It’s not the life Rachel Hachey imagined her children would have growing up, battling a disease of sunlight called Rothmund-Thomson Syndrome (RTS).
Her daughter Jayce was diagnosed at 20 months and her son Nicholas at 8.
“It is a rare syndrome that causes cancer and since 1856 there have been 300 documented cases of RTS,” Hachey said.
She said the syndrome has left her two sons prone to bone and skin cancer, along with a series of medical hurdles during their short lives.
Children with RTS need to limit their time in the sun, as their bodies can quickly overheat and experience bone pain along with slow growth, and should be screened for cancer.
On warm, sunny days when most kids are outside playing, Hachey said her kids should be extra careful and hide from the sun to protect themselves from a terrible medical outcome.
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“They know their daily routine: sunscreen, good skin care, limit time outdoors. They have really made the best of the hand they have been given,” Hachey said.
Despite her mother’s best efforts to try to avoid a cancer diagnosis, 14-year-old Jayce was diagnosed with osteosarcoma, a malignant bone tumor in her left knee last June, news the mother described as “the worst parental nightmare.
“We are in a battle for his life,” he said.
“For us this is a path that we know because we lost our oldest son in 2001 to a malignant brain tumor. So to hear those words again… that we could lose another child is just overwhelming,” Hachey said as his eyes filled with tears.
He went on to say that Jayce’s cancer diagnosis was delayed due to COVID, causing her knee pain to increase. The long waiting period only increased the stress on the family.
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But the Hacheys are now headed to Saskatoon, where they will remain for 12 weeks of chemotherapy treatment and then knee surgery. An expensive stay that has led them to ask the community for help by starting a GoFundMe page.
Hachey explained that the family will need to spend a lot on hotels, in addition to other travel and living expenses.
Jayce’s treatment will take Hachey away from her job as a nurse. She adds that, despite her financial concerns, her mother should be there for her daughter to support her as much as she can during Jayce’s battle with cancer.
“What they want to see in the tumor is basically 90 percent dead and then we decide if it’s going to be limb-sparing surgery or Jayce loses her leg and then additional chemotherapy,” Hachey said.
He said additional weeks of chemotherapy will be needed after knee surgery due to the fact that osteosarcoma is a type of cancer that can spread to the lungs and other bones in the body.
Jayce’s doctors say she has a 70 percent chance of beating the cancer, odds that help the family remain optimistic.
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