By Margaret Houben
If you’ve ever visited Jim’s Food Market in Little Fort in the morning, you’ve likely met the manager, David Madsen. Lately, if he’s seemed a little distracted, it’s because he’s worried about his grandson, Matty, who has recently been diagnosed with brain cancer.
At the store, there is a donation can with Matty’s picture and the saying “Kicking Jack Sass to the Curb” on it.
Dave’s daughter and Matty’s mom is Tamara Sherdahl, who was kind enough to explain the family’s struggles with this difficult diagnosis.
What were the first signs that something was wrong with Matty, and were there earlier symptoms you didn’t realize at the time that were actually warning signs?
”Matty and his sister were exposed to someone who tested positive for COVID,” said Tamara, “I had to stay home while they self isolated and self monitored. A few days in Matty was sleeping all the time and having a hard time staying awake. He also had been getting headaches more.
“I took him for another COVID test and it came back negative. The morning before I had to go back to work he couldn’t stay awake for more then 15 minutes. So I took him to emergency. They did blood work and an ECG. Everything came back normal and I was told to do a check up with our family doctor. “
Tamara says when they returned home Matty got out of the vehicle and started walking sideways, and then he passed out face first onto the main road.
“A gentlemen pulled over to help me,” told the mom, “We went back to emergency in an ambulance. When we got there I asked them to check his eyes. Since the spring his eyes looked a little funny to me. Something inside me was telling me it’s his eyes.
“We stayed the night and the next morning on Sept. 1, he had an MRI. That afternoon the doctor came in and said the words “brain cancer” and we were being transported to BC Children’s Hospital. The tumor was pushing on the area that controls his eyes. That’s why they looked funny to me. It was also blocking the CSF (fluid) and causing pressure.
What does the slogan ‘Kicking Jack Sass To The Curb’ mean?
”When we got to BC Children’s Hospital by ambulance my husband Chris was there waiting, and the first thing Matty said was he is going to beat this, and that nothing is going to take him down. In a time when his dad and I were terrified and falling apart, Matty was holding it together and being strong. He told us he had named his tumor Jack Sass, and he was going to kick it!”
When was Matty officially diagnosed and what is the name of his cancer?
”He had another MRI, and on Sept. 3, went in for a biopsy,” told Tamara, “We got the call that he was in the recovery room and we could see him soon. An hour later the surgeon called. Matty was showing signs something was wrong, and back to the OR he went. The tumor had a bleed and an EVD (a drain to drain fluid) needed to be put in. Matty didn’t wake up that night, and the next day he had a CT Scan, and an EVD put in to drain fluid on the left side as well.”
But Matty didn’t still didn’t wake up.
On Thursday, Sept. 9, Matty was diagnosed with germinoma brain cancer. A treatable cancer with chemotherapy and radiation.
A meeting took place with Matty’s team of doctors and surgeons, but they didn’t have a definite answer as to why Matty had still not woken up.
“You are told of complications that can happen. You just never think it will happen to you,” said Matty’s mom. “We agreed to start chemo with the hopes it would start to shrink the tumor and help with Matty’s waking up. We started to get eyebrow wiggles, hand squeezes and toe wiggles from Matty. Everyday we would talk and encourage him to move more.”
Then on day five into his cycle Matty started to open his eyes.
”Just a little, but it was something,” said the mom.
It took over two weeks before his eyes opened, and now Matty was going to have to relearn how to do everything.
”The EVD’s came out and he was on the Bipap machine for breathing. Taking deep breaths was the first thing he had to relearn how to do,” said Tamara.
But Matty started to show signs something was wrong when they again couldn’t get him to wake up. A CT Scan showed his ventricles were large (a sign of fluid pressure on the brain). So Matty went back to the OR once again and a EVD was put back in to help drain the CSF Fluid.
Tamara says during this time Matty’s physiotherapy “was going great”. He was getting stronger, and with a deep breath could say “mom” (very airy as his vocal cords were not quite there yet), however he still could not walk, lift his arms, or move his head.
A week after the EVD was put in, it was replaced with a permanent shunt. A week later Matty moved up to the oncology floor, and started his second round of chemo therapy that day.
“He was a little more tired than normal and went for a CT Scan.,” said Tamara, “It showed the ventricles were a little large, but they were able to adjust the pressure on the shunt to help with the fluid. That night something was off, as again we couldn’t get Matty to wake up.”
The next morning Matty was returned to the OR and the shunt was removed and an EVD put in. The shunt worked perfectly, but there was not enough pressure to drain the fluid, and a few days later Matty was again showing signs of being tired and not waking easily.
Tamara explained, “With the EVD there is a scale and a drain tube. Per hour there is a certain amount of CSF that needs to drain. The scale is set to a number for the pressure in your brain to drain the fluid. A normal number would be between 12-15 above 0 (zero). Zero is leveled with your ear.
“Matty was showing signs of low pressure and that would explain why the shunt didn’t work and why EVD’S had to be put in. On the scale it goes to minus five, but Matty still wasn’t draining at that number,” said his mom, “They kept lowering the External Drainage System and a doctor came in hourly to manually drain CSF. It was two days before Matty started to slowly drain on his own – at minus 50. He has what is called low pressure hydrocephalus. It’s very rare and there is not a lot of literature on it. The way they treat it is to slowly raise the EVD. We started with raising it 2cm every two days. Now we are raising it 3cm every two days.”
She notes that as long as Matty keeps draining the amount needed hourly and his vitals are good they will continue to raise the EVD.
“The goal is to get it back up to the number that a shunt that works at that pressure can be put in,” said Tamara, “But this has set Matty back with his physical therapy. He is in his third round of chemo right now and his fourth and final round will start the beginning of December. Then he’ll have a rest period before starting radiation.“
Matty’s illness has caused many changes in the Sherdahl’s family life.
His mom notes Matty’s 13th birthday is Dec. 8, and that Christmas will also be spent at BC Children’s Hospital.
“We have had to explain things in ways his little sister Kinsley, who is five, would understand,” said Tamara, “I have taken time off work to be here with Matty while my husband has been working and home with Kinsley. We switch out for one night a week so he can be here with Matty and I can spend time with Kinsley.”
Tamara adds there is no anticipated date when Matty may be able to go home, and that on top of the germinoma cancer and low pressure hydrocephalus he has a long road of physical therapy ahead of him.
How has the family managed to cope financially with all of the costs incurred while trying to be with their son in this fight for his life?
”We have been very fortunate with the support we have received from family, friends and strangers,” says Matty’s mom, “A friend started a gofundme (https://www.gofundme.com/f/kicking-jack-sass-to-the-curb) and it’s taken away the stress knowing we can be here with Matty. We will forever be grateful.”
She notes a very generous donation had also been received from the Barriere Lion’s Club to help Matty with his fight against Jack Sass.
A fundraiser for the family will be held at Jim’s Food Markets in Little Fort, on Dec. 8, which is Matty’s 13th birthday. Every cup of coffee, hot chocolate, or cappuccino sold that day will be donated to Matty’s family. People are also invited to drop into Jim’s Food Markets in Little Fort anytime to throw some coins into the fundraiser can for Matty.
Let’s help this young fighter Kick Jack Sass to the Curb!
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