April 17 event for Victoria girl fighting cancer
The local community is teaming up to help a Victoria family’s young daughter, who is battling a rare cancer.
Seven-year-old Maddison Mertz was diagnosed with stage 4 glioblastoma multiforme in November after having headaches and a stiff neck.
Maddison, who is very active and has a passion for gymnastics, thought she might have injured herself.
“Leading up to it was weeks of stiff neck, and we thought it was a gymnastics injury,” said Zack Mertz, Maddison’s father.
They rushed to the pediatrician after Maddison’s right arm began tingling. After a number of tests, including a MRI scan, the doctor discovered that Maddison had a tumor in the back of her neck.
“You never forget how the doctor delivers news,” Zack said. “They kind of come in with somber faces and say, ‘can we see you in the back room.’ You know something is wrong. Then they show you there is a mass in your daughters neck and you go into shock.”
Two weeks later, Maddison was in surgery and the surgeons removed 95 percent of the tumor in her neck. Then the family had to wait to see if the biopsy revealed if it was cancer.
“You go through a lot of emotions because you don’t know how it’s going to turn out,” Zack said.
A few days later the doctor’s informed Zack and his wife, Lindsay, that their happy, active, beautiful and strong little daughter had cancer.
Zack said, “You break down and cry and then you try and compose yourself to ask all the questions.”
Glioblastoma multiforme is a rare and aggressive cancer that occurs in the brain and spine. Zack said this type of cancer is very rare in children.
“We initially told Maddison it was a lump in the neck because we didn’t want to burden her with cancer, but then we came to the realization that she needed to know,” her father said. “She kind of blew it off. It’s hard to read a 7-year-old. Either she‘s blocking it out or doesn’t want to think about it. Mostly she just wants to be normal again.”
The family began searching for different treatment options that may be successful for Maddison.
Zack said it was a “needle in a haystack” search. Lindsay scoured though websites and social media to find successes by other glioblastoma multiforme patients.
“We were on this crazy road trying to find treatments,” Zack said. “It’s a learning game. It’s tough”
Zack said that the standard treatment for glioblastoma multiforme is surgery, radiation and chemotherapy.
In December, Maddison went through radiation treatments five days a week, for six weeks. Before each treatment, Maddison was put into a hyperbolic chamber to make the radiation treatment more effective. The hyperbolic chamber was a treatment that they discovered was effective in their research.
After radiation, Maddison began chemotherapy.
It was discovered that the only glioblastoma multiforme chemotherapy drugs that are available wouldn’t be suitable for Maddison because of the way her body would process the drugs.
Maddison’s doctor prescribed another chemotherapy drug that could be more effectively processed and based on her genetic makeup.
However, the Metz’s insurance refused to cover the new $20,000 a month chemotherapy drugs claiming the treatment was “experimental.”
“My mind was more focused on insurance battles,” Zack said. “I understand why surgery, radiation and chemotherapy are the standard treatments because those are easily handled by insurance companies, but there are other options out there that we found out, sometimes later.”
Zack said he paid $2,700 out of pocket to get the chemotherapy drugs at the pharmacy for one week.
Ultimately, the Mertz’s were able to get the drugs covered and Maddison was treated for three weeks.
“I’ve talked to other people who have gone through this type of cancer, but there’s not a common magic formula,” Zack said. “Everyone tries to find their own formula. Everyone’s body is different in terms of their tumor mutations, the way their body processes chemotherapy. It’s a learning game and it’s tough.”
Sadly, last month, a follow-up MRI revealed that six new tumors had grown in Maddison’s brain and spine in the week after she stopped chemotherapy.
Zack said, “We were, like, what happened? We kind of shutdown. You have this internal battle to stay positive, and this was so disappointing.”
The parents began searching for more treatments and discovered locoegional hyperthermia treatment, which is targeted heat therapy to kill cancer cells.
This treatment is in clinical trials here, but is approved in Canada, so the family packed their bags and drove to Canada.
Zack said that since they’ve arrived in Canada, they are less stressed because Maddison has more treatment options.
“To not have to stress about things now is unbelievable and now we can focus more on Maddison,” he said.
In addition to the hyperthermia treatment, Maddison is also receiving dichloroacetate and vitamin C treatments. Currently the family is looking at other treatment options, including a specialized vaccine from Germany.
Zack said, “It’s a lot for her but she is tough.”
They also try to make time for fun whenever possible. Maddison enjoys going to the Vancouver Aquarium, playing with her dogs and riding horses on the farm they live on in Canada.
“We don’t want to do anything hospital related if we don’t have to,” Zack said. “I feel bad for her that it’s all we do, so we make time to do fun things.”
Maddison received some extra support March 21 when the whole school at Victoria Elementary dressed in pink.
A fundraiser is also being planned for 5-8 p.m. Monday, April 17 at the Excelsior Brewing Co., 421 Third St., Excelsior.
The family-friendly event that will include live and silent auctions, games kids, activities and local food and beer. There is an entry donation of $5.
For more information, visit bit.ly/2nQJyWB.
The organizers of the event are Jody Walstrom, her sister-in-law Jackie Walstrom and their friend Dana Spensley, whose daughter is friends with Maddison at Victoria Elementary.
Jody Walstrom said that she has never met the family, but heard about their story and wanted to help.
“When we heard about the astronomical costs that the family had for treatment and obviously the issues with insurance coverage, we wanted to do something,” she said.
“We are so blessed and thankful that everyone wants to help out,” Zack said. “There are no words to tell how thankful we are to have to not worry about some of the bills. It’s so nice. There are so many things we have to worry about and to chop one of them off is just so nice. It helps open up options”
The family also has a GoFundMe page at bit.ly/2nFrZ8a.
Contact Paige Kieffer at [email protected]