It was a new year like no other. One that would change a family’s life forever.
On Jan. 5, 2022, after a visit to the family pediatrician showed something not right on a chest X-ray, Jennifer and Mike Weis drove their daughter, Ava, to the emergency department at Spectrum Health Helen DeVos Children’s Hospital.
Ava, 10, had seemed tired and not herself for quite some time, but there were no other major symptoms.
The family soon met with Beth Kurt, MD, section chief for pediatric oncology at Helen DeVos Children’s Hospital.
Scans identified three tumors on Ava’s body—one at each of the lymph nodes near the collar bone, and one in the middle on her trachea.
“It was a lot, really fast,” Jennifer said.
The care team inserted a PICC line in Ava, giving doctors access to the large central veins near the heart. Just days later, she would start chemotherapy after being diagnosed with early stage 2A Hodgkin lymphoma.
“I really feel that it almost was a miracle because she was not that sick,” Jennifer said. “She had cancer and we didn’t even know.”
Their lives changed in an instant.
“It was scary, terrifying really,” Jennifer said.
Ava took the news calmly and told her parents she didn’t even feel sick.
“She’s a pretty black-and-white person, and she wanted to wrap it up and go home,” Jennifer said. “But there’s so much you can’t control when you are sick.”
The oncology team planned for Ava to stay at the hospital for the duration of chemotherapy, but she wasn’t up for that.
The Weis family lives just 30 minutes from Helen DeVos Children’s Hospital, so they opted to make the drive to Grand Rapids for outpatient treatment three days a week.
“She had little to no side effects from chemo, which was great,” Jennifer said. “She just wanted to play the guitar and be at home with her cat.”
Motivated and musical
In early March, during a visit to the children’s hospital, Ava caught up with Dr. Kurt.
“Next week will hopefully be her last round of chemo,” Dr. Kurt said. “We have to do some tests first.”
The treatment—a combination of six different chemotherapy medications delivered over one week every month—is for patients with intermediate risk Hodgkin lymphoma, Dr. Kurt said.
“She has done really well with her treatment thus far and, after two cycles, was found to be a rapid responder,” Dr. Kurt said.
The doctor remained hopeful Ava would see a good outcome with additional treatment.
Amid it all, Ava has been a rock star, Dr. Kurt said.
Ava convinced her parents to allow for treatment in the outpatient infusion clinic, rather than inpatient.
“She is highly motivated,” Dr. Kurt said. “She drinks a whole liter of water before treatment and gets up early to get it all done. Not everyone can do that. She’s taking responsibility for her own health.”
Ava chatted with her parents and Dr. Kurt for a bit as the chemotherapy wrapped up that day.
“What do you want to be when you grow up?” Dr. Kurt asked.
“I’m thinking of being a vet or an animal trainer,” Ava said. “Or opening a dog bakery. A ‘barkery,’ where we would make snacks for dogs.”
She gains much inspiration from music therapy, too. She aims to play every time she’s at the hospital.
“I like Taylor Swift and Adele,” she said. “I’m getting pretty good at, ‘You belong with me.’ And I even have an electric guitar at home.”
“We’re really thankful for her care team,” Jennifer said. “Doctors, nurses, music therapists … they have all been amazing. We have so much trust and faith in them.”
Ollie and Caramel Willy
Fast forward a few months.
After several rounds of chemotherapy, Ava felt decidedly better.
“Ava has been unbelievable,” Jennifer said. “She has had a better attitude than anyone in our family.”
She’s been on a swim team since age 4, and as soon as she can get her PICC line out she plans to get back into the water.
At home, you’ll find her playing guitar and snuggling up with her cat, Caramel Willy.
“We had a lot of names for him at first,” Ava said. “He was Kit Kat at first because his fur was so dark.”
Ava said Caramel Willy got stressed and ate more during her time away at the hospital, and he’s now the size of a small lion.
“He was my therapy cat,” she said. “But sometimes it was the other way around. I was his therapy person.”
Ava’s dad, Mike, accidentally promised her a dog during treatment.
“Dad said you’re allowed to be sad, and you’re allowed to be mad,” Ava said. “But if you try your best, you can have a dog.”
When the puppy arrived in May, it immediately lifted Ava’s spirits.
“All I have ever wanted is to be a dog mom,” she said.
The English shepherd, Ollie, is just 15 weeks old.
“He’s been a handful so far,” Jennifer said. “But Ava is so happy and having an awesome time with her puppy.”
Scans showed Ava’s tumors indeed decreased in size.
But she would need additional therapy.
During Ava’s journey, Spectrum Health and Beaumont Health integrated into one BHSH Health System.
Dr. Kurt reached out across the state to her new physician colleagues to help find the best treatment for Ava. This new connection made treatment more seamless, offering additional care opportunities.
Dr. Kurt and physicians at Beaumont Health determined proton therapy might offer the precise treatment needed to knock Ava’s cancer into remission. And lucky for Ava, Beaumont Health’s Proton Therapy Center is the only center of its kind in Michigan to treat pediatric patients.
Ava and her mom stayed in Detroit for three weeks in May, visiting the hospital five days each week for precision radiation therapy. Each treatment session lasted 30 to 40 minutes.
“Ava has been super resilient, of course,” Jennifer said. “But she did not want to go at first. We couldn’t promise that this would be the end of therapy, but we are indeed hopeful.”
Proton therapy radiation is more focused on the tumor itself, delivering less radiation to normal, healthy tissue around the tumor, Rohan Deraniyagala, MD, clinical director for the Beaumont Proton Therapy Center, said.
“This means that proton therapy would have less side effects than conventional radiation,” Dr. Deraniyagala said.
Ava has lymphoma of the neck and chest, between the lungs, so conventional radiation targeted at these areas could have affected her heart, throat, lung and breast tissue.
The treatment was painless, and Ava said it only made her feel a bit tired.
With proton therapy now completed, she must wait three months. She’ll then undergo a PET scan to check her progress.
Doctors remain optimistic about her recovery.
“What we want to make sure of is that, as she grows into an adult, (she) has a normal, healthy quality of life,” Dr. Deraniyagala said.
Up in a treehouse
Following the treatment at Beaumont Health, Ava and her mom returned to their Spring Lake home, where they were greeted by Mike and Ava’s sister, Abigail, and an eager Caramel Willy.
And the new puppy, Ollie.
Now that radiation therapy is completed, Ava has no additional planned therapy. She will continue to undergo surveillance with check-ups and imaging.
But Ava and her family aren’t ones to stay put and wait things out.
When they returned home, the Weis family packed up and headed to the shores of Lake Michigan, where they spent a long weekend at a treehouse on stilts, overlooking a bluff.
Camp Casey granted Ava’s wish of spending a night in the treehouse, something she’s been wanting to do for years.
“It’s just an absolute wonderful way to end all of this,” Jennifer said. “Ava is just over the moon and can’t wait to spend the weekend in a treehouse with her puppy. And the family, too.”
When she has another scan in three months, doctors will determine the success of the proton therapy.
“We’re very hopeful,” Jennifer said. “But also, cautiously optimistic—and don’t want to promise anything.”
One thing is for sure: Ava has a wonderful summer ahead of her to spend with Caramel Willy, Ollie and her family and friends.
And a magical weekend in the treehouse closed another chapter in her health journey.
Jennifer said the family has felt so many acts of kindness through it all.
“Every person you encounter feels that same fear and pain,” she said. “And that helps.”