Mom, daughter face double cancer diagnosis together
Double diagnosis: Cancer strikes family twicePlay Video
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Summar Ruelle was in the best shape of her life when she got devastating news. The 35-year-old mother of two had just lost 60 pounds of stubborn baby weight via diet and rigorous exercise like kickboxing and running.
Then in late August of last year, the Beaverton, Ore., mom discovered a mass in her left breast. A mammogram showed nothing but an ultrasound and subsequent tests told a different story: Summar had Stage IV breast cancer which had spread to her lymph nodes, spine, ribs, hips and collar bone.
Careening from appointment to appointment, Summar suddenly found herself debating mastectomy, chemo and the removal of her ovaries with a clutch of strangers in white coats.
But a week later, all that seemed insignificant to her.
The Ruelles’ 3-year-daughter Sapphire, who’d been suffering from unexplained bruises and idiopathic fevers, had been to the doctor for some tests, as well, and the results were unthinkable. Sapphire had leukemia.
“I was absolutely devastated,” says Summar, now 36. “It was like my diagnosis became nonexistent at that moment. I wanted to cancel everything – my surgery, my treatments. I wanted to forget all of that. I felt I needed to be there for her.”
While the American Cancer Society has no statistics on simultaneous parent/child cancer diagnoses, Summar’s oncologist, Dr. Alison Conlin, says their situation is quite unusual.
“For a daughter and mom to simultaneously be going through this and for a mom to be that young and have advanced disease from the get-go, that’s very rare,” she says. “It all adds up to make it fairly unique, although I’m sure it’s not one of a kind, sadly.”
Stress, fear, financial hardship, dueling surgeries and treatments: such is life for families who’ve been slapped with a heartbreaking double diagnosis of cancer.
“People ask, ‘How do you do it?’ But we don’t have a choice,” says Summar. “It’s heartbreaking, but that’s how things played out.”
For Summer and her husband, Pascal, going forward is the only option.
Shortly after both mom and daughter were diagnosed, “we were literally in surgery at the same time at two different hospitals,” says Summar. “But it was necessary. We didn’t have the luxury of time. I couldn’t waste any more time and she couldn’t have any delays. We had to both go forward.”
Mom and daughter stayed in touch via FaceTime while friends and family shuttled back and forth between the hospitals and home, making sure everybody – including the Ruelle’s 6-old son, Jayden -- was being cared for.
Summar had surgery to remove her ovaries, one breast and 17 lymph nodes (her condition also forced her to leave a plum job as a business analyst with Columbia Sportswear). While her doctors decided against chemotherapy, she did go through five weeks of daily radiation treatment and is currently undergoing other treatments. Side effects and complications -- infections, debilitating leg pain and the pocket of fluid buildup, or seroma -- that she’s had since breast surgery have become a way of life.
Sapphire’s treatment plate is just as full. Although she’s past the first wave of heavy-duty chemotherapy (the kind that takes your hair), Sapphire still has a year and a half of “maintenance” chemo ahead of her, much of which will be administered by her parents.
Summar says she’s found support through social media sites like Twitter as well as a hospital group for women with metastatic cancer. She has yet to connect with another parent dealing with a similar set of circumstances, though.
“Our scenario is so unique,” she says. “I haven’t found any moms in my position. There was another mother with a sick child but then the child passed away. It’s really tough.”
Lost hair, lost friends
Not surprisingly, their 3-year-old, who has been on steroids since her diagnosis, has had her own problems grappling with the pain, the anger and the profound changes to her life. According to her mom, Sapphire was aggressive at first, taking her anger out on her parents.
“We would call it ‘roid rage,’” says Summar. “It was very traumatizing. The beginning was a real struggle.”
Misunderstandings about the treatment and its side effects didn’t help.
“At one point, she didn’t think her hair was going to grow back until she was an adult,” says Summar. “She started crying and my mom explained that when she stopped her medicine, it would grow back. But that was tough for her, she asked about the hair a lot.”
Being away from her school friends has been hard on the little girl, as well.
“She isn’t allowed to be around school children [because of the possibility of illness and infection],” says Summar. “That’s been tough on her and it’s hard for her friends to understand, too.”
With both parents out of work, the Ruelles rely on Summar’s disability as well as donations from friends, family and strangers to get by (Summar’s best friend has helped organize online fundraisers as well as a meal train for the family).
Summar and Sapphire draw strength from each other.
“Even though she’s 3, she gets this thing to a degree that she can comfort me and I can comfort her,” says Summar. “She can totally go and see me get my blood drawn and my seroma drained and be supportive. She told me, ‘Mom, you go to all of my appointments, why can’t I go to yours?’”
Sue Harden, a Los Angeles-based psychologist who specializes in chronic illness, says this kind of together-time is therapeutic.
“Being able to see what happens to her mom when she goes to those appointments is going to help reduce stress for her,” says Harden, who’s worked with families where both parents have had cancer, but never helped navigate a simultaneous parent/child diagnosis.
While the situation is “obviously very stressful for all involved,” she says there are strategies that can make a difference, such as reaching out for help and establishing new patterns and routines.
“You set it up so it’s not so traumatic for the child,” she says. “Every time you go the hospital, you might visit the fish. It just becomes a routine. For kids – they’re incredibly resilient – it becomes the new normal of their life.”
Summar acknowledges that if there’s been any kind of positive, it’s that their “cancer fiasco” has tightened the bond between mother and daughter.
"We have different cancers but we’re going through the same thing,” she said. “We take some of the same medicines. We take each others’ Band-Aids off. We talk about how we feel and about what we want to do when we feel better.”
Advocating and educating
Yet, there are key differences between mom and daughter’s diagnoses.
“It’s kind of strange, these two situations being run side-by-side,” says Pascal. “[Sapphire] has a 90 to 95 percent success rate with a road map for what they’re going to do. But with Summar’s situation, it’s living scan to scan. I wish there was a road map and a finish to it. But we just have to deal with it day by day.”
Undaunted, Summar says her big focus is raising awareness about stage IV breast cancer (toward that end, the family’s website has a host of information and links).
"People have an idea in their mind about what breast cancer is,” she says. “You get a mastectomy and then new boobs and then you’re fine. But that’s not it. At first, a lot of people didn’t understand what mets [metastasized breast cancer] was. They were like, ‘You’re going to beat this, Summar!’ and I had to educate them. I’m Stage IV cancer. I’m going to be in treatment the rest of my life.”
Despite the unknowns, the ubiquitous doctors’ appointments, and the stress of dealing with cancer every day, the Ruelles are quick to point out their blessings.
Friends in the community support them with meals and fundraisers and Sapphire’s hair is finally growing back, much to her delight. Last month, the family went to Florida to visit Walt Disney World through the Make a Wish program. Come September, Sapphire will be back in school allowing Summar to take on a new volunteer position coordinating fundraising and awareness events for the research and support group, Metavivor.
“I’m excited about that,” she says. “I have something to focus on as I look toward the future. To give me more hope. I’ve always been a working woman and wasn’t really ready to stop working. This gives me an opportunity to feel like I’m making an important difference.”
Diane Mapes is a frequent contributor at nbcnews.com and TODAY.com. She's also the author of "How to Date in a Post-Dating World" and writes the breast cancer blog, www.doublewhammied.com.