Community cares for Spencer in his cancer journey

Spencer Thorsland is living his life to the fullest.

And while his life these days is largely relegated to his bedroom and his family’s home along South Parkview Boulevard in Brandon, 12-year-old Spencer is energized when he talks about his recent trip to DisneyWorld and the Star Wars memorabilia that he’s added to his collection.

Think light sabers, Grogu hats and Mandalorian helmets, and kyber crystals.

He has them all.

But Spencer’s energy isn’t always there. That’s because his three-year journey battling rhabdomyosarcoma, a cancer of soft tissue (such as muscle), connective tissue (such as tendon or cartilage) or bone, is winning the war. 

After months of hospital stays, years of chemotherapy and radiation treatments, multiple surgeries and medicines, scans and tests, his medical team at Mayo Clinic has said his body can withstand no more.

“Our doctor sent a text message, ‘This is the worst way to share this news with you …,” shares his mother, Lori Huml. “In the CT scan, we saw some things that are concerning.’”

The news came as a surprise. After all, the surgery that Spencer had just endured was to drain fluid, Lori shares. 

“This isn’t supposed to come back. We did high peck (chemo). We did everything. How did anything make it through all that to start growing again?” she questioned.

The news, as one would expect, was devastating. There was nothing more to be done, other than to bring Spencer home and begin hospice care.

While Spencer’s parents were coming to grips with the news, she was at a loss for words of how to tell her son the cancer was taking charge.

“He could kind of sense something was up,” Lori shares, “because he was asking questions. and we kept doing more scans. He’s like, ‘Why are we doing more scans?’”

Alone in his hospital room, Lori said she found a quiet moment to tell Spencer what was going on.

“It was such a battle in my brain telling my child this news. … But it was just so peaceful in the room,” she recalls. “I think I should tell him. I said, ‘Hey, buddy, they saw some things when you had your procedure. They did some biopsies and things are looking like there’s some cancer that has come back.’”

Just as he has the last three years, Spencer’s reaction was brave.

 “I guess we have to get up and fight again,” he told her.

They would fight, she assured him.

“And then, he kind of stopped and said, ‘I know you don’t want to hear this, but I’m just kind of ready for this be over.’”

Lori said medical staff told them to enjoy the time they’ll have with Spencer.

“Now, it’s just the power of prayer. We’ll just keep praying for a healing and take it one day at a time,” Lori said.

Doctors gave no specific timeline, but did say, “He won’t be here a year from now.”

Spencer’s pain is now managed by low- to medium-dosage medications.

“Today, he’s happy and good and we try to make memories as we can but still live life,” Lori said.

Here we go again

It was March 2022 when Spencer had wrapped up all of his treatments. At that point, he underwent scans every three months to make sure everything was clear. The first scan was in April, and it was clear. So were his July and October scans.

Then his stomach pain – the same kind of pain he had experienced three years earlier – returned. And just as medical personnel told his parents then, they said Spencer was simply constipated and may have a urinary tract infection.

“But then one of his labs came back kind of weird, but they were thinking it was a lab error,” Lori said.

A CT scan would be ordered, if they chose to do so, which Lori said, they did.

“And he had a mass,” she said.

They returned to Sanford Children’s Hospital, where Spencer underwent surgery to remove the tumor.

What Spencer’s surgical team found, however, was a “mushy tumor mass” that couldn’t be resected out. If they touched it, Lori tells, “it was going to mush and spread.”

Chemotherapy was ordered once again, with the possibility of further surgery.

About the same time Spencer was starting chemo, Lori was reaching out to other families of children with rhabdomyosarcoma to see what kinds of treatments they did. 

“A gentleman saw it and his son had had a very similar experience, and he’s like, ‘You need to contact this doctor at Mayo Clinic. Here’s his phone number.’”

Lori called the number, left a voice message, but he never heard back

“When the guy reached out again, he asked if I had talked to Dr. (Patricio) Gargollo,’” Lori said.

After she told him that she had left a message but received no response, “He said, ‘Sit tight, he’s going to call you in two minutes.” And in two minutes, my phone rings. It’s this doctor.”

