There have been only four times when 11-year-old Michael “Phin” Jensen has shown frustration at the cancer growing inside of his brain and living in his spine since last August when he was diagnosed with Grade IV Glioblastoma Multiforme (GBM).
It was usually when he couldn’t participate in a school or sporting event, or because he realized how much he hasn’t been able to do because of GBM, the aggressive malignant brain tumor, Donna Jensen, his mother told your Catholic Herald during an interview at their home in Pewaukee last month.
In those moments, Phin said his mom told him, “God has big shoulders, you can go ahead and swear and stuff.”
And he did.
But that is such a small part of the way he has reacted to about 12 surgeries in five weeks, several seizures and failed shunts, a blood clot, 35-to 40 pounds of weight gain, fatigue, hours of MRIs and failed treatments.
Even after hearing Monday, April 8, that the Phase I study in which he participated was unsuccessful – an MRI showed more tumor growth in his brain, and he has experienced some mild paralysis on the left side of his face – Donna said Phin, whose nickname resulted from friends teasing Donna over her opposition to the name Phineas, which her husband wanted for their first child – still has a good attitude.
“(He’s) joking around and chatting everybody up,” she said, choking back tears. “He really does have a positive outlook.”
Praying for time
|Help the Jensen Family
Donations can be made to the Michael "Phin" Jensen Charitable Fund at any North Shore Bank.
They’re all hoping for a miracle, and another study in which he can participate.
“We’re just praying for more time,” she said. “Prayers for us are everything.”
Though he was diagnosed with brain cancer about eight months ago, Phin started asking God to help him fight the monster inside only a few months ago – only after Fr. Sean O’Connell, administrator at Queen of Apostles Parish, told him it was OK to pray for more than the others he includes in his prayers – like his friend with diabetes, sick children, kids who lost their parents or whose parents are getting a divorce.
“You were always praying for other people,” Donna said to her son, who sat across the room in another chair.
“Yeah, I felt like I was being selfish with praying for myself, so …” his voice trailed off as his eyes locked onto his mother’s. “That made you cry, didn’t it?”
Donna nodded, wiping away the tears that welled up her eyes.
He held up his hand as he walked over to her chair, raising one finger at a time, counting gently, “Mommy, one, two, three, OK?”
That’s their coping mechanism – how they get each other to stop crying.
He stood in front of her for a moment, talking almost in a whisper, then returned to his seat.
“You have to have at least one really bad thing happen to you, but then you get something good, you know,” he said. “Because Jesus, he didn’t have a perfect life, he was treated miserably, whipped and everything, but he got his good thing you know, all of those wonderful people, all of those wonderful followers.”
Headaches reveal serious problem
What Brian and Donna Jensen, thought were headaches caused by dehydration from Phin’s participation in cross country at school and 5Ks during the summer turned out to be a 5-centimeter brain tumor.
They started with a visit to an urgent care doctor, who couldn’t see any symptoms or determine that anything was wrong. But during a visit to the family practice doctor, the doctor noticed Phin’s right cheek was just a little fuller than the other when he smiled. She told the Jensens to take their son to the emergency department at Children’s Hospital and to make sure they looked at him.
“Well, then he got up and all of a sudden he was ataxic (a loss of full control and bodily movements),” she said. “He couldn’t walk … so then the paramedics took (him) to Children’s.”
By the time they arrived, Phin was fine.
With instructions from their family doctor, Donna suggested an MRI, which revealed what doctors at Children’s thought was a low-grade, slow-growing and likely benign tumor. But a closer look showed the tumor was fast-growing and had different types of tumor cells, which verified that he had GBM, she said.
His diagnosis was followed by several roadblocks.
He participated in a Phase II study, but had to end early because of a blood clot that formed on the outer part of his brain.
Then, he experienced a seizure, which forced Brian and Donna to take turns sleeping in his room.
“What’s a seizure again?” Phin asked his mother.
“Where you, when your body moves, but you don’t know that it’s moving and you’re kind of like knocked out,” Donna explained.
“Oh, yeah,” he said.
Phin finds humor despite situation
Even during doctor visits, where the reality and seriousness of his diagnosis is explained, Phin jokes about treatment.
“He asked them, ‘Am I the first guy? I don’t want to be the first guy, just in case it kills ya, I want to be the second.’ Isn’t that terrible?” Donna said laughing.
