Posted October 15
COEUR D'ALENE, Idaho — When Brittney Lenz heard the shocking news that her 3-year-old daughter, Brystol, was diagnosed with a rare form of kidney cancer, a long journey began.
"It's a lot to take in when your little girl has something like this," the Post Falls mother said. "It's overwhelming and scary, especially with how quick it happened."
Sacred Heart Children's Hospital in Spokane, which serves as the pediatric oncology unit in the region, has served 76 kids with life-threatening illnesses and their families this year, reported the Coeur d'Alene Press (http://bit.ly/2dJvhZ8).
While such situations are exposed through fundraisers and word of mouth in the community, it's difficult to grasp what affected families go through after the troubling news comes down.
Embarking on long journeys
Brystol was recently diagnosed with a rare children's kidney cancer called Wilms' tumor.
"I was really upset and angry," Lenz said of her initial reaction. "I didn't understand why it happened to my 3-year-old daughter. I still have moments of breaking down because I have a hard time understanding why this is going on.
"I would take it all for myself in a heartbeat to not see her go through with this. I hate it."
Brystol had her right kidney removed and is in her fourth week of chemotherapy treatments during the 20-week journey.
"She's a strong girl, but the hospital is terrifying for her," said Lenz, a single mom. "It's never a fun trip. We're battling through all the side effects of chemo (including nausea, fever and nerve issues), which is not fun for an adult, but is especially hard for a 3-year-old."
If Brystol's temperature reaches 101 or higher, she must be admitted to the hospital and she's not allowed to take fever-reducing medication.
"Her immune system is just not the same," Lenz said. "It's a scary situation for her to catch a cold because she can't fight it now."
During a visit to Sacred Heart, Lenz met Erin Reid, a St. Maries mother whose 3-year-old son, Bryson, has aplastic anemia, a rare bone marrow disease.
Bryson has started the process of having a bone marrow transplant from the Reids' oldest son, 10-year-old Turstin, at Seattle Children's Hospital.
"There's a 25 percent chance that a sibling donor could be a match so the odds weren't great," Erin said.
Turstin said he's nervous about the transplant.
"But I'm also excited to help my brother get better," Turstin said.
Erin said she and her husband, Douglas, tell Turstin that he's Bryson's hero.
"Without him, we'd have to go with an unrelated donor," Erin said. "Because it's a sibling donor, the chances of Bryson's body rebuilding are even better."
Bryson, who will undergo chemotherapy before the transplant on Oct. 19, must remain in Seattle for evaluations 100 days after the procedure.
Bryson started to have large bruises on his body in April. Erin said there were five agonizing months of not knowing what Bryson had before he was finally diagnosed on Aug. 15.
"The hardest part about all of this was before the diagnosis because we didn't know how to help him," Erin said.
How to cope with agony
Tammy Brickner, child life specialist at Sacred Heart Children's Hospital, said staff encourage families to keep as normal of a routine as possible.
"Keep on schedule at home and we also encourage parents to discipline the child as usual," she said. "There's a tendency to want to spoil them, but in the long run that is not good for the child or the family."
Brickner said when children are diagnosed with a blood disorder or cancer, the families' worlds are turned upside down.
"The parents may have to quit their job or take a leave of absence, which affects their income," she said.
Oftentimes, Brickner said, other kids in the household will need to stay with family or friends while the parents are with the affected child.
"Families not only cope with the sick child, but siblings often feel left out because the one child is receiving all the attention," she said.
That's why the hospital focused on family-centered care, Brickner said.
"We treat the whole family, not just the affected child," Brickner said, adding that gifts and special occasions are also provided to the siblings.
Brickner said some parents will feel the need to stay with their child 24/7 in the hospital, but that's not healthy for them or the kid.
"Sometimes the children need a break from their parents and vice-versa," she said. "We encourage them to take a break, take a walk and get with people who want to help them. After time, they realize they're going to need someone to make meals or clean the house."
Hospital staff members encourage parents to speak to their kids about their illness on their level and not fib to them about it.
"If they find out that you lied to them, then they won't trust you," Brickner said.
The most common advice is to take it one step at a time.
"It is so overwhelming at first because you're meeting a lot of new people," she said. "Take in what you can for that day and learn. Don't look way down the road, but that's difficult when your kid has cancer and may die."
Brickner said parents oftentimes won't hear anything else when the news is broken other than their child has cancer.
"We like to give them a breather before telling them much other information," she said.
Brickner said the hospital offers pet and music therapy, musicians, sibling parties and other entertainment for the kids.
"We treat them like normal kids, which they are," she said. "They're just sick and can't go to school with friends."