The doctor is a pediatric urology surgeon with Mayo Clinic. After Lori enlightened him on Spencer’s history, he asked to see the medical records.

“He called back,” Lori remembers, with the doctor telling her, “I can get that out. I can take that tumor out. My team can get that out. We can do it. We do it all the time. This is our specialty.”

“So, we shifted gears,” Lori said.

Over two days in late January of this year at Mayo Clinic, Spencer first endured a plethora of appointments, tests and scans in preparation for surgery. On Jan. 26, surgeons removed the entire tumor.

“We chose to do a procedure call ‘High Peck’, where they took 107-degree chemo and just poured it in his body during the surgery. It’s a new kind of procedure and it’s not necessarily for his type of cancer,” Lori said, but is used most often to treat ovarian cancer.

“For 60 to 90 minutes, they basically rotate his body, back and forth while the chemo goes in, and out in a circle. It’s just crazy what they do or what they’ve come up with,” she said.

Although told the procedure could possibly damage tissue – “you’re putting chemo right on your body” – they knew there would be some after effects and things they’d have to do to keep everything healthy, as their focus remained on removing the cancer from Spencer’s body.

Spencer came through the surgery and it was soon learned there was no sign of disease.

“So, they were like, we got this zero margin; we got everything out.”

Once again, chemotherapy followed, “Because if you take it all out and you don’t do anything afterwards, they say it’s going to come back,” Lori said.

Unfortunately, Spencer had difficulty in recovering from the procedure, most specifically, his wound wasn’t closing, and so he remained at Mayo through mid-March.

It was summertime when the decision was made to discontinue chemotherapy.

“We got to the point where we’re going to do more damage than good if we continued, she said.

Spencer now has tubes and bags attached to his body. His bowels and bladder don’t work as they should.

“His own body created its own hole. … He’s got a fistula (because) his colon and his bladder were connected by a fluid pocket that created itsel,” Lori said. “He’d get output from the colon that would get into the bladder, or bladder into the colon, and then it would sit in this middle pocket of fluid, so they were always trying to put a tube in that pocket to drain it in a ball outside of his body.”

The procedure worked off and on.

“Then, things just escalated and stuff was leaking everywhere,” Lori said. “So, his own body where his incision is, it just opened a little hole there, and that’s where everything’s coming out right now. We put a bag over that. It’s urine, it’s stool, coming out in that bag right now. And then he has bags directly to his kidneys as well that are emptying his bladder. We’d been managing that and having complications with that all along, which is what led us back to Mayo this last time.”

At this time, they were at home in Brandon when “weird leaking” began again. That constituted a visit to the ER and another scan, which revealed the need for the fluid to be emptied again. They returned to Mayo for that procedure. The scan, however, that was taken at Sanford “showed some suspicious stuff.”

During the procedure, they biopsied these suspicious areas, only to find several tumors.

“He had just had scans again in October and just like that, it just took off again. Something somewhere survived all of the High Peck, survived the things we’ve done,” Lori said.

A community rallies

The greater Brandon community has rallied around Spencer and his family’s journey through his cancer. On the Sunday evening in November they came home from Mayo, he was greeted with an escort of police cars and fire trucks. As they made their way to the Huml home, friends, family and the community had lined the streets, holding up signs of encouragement, and waving to welcome him home.

“Everybody says ‘humbling,’ but that’s the word,” Lori says of the countless acts of kindness. “It’s just humbling and incredible and I don’t even know half of the stuff that’s going on.”

Donations have been made to the family.

Shirts have been sold.

Fundraisers have been held.

Meals have been provided.

And there’s more.

As much of a blur as one could expect it was, Spencer took it all in, first from the front seat of a fire truck, next at his family’s home where friends and neighbors and even people who don’t personally know him, showed up in support.

“He got hugs and talked to people,” Lori said.

On their trip from Rochester back to Brandon, Spencer had no inkling the celebration that was awaiting him.

“I was getting messages about things getting put together, but I had no idea it was going to be like that. He was laying down in the back and says, ‘My nose keeps itching. My nose is so itch,’” Lori said. “I found out later, like literally when he was experiencing that is when all the people were at our church making signs and doing all that stuff.”

Make-A-Wish trip to DisneyWorld

Spencer and his family returned almost two weeks ago from their Make-A-Wish trip to DisneyWorld in Florida. 

“It was so fun,” Spencer shares. “I got my necklaces that I wanted, too.”

One of the necklaces – the white one – he talks about were gifted to him by Ashley Eckstein, who plays Ashoka Tano in a Star Wars Clone Wars.

“It turns out that this one is the good one and this one is like the ‘dark side,’” Spencer informs. “So, I like this one more. It says, ‘May the force be with you’ on it.”

DisneyWorld wasn’t Spencer’s first choice. He had his heart set on Disneyland in California “because he was all about this black necklace at a place called Galaxy’s Edge, which is inside the Disney facilities,” Lori tells. 

To Spencer’s fortune, a black necklace was waiting for him at Galaxy’s Edge at Disneyworld.

Spencer will tell you that he hasn’t always wanted to go to Disney.

“But now, I would go back and do everything over again. It was so fun,” he tells. “I was just there for these necklaces, but the best part about Disney is definitely making lightsabers with Ashley.”

Spencer has formed a friendship with Eckstein, who is good friends with Emily Swallow, who plays Armor in the Mandolarian. He was connected to her through Voices Against Cancer, which was founded by a doctor in Harrisburg and his wife.

“He’s one of the honor kids of Voices Against Cancer, so he’s gotten to do different events. He ended up connecting with Emily through some video stuff, then met her in person at an event at the doctor’s house, and they just hit it off and have become like besties,” Lori said.

Because Eckstein was on the other side of the U.S., Swallow met Spencer and his family on his Wish Day.

“He didn’t know and I didn’t tell him anything about it, and the other kids didn’t know about it. When she did her voice, he knew who she was,” Lori said.

Swallow spent the entire morning with the Humls.

“He wanted her to push his wheelchair, so she pushed the wheelchair. She made his lightsaber with them. She made the Droid with them. She definitely gave him some amazing experiences because she knew somebody who was working there that got him up and close with a Mandalorian that was there with the Grogu and he got to see Chewbacca. It was just like this person would kind of come and sort of part the crowd. It was just incredible and he felt like a celebrity because this guy could just tell people to back away and then Ashley was with them,” Lori said.

Prior to leaving for Disney, Spencer’s energy level was low. He was sleeping a lot, and Lori said they questioned if they would make the trip.

“We really expected that he and I would be back at the villa a lot and David and the boys would go do activities and we could do a lot back at the villa. Not once did we go back to the villa, not once. He rode the rides, it was crazy. I mean roller coasters and crazy, bouncy stuff and dizzy stuff,” she said.

Spencer fully embraced the opportunity.

“I didn’t care if it was scary, but this is a big opportunity and I’m probably never going to be able to get to do this ever again, so I took it all in. I just took every part of it in, and that’s what gave me the energy,” Spencer tells. “If you’re not going to Disneyland for rides, like what are you doing?”

Peace and happiness

Last week, a gentleman from the family’s church, Brandon Valley Assembly of God, came to their home to share his personal story of experiencing heaven.

Lori said the man died on the operating table and said he went to heaven and came back.

“He was talking about what he saw. He saw the tree of life and he saw the living waters and different things that he told us about so we could kind of try to visualize it,” Lori said. “He’s had a lot of amazing experiences, and we just keep praying for that healing miracle; you just never know.

“Now, the only thing I can think of is peace and happiness,” Spencer says. “There was a guy here yesterday and he was just telling me like, it’s just so peaceful.”

Lori said her son’s maturity and spiritual life is more than what some people will ever accomplish in 90 years of life.

“I mean, just what he’s accepted and his willingness to talk about things,” she said. “We’ll have moments when he gets a card or something that might talk about legacy or just say something. And he might be in that moment, like, that’s not where his mind is. And so, then it makes him sad. But then, he’ll say, ‘Heaven is going to be beautiful.”