Nov. 23, 2015
Posted by Jennifer Huron
Nine-year-old Erin told her mom, “Mommy, I hate cancer. Why don’t doctors figure out what causes it?” Her mom said doctors are trying. But that was not enough for Erin. She and her best friend set out to raise money so that more families do not have to suffer.
This will be Erin and her family’s first Thanksgiving without her grandmother, Mom-Mom, gone too soon after battling pheochromocytoma (pheo), a rare type of cancer. She went undiagnosed for 10 years after being told her symptoms were extended menopause and anxiety. She died this year at only 60 years old.
“My family is willing to tell our story. My mom would want us to do that, even though she was very quiet about [her cancer] when she was alive,” said Julie, Erin’s mom. Julie hopes that by sharing their experience, it will raise awareness that “could literally save someone’s life and alleviate their symptoms.”
Julie remembers five years ago when her mom was diagnosed. “She did not want the [grand]kids to know. She did not want to scare them. We knew a lot of people who had had cancer.”
Earlier this year, on a trip to Mexico, her mