thursdays at least twice month from August 2016 through the beginning of June of this year.”
She talked enthusiastically about the emotional coping skills the kids learned.
Finding understanding in shared experience
“Their friends couldn’t really understand. The groups gave the kids an opportunity to talk with people who all understood what they were going through; it helped them feel normal — that they are not alone.
“I think kids generally act out when they don’t understand something, and this gave them a place to be heard. There’s a tenseness that you feel, and we all could let it out there.
“It gave Elsie a place she could be herself and Meredith loved having a place to just play.”
Bernadette and Brian joined the Family and Friends group.
“We would share what was going on with our cancer person, and how it was affecting us. Gilda’s gave us a safe place— to “share what we were feeling and nobody felt they had to fix us or provide solutions.
“We all need a place to be heard, and to know it’s OK to be hurt, angry or stressed. The thing is, Gilda’s doesn’t leave you there. You talk about how are you going to take control of your emotional health.
“Gilda’s lets you spew the garbage and leave it there.”
“I learned that just listening to someone and not to try to offer your experience — Just to say ‘I hear you,” is really important.”
Offering “solutions” doesn’t help.
“I believe God brought cancer into our lives for a reason- but I haven’t a clue why,” Bernadette said. “. “There’s a tension, but I am trusting in His goodness.”
To date, Meredith’s follow-up screens are clear.
And Bernadette’s knee surgery?
Necessity moved it up the priorities list, and two days after Meredith’s surgery, Bernadette had hers.
“They told me I couldn’t care for Meredith if I didn’t get my knee fixed.”
Lessons from the last year
- Going back to basics to deal with the tough stuff: “I bring life back down to the bare minimum basics: I focus on God, my husband and kids, and relationships. I invest in relationships rather than just activities.”
- Complaining is a dead-end street: “Now it feels that if you don’t like something and have the power to change it, change it.
“Shut up or put up.”
- Giving back is part of healing: Although the Veenstras no longer attend group meetings, “we’re all on Gilda’s meal team. It’s another step in the healing process. Now it’s time to give back.”