Brickner said some affected families will be paired with each other for support — if they desire such camaraderie.
"It's difficult to get groups together," she said.
Brickner said she has lobbied for hiring family psychologists at the hospital, so she hopes that will become reality.
Families find their own ways to endure the difficult times.
Lenz said she has never been so exhausted in her life as the past month.
"Even when I sleep it's nightmare-filled and then Brystol is also having nightmares as well," Lenz said. "I feel like this six-month journey is going to feel like a lifetime at this rate."
What keeps her "trooping on," she said, is that Brystol's sisters, 6-year-old twins Arianna and Adalynn, are loving and helpful. They've cut and colored their hair to match Brystol, among other gestures of support.
"It just inspires me every day to be the best momma I can," Lenz said.
Both Lenz and Reid said the community and family support through fundraisers and emotional help have been comforting.
Erin said leaving her two other kids behind with family in St. Maries has been "gut-wrenching."
The Reids have put their faith in God.
"We realize this is all happening for a reason and all we can do is do our best to keep Bryson healthy," Erin said. "We have to remind ourselves every day that we can't change anything."
Erin said she's connected through social media with other families going through similar situations. That has helped her to both count her blessings and have hope.
"There's another mom from Lewiston whose child doesn't have a donor and they've been dealing with this for a year," she said. "There's also a boy from Hayden who had his transplant more than a year ago in Boston and he's doing great."
Endings of happiness, heartache
Sharlene Tiller's daughter, Brittni Wenstrom, who was diagnosed with cancer just before her third birthday, is now a 23-year-old cancer survivor.
Tiller and Wenstrom benefited from the annual Shalena's Breakfast with Santa fundraiser in Hauser. The event is now in its 31st year of helping families who have a child with cancer and held in remembrance of Shalena Mobbs, who lost her battle with cancer. Shalena was the daughter of Hauser Lake Fire Capt. Gary Mobbs and Tracie Payment.
Tiller said the fundraiser led to a lasting relationship with Gary and his wife, Ramona.
"We hit it off right away and we all felt like family rather than just friends," Tiller said. "We have stayed in contact all these years and I just can't say enough good things about them."
Tiller called the fundraiser "a huge blessing" because she was traveling with Brittni to and from the hospital in a beater car.
"I actually took the money they gave me so I could drive safe back and forth to Spokane," Tiller said. "Just the vibrations in the car made Brittni hurt really bad."
As for helpful words to families going through treatments, Tiller said to "be strong, don't give up, and pray."
"It's overwhelming," Tiller said. "Love on your child all you can."
But Tiller said she also knows it isn't that easy.
"I'll never forget the day I was sitting in the doctor's office with her asleep in my arms when he came back and told me (about the cancer)," she said. "I said, 'Is she going to die?' He said, 'I can't tell you that.'"
Mobbs said, nearly 30 years later, he remembers his emotional roller coaster vividly.
"The biggest thing I remember is that one minute life was good and the next minute it wasn't," he said.
Mobbs said he tried going to a support group to deal with the loss of Shalena, but it didn't help him.
"It had been 10 to 15 years for some since their child passed away and I felt they were not any better off than I was," he said. "I was looking for someone to say that it is going to get better. Unfortunately, there are days when it doesn't get any better."
The annual breakfast fundraiser, he said, is bittersweet, but it also helps him heal.
"It doesn't take that much to spark that deep-scarred emotion," Mobbs said. "It's not like that every day — you can go a month or two and not have an issue — but all it takes is seeing another child or the smell of a hospital."
Mobbs said Shalena was in seven different hospitals and the experience was a huge emotional and financial drain.
"Most people don't know what you go through unless they've been there and done that," Mobbs said.
Having been down that road, Mobbs said the fundraiser in Shalena's memory is a way to give other families a lift.
"Unfortunately, we lost Shalena, but look at what she has done for many families," Mobbs said.
Mobbs said he has a soft spot for single parents who battle ordeals of life-threatening illnesses with a child without a spouse or partner in the picture.
"Hold on to what you have and remember it one day at a time because it truly is," he said. "If things are bad today, they'll be better tomorrow."
Both Lenz and Reid said their children's endless energy and positivity — despite the difficult situations they're enduring — give them hope in the days ahead.
"Even when Brystol is scared in the hospital, she will say how nice the nurses are," Lenz said. "Even though she doesn't understand what this is, she still plays with her sisters and uses her imagination."
How to help
The Community Cancer Fund and Camp Goodtimes at Camp Reed are among ways residents can support area families whose child has a life-threatening illness. People can find out more online.