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Wacee Simenson battles cancer with help from many "Wacee's Warriors"

 

April 11, 2018

Wacee Simenson, a first grader from Chinook, has been battling a fast growing cancer discovered in his upper body in early February of this year. The Simenson family has received emotional, spiritual and financial support from family, friends and strangers.

Reporter's note: Wacee is a first grader, from Chinook, who has been battling cancer since early February. With Wacee's family still in the throes of dealing with his illness, I was unsure how to get the information to do a story and not intrude further on their lives.

I ran into Justin, Wacee's dad, and he said he thought Tomi, wife and mom of the Simenson family, would be glad to help share Wacee's story. Tomi was very gracious and provided a narrative with a lot of information about how the disease was identified, the ways treatment developed and what Wacee's prognosis is. She stated a number of times how much she appreciated the spiritual, emotional and financial support from family, friends, community and total strangers. This is the story, to this point in time, of Wacee's battle with cancer as expressed by his mother, Tomi Simenson.

"We found the mass at the Havre ER on February 9th this year."-Tomi Simenson

Tomi wrote, "Looking back on things now I can see when little things started." She said during the two weeks before the football-sized mass was found in Wacee's upper body he had not been sleeping well and would sometimes complain of "leg pains." Relying on the normal treatment for those childhood conditions, Tomi gave him Tylenol and assumed it was growing pains, not atypical for an active seven year old.

About a week later Wacee began to complain of minor difficulty breathing. Again, mom assumed his asthma was acting up. Asked if he wanted to stay home from school he insisted he was okay. Tomi noted, "With all the bugs and viruses around school, we thought it was just a virus or something hanging around."

At the end of the second week, on Thursday, February 8, Tomi noticed, "something was off." For the second time in a week, the school called about Wacee's condition. When she entered the school and saw Wacee staring toward the door with a glazed look she recalled vividly, "I knew something was wrong. He had big dark circles under his eyes, he wasn't smiling and I knew something was up." Tomi and Justin decided Wacee needed to be seen by a physician.

The next day Wylee, Wacee's 12-year old brother, was showing signs of strep throat. Justin took the two boys to see Dr. Joe Nemes at the Sweet Medical Center. Wylee tested positive for mononucleosis, but the doctor was concerned because Wacee had a tenderness in the area of his abdomen. The doctor recommended a visit to the emergency room (ER) at Havre hospital for an X-ray.

Expecting a diagnosis of mononucleosis, or at worst, appendicitis, for Wacee, Tomi wrote, "I honestly never thought we would hear any of the words that came next." After a long wait, the doctor told Wacee and Tomi the medical staff found a "mass the size of a football" in Wacee's chest. The tumor was so big that part of it was visible, in the upper body cavity, even though the initial X-ray was taken of the lower abdomen. Tomi summed up that moment: "Our doctor said words like "tumor, cancer and mass" but I honestly didn't hear anything that he said after that. I just couldn't believe we were talking about words like that when we came in for what seemed like a stomach bug."

Tomi called Justin to come to the hospital in Havre. After discussions of possible options, the couple decided to take Wacee to Children's Hospital in Denver. A flight crew was scheduled to take the family to Denver, but freezing rain in Denver stopped that plan. Meantime, the temperature in Havre had dropped to -44.

After a number of calls between doctors in Havre and Denver, a decision was made to fly Wacee to Kalispell Regional Medical Center. Doctors in Kalispell had worked before with their counterparts in Denver and there was a good relationship. At 1 am, on Saturday, a flight crew from Billings flew Wacee and Tomi to Kalispell where they were met by a team of doctors and "our new Oncologist Dr. Courtney Lyle." Tomi added, "Things happened very fast after that."

After a battery of tests, scans and blood work, Wacee was taken in for a biopsy of the mass. A pathologist was in the surgery room and after identifying cancer cells in the mass, the team called for Wacee's first "Lumbar Puncture" (where they inject the chemo in to his spinal fluid). The team believed because the mass had grown so quickly that it would respond quickly to the chemo. One downside of that was the potential for "tumor lysis" which means the mass could dissolve so fast it could overwhelm the kidney's ability to get rid of it. That could require dialysis. Doctors felt Denver was a more appropriate place should dialysis be needed.

On Sunday a crew from Kalispell flew Wacee and Tomi to Denver. Doctors continued to review and interpret all the tests that had been done in order to pinpoint a diagnoses. By Tuesday a diagnosis was completed-T-Cell Lymphoblastic Lymphoma. Wacee remained in the pediatric intensive care unit for a few days, then was admitted to the hospital for two weeks. After that, Tomi and Wacee stayed in a community facility for oncology patients and drove back and forth to the hospital for continued treatments.

