Kylee Jacobson and her family say they are “back to square one” with the R.A. Long graduate’s cancer treatment after learning Wednesday that a nine-week period of chemotherapy failed to shrink her tumor.
In fact, the malignant mass on her leg grew 3 centimeters despite the treatments at a Seattle hospital.
“Basically we are starting at square one again. That’s how it feels,” Kayla Jacobson, Kylee’s stepmom, said Thursday. “Honestly, we are devastated. I feel like all the wind has just been knocked out of me. … We were scared before, but now we are terrified.”
Kylee was diagnosed with cancer in late May, one week before she graduated. Initially, doctors said she had a rare bone cancer called Ewing Sarcoma, but additional tests revealed that she actually had a more aggressive form of cancer called “cic dux4” sarcoma. That cancer starts in the soft tissue then moves to the bone.
In June Kylee was put on a 41-week treatment plan that included 31 weeks of chemo followed by 10 weeks of radiation. She had to move to Seattle to live near Seattle Children’s Hospital during her treatment. (Her father, stepmother and biological mother divide their time between their Longview homes and Seattle.)
Her blended family was told in June that there was a 50% chance the chemo wouldn’t work.
Even before getting results of Kylee’s latest CT scans and MRIs, doctors had considered adding another 10 weeks to her treatment. However, given the results of the scans, it’s likely her treatment will be extended even further, at least through the middle of next summer, Jacobson said.
“Yesterday was definitely a huge letdown for us,” Jacobson said. “We thought (because of) this last eight or nine weeks of chemotherapy ... the scans would be positive.”
Doctors are also considering changing Kylee’s treatment regimen, now that they know the first round of chemo didn’t work, Jacobson said. Their new plan includes a surgery to remove the tumor, which doctors originally decided against, Jacobson said.
Now, after more than two months of chemo, Kylee’s immune system is at a higher risk for infection after surgery, and healing from surgery will probably take longer, her stepmom said.
“They want to do is go in and cut the tumor out by a surgical procedure, and then they want to do radiation right after that,” she said. “Then we will start on chemotherapy, once the site is healed, for five days a week out-patient, 10 hours a day.”
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Jacobson said the new treatment will likely use three different types of chemo medicines — all of which will be new for Kylee. She was previously on a two-chemo treatment plan that included one medicine called “Red Death,” Jacobson said.
“Unfortunately cis dux4 sarcoma is so rare, (doctors) don’t have a lot of trials and research to be able to look back on and say, ‘This worked,’ or ‘That worked,’ ” Jacobson said. Though she can’t speak for the doctors, Jacobson said the family “feels like we are shooting in the dark” for treatment options.
But Kylee wants to go through with surgery and start radiation and new chemo, Jacobson said.
“We are just going to fight, and we are going to hope she beats this.”
Jacobson said doctors told the family that there is “really, truly no guarantee” this second treatment plan will work.
In a small stroke of good news, the CT scans of Kylee’s chest were clear, meaning the cancer hasn’t spread, Jacobson said. Doctors want to remove the tumor within the next two weeks to prevent any spreading.
Kylee and her parents are scheduled to meet with doctors Tuesday to discuss the next steps in detail, Jacobson said. In the meantime, the family is asking for support — both financial and emotional — from the community.
The family is collecting monetary donations through a GoFundMe account and donation jars at local businesses. That money will help cover medial costs, as well as rent for Kylee’s Seattle house.
Jacobson said the family also welcomes verbal encouragement from community members.
“We stay optimistic because of the help and prayers from our community,” Jacobson said. “In a small town like this, people rally around you because they really care.”