“In a year, we hope to be home … playing … snuggling … watching movies … going outside … she wants to go to Hawaii and swim with the dolphins.”
Casie Munson, 37, has big plans for the future – and all of them revolve around her 6-year-old daughter, Jaelee.
For now, though, all she can do is take one day at a time.
“Before this, I used to have a plan,” Casie says. “But there is no way. We surrender our worries to God. Why sit there and worry yourself to death? I have to stay 100 percent for my little girl in there, and she sees that.”
In April 2016, Jaelee was diagnosed with metastatic neuroblastoma, an aggressive form of cancer that’s been ravaging her little body ever since.
Her story has touched millions around the world – and it’s easy to understand why.
On Dec. 12, 2009, Casie and Kevin Munson of Quapaw, Oklahoma, were married after meeting years before at a Lynyrd Skynyrd concert. Shortly thereafter, they decided to expand their family, and on June 7, 2010, Jaelee was born.
'Doctors brushed it off'
“She was a very awesome baby,” Casie says. “We bonded great. I breastfed her for 15 months.”
The first couple years as a family of three were incredible – until Jaelee started developing frequent fevers.
“They started happening every three months,” Casie says. “Then monthly, then every two weeks. Finally, doctors ran blood tests, diagnosed her with anemia, and then said it was viral. I wish I would have pushed harder.”
During summer 2015, Jaelee was diagnosed with mono. Her belly was beginning to swell, but doctors brushed it off.
“They blamed it all on the mono,” Casie explains. “Our primary care doctor said to go to Missouri for a second opinion, and they wouldn’t even look at her. They saw no bad signs or symptoms worth exploring.”
Sometime around Easter 2016, Casie was giving Jaelee a bath and noticed that her right side was protruding.
“It was just sticking out,” she says. “I called my husband, and we were freaking out. We called the doctor, they told us to come in Monday and to calm down.”
An x-ray showed abnormalities within Jaelee’s abdomen - all her intestines were being pushed down. She was then sent for a CT scan, which revealed a cantaloupe-sized tumor on her adrenal gland.
Casie and Kevin were in shock – but the tears didn’t come right away.
“I was like, ‘what do we need to do right now?’ ” Casie recalls. “I didn’t want to go into a hole and cry – I was ready for battle, ready to go. Pointing fingers wasn’t going to fix anything.”
The family decided Kansas City was the best place for treatment, so they dropped everything at home and headed north
'Sink or Swim'
On April 5, Jaelee was diagnosed with metastatic neuroblastoma. It was between stages three and four.
She would begin chemotherapy to shrink the tumor before having surgery to remove the mass. After five rounds of treatment, it shrunk by 78 percent.
On Aug. 19, Jaelee went into surgery.
“She lost a lot of blood,” Casie says. “The doctor had her kidney in his hand – he said he had to give her kidney a haircut from the cancer. It was either sink or swim – she was bleeding everywhere.”
Thankfully, surgeons were able to remove the tumor in its entirety – but Jaelee’s struggle was far from over.
She resumed chemotherapy after recovering from surgery, and almost immediately, something wasn’t right.
“She was so nauseous all the time,” Casie says. “She should have been healing from the chemo, but she was getting sicker.”
Doctors discovered a hematoma that formed after the surgery. They drained it, but Jaelee’s condition didn’t improve. On Sept. 19, another massive hematoma was removed from her side. Once that was drained, Jaelee was finally able to go home.
But just as things were looking up, the family faced another unforeseen tragedy.
The Final Kill
“While she was recovering,” Casie says, “our house caught fire. It was an electrical fire, and we lost so much. All the appliances … most of what was plugged in.”
It was a devastating blow in the midst of an already tumultuous time, but they had to remain strong for the sake of their baby girl.
Jaelee’s treatment plan included two stem cell transplants – one on Oct. 26 and another on Dec. 22. They are intense procedures – doctors must harvest the cells, insert a catheter in her neck and extract the stem cells.
Before each transplant, Jaelee had to endure very harsh chemotherapy.
“They call it the final kill,” Casie says. “It’s so strong so they get everything out. With neuroblastoma, the relapse rate is 40 percent. By having two transplants, the risk for relapse goes down.”
200 SEIZURES: Family fears from every moment of daughter's life
Jaelee has been in the hospital since her first transplant in October because the effects take such a toll on her small body.
“The chemo basically wipes out all her bone marrow,” Casie explains. “And you wait for new cells to start growing. After eight days, she usually starts getting her cells back. It’s amazing – her bottom is raw, she has sores … then she starts getting better. After the second one, she was a mess off the bat. The chemo went 24/7 for four days. It only stopped so they could refill the bag.”
Jaelee is referred to as the “mystery fever girl” because her temperature spiked to 105 degrees after the second round. She also developed a severe case of mucositis, or painful inflammation of the mucus membranes in the digestive tract. It’s a reaction to the strong chemotherapy.
The blood vessels in Jaelee’s eyes were ruptured from vomiting so much.
“She would count how many times she threw up,” Casie says. “ ‘OK mommy, that was 15,’ she said to me. But it was so much more.”
In late December, Jaelee went into heart failure, but thankfully, she turned a corner and is currently awaiting the next phase of treatment.
“Now they are waiting for her to get stronger and do radiation,” Casie says. “She needs to get a little better. They have a window to start it. Scans are stable, and there has been no growth. They think she needs 12 doses of radiation.”
It’s impossible to determine Jaelee’s prognosis because she is still in the midst of treatment, but for Casie, every day is a blessing, and all she can do is take baby steps toward the future.
A Year From Now
“In a year, we hope to be home, playing, snuggling, watching movies, be outside,” she says. “Jaelee wants to go to Hawaii and swim with the dolphins.”
Taking things one day at a time and having faith are critical to remaining strong.
“One day at a time,” Casie stresses. “I am a Christian and I couldn’t imagine doing any of this without God. Before this, I used to have a plan – but there is no way. You have to take one day at a time. It gets me through. We surrender all our worries to Him. Why sit there and worry yourself to death? I have to stay 100 percent for my little girl in there, and she sees that – we are teaching her the Lord. We were in the playroom and a little boy had lost his hair – he said he didn’t want anyone to see it. She came to me and said, ‘when we get back to the room, I’m gonna say a prayer for him so he will be happy for his head, and he won’t be scared. She went and laid on the bed and closed her eyes and prayed for him. It makes me feel good.”
To learn more about Jaelee's story or to make a donation, visit the family's GoFundMe page.