Tomi wrote, "So many things had to go just right for us to find it (the mass) when we did." She credited Dr. Joe's recommendation to get an immediate X-ray as a critical part of how things developed. Tomi also shared that she and Justin were, "upset that we let something like that get so big so soon." Dr. Lyle, the oncologist, assured them that no one would have suspected the minor symptoms were signals of something growing so quickly. The doctor felt the mass had only been growing for two weeks when it was discovered.

"...most amazing experience (was) seeing those scans after treatments on day 30."-Tomi Simenson

Tomi wrote Wacee's type of cancer is very treatable and they doctors are saying, "...he has anywhere between an 80-90% chance of a full recovery." She continued, "The first 30 days were very intense with treatments twice a day." After 30 days the scans showing the decrease in size of the mass were very encouraging.

The family now has a "road map" of treatment dates and plans. Future treatments will be done by chemotherapy. Once Wacee was back home the Kalispell team called with the "next plan of attack." Treatments will continue once a week in Kalispell through April and May, then during June every 10 days. Tomi wrote, "July and August will be really hard months. That part will get very intense, much like the first 30 days of treatment."

Wacee's had a few hiccups along the way, with the most recent around Easter when his blood count dropped and he was admitted to the hospital for an infection. Tomi notes, "All of these things are pretty common with this treatment plan.... Around the first part of September he will hopefully go into "Maintenance" where his treatments will go to once a month for two years." The prognosis is good but reality is, "This will be something we will have to watch carefully for years to come."

"The community has honestly been so amazing."-Tomi Simenson

Tomi wrote, "Anytime I try to talk about what people have done for us I start crying." She described those first days, then weeks, as, "Things happening so fast...there wasn't time at all to think about anything else." That's when family, friends and the larger community did things to help remove the stress of the situation. She added, "It's such a humbling feeling to know that we are cared about that much in this wonderful community."

The Arnold family's kids Erica and Cody are close to the Simensons and wanted to do something special for their pal Wacee. The Arnolds have a t-shirt business and began making "Team Wacee" t-shirts that were sold at tournaments and sports events. As people began to post pictures wearing #teamwacee shirts the idea caught on. Teams from the Hi-Line, during the district and divisional basketball tournaments, posed wearing their Team Wacee shirts with big brother Wylee holding a "Team Wacee" sign.

Tomi's friend, Kelly Anderson, started a Facebook page called "Wacee's Warriors." Tomi said, "Kelly was good about posting updates for me in the beginning when things were just too busy for me to be on social media. I would relay information to her and she would post it for me." The page now has more than 10,000 followers. "We have had people reach out to us from all over the United States and even different countries around the world," Tomi added. Kelly also set up a Go Fund Me Account and it grew quickly. Another friend, Bonnie Weber, set up an account to receive contributions at First Bank in Chinook.

"One thing I'm beyond thankful for," Tomi wrote, "is the people that have prayed for my boy." She shared expressions from entire churches that were praying for Wacee and the family. She shared, "There have been so many things that the doctors expected to happen that never did and so many miracles that we see on a daily basis. I believe that comes from thousands of people saying prayers for my boy."

What's next?

Wacee gives a thumbs up while wearing a #TeamWacee shirt. Friends of the family began making the shirts to do something for their "pal, Wacee"who was diagnosed with a fast growing tumor two months ago. Wacee's mom, Tomi, said, "Anytime I try to talk about what people have done for us I start crying."

Asked what the Simenson family needs at this point, Tomi said, "We're not really sure what we need from this point on. We all want to be able to pay all of this forward someday, maybe start a foundation to help kids with medical challenges like Wacee but who don't have the kind of support group our family has had. That's something we'll brainstorm and think about."

"Another friend, Debbie Ramberg, offered to put on a fundraiser for us," Tomi wrote. The benefit is set for Saturday, May 5th at the Blaine County Fairgrounds. Tomi added, "I'm really looking forward to being able to thank people in person at this benefit and see everyone that we haven't seen in a while, and, honestly, just have a night of fun to celebrate this little Warrior."

Tomi added one more item to the narrative she shared: "I've always told people that we live in a great community.... We are beyond grateful for every person that has helped and every single donation that has been given. The way everyone stepped up made us feel like we could fight this, knowing that we have a whole army at home fighting this fight with us, and standing behind us the whole way. We appreciate everyone so much and are beyond thankful for each and every person that is helping us through this."

 
 

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