It’s the same thing Phin told his friend who has diabetes.
“When they come out for the cure for diabetes, I say you be the second person to take it just in case it kills the first and if they make another, I want you to be the second guy again – just in case it kills the first,” he said. “Same thing with me.”
On Sundays, Donna lets Phin break from his gluten-free, sugar-free, corn-free, salt-free, nitrate-free and organic meal schedule to enjoy Girl Scout cookies from his 9-year-old sister, Marie.
“God rested on Sunday, so on Sunday we can have sweets. …” Phin said. “Before this cancer, I could eat whatever the heck I wanted.”
“Right, but we just try to eat healthy now, but on Sundays, that’s your day,” Donna said, explaining that the whole family tries to eat as close to whole food as possible now.
Community pitches in
Donna said that their family, school, church and community have been supportive since Phin’s diagnosis, holding fundraisers to help them with medical bills, staying with him in the hospital so that Donna could head home to shower and attend Mass before heading back, bringing the family meals.
Steve Manne, the boys’ basketball coach at St. Joan of Arc School in Nashotah, heard about Phin’s story last December when a friend sent an email link to a Queen of Apostles spaghetti dinner and auction for Phin.
The story pulled on his heartstrings after he attended the dinner and met Phin’s parents.
“After we collectively had internalized the full situation, it was like it was unfortunate that he was having so many bad days because of the situation; it just didn’t seem fair, and we wanted to help him have a good day, so we started thinking about ways we could help him out,” Manne said, forming an idea to hold a “Community vs. Cancer Basketball Classic” on Feb. 23, where the eighth-grade boys’ basketball teams at St. Joan of Arc and Queen of Apostles competed at the Bradley Center, followed by a Milwaukee Bucks vs. Atlanta Hawks game.
He met Phin when he visited the family to present the idea for the event, which raised more than $4,500 for the family.
“He could talk for an hour without stopping, and you don’t lose interest,” said Manne, who continues to visit the family. “He always has something interesting to say – you hang on every word. He’s just a really, really neat kid who’s just got a ton of stuff he wants to talk about.”
Aim for more good days than bad
The team’s focus was to help Phin to have more good days than bad.
“The thing that’s interesting about him is he doesn’t have any resentment. …” Manne said. “I’ve just never picked up any resentment from him and he’s got a lot to be resentful for, which is just, I think that’s almost God-like, you know what I mean? It’s an incredible characteristic.”
Even the optometrist at Wal-Mart who was checking Phin’s eyes during a visit to get him new glasses, left the office, went into the store, bought scissors and cut the long, curly eyelashes that grew fast because of the medications Phin was taking.
“He was nice enough to cut them off,” Donna said of the lashes that would interrupt Phin’s sleep. “People have been so wonderful.”
At school, Phin can head to the “sick” room whenever he needs to take a nap. He gets to use the “special” bathroom reserved for teachers so he doesn’t have to take the stairs.
Positive attitude evident
He’s the one who received the wristband at Queen of Apostles for the best attitude out of the entire school.
“I know like everybody says ‘that kid is the best kid,’ or whatever, but he really is a kindest, most thoughtful, a compassionate, fair, generous person,” Donna said.
And he has a positive answer to everything, kind of like the character of his favorite movie, “Wall-E.”
“Kind hearted, always like happy all the time, easy-going” he said, his mother nodding in agreement.
“He’s so laid back that my husband would say he’s more like him, but (Phin’s) more tender-hearted like me, I think. …” Donna said. “I’m more social; he’s very social. I’m very into being inclusive and making sure that everybody kind of fits in and that everybody’s kind of brought into the fold, and that’s kind of how he is, too.”
He’s a little rusty with typing and playing acoustic guitar because of the time he’s taken away since his diagnosis. And even though his medication makes him more emotional, hungrier and, worst of all in his eyes, tired, Phin looks at the glass as half-full saying he can reteach himself.
“My bad thing is this cancer. …” Phin said. “So many people have been supporting me and everything … and then people send me a bunch of Lego sets, that’s awesome, and it’s just, I got to go to Atlantis, you know, he’s doing a lot of good stuff.”
“Yep, a lot of good stuff coming your way,” Donna added. “Yep, and we keep praying for that miracle for the cure, right?”
“Yeah,” he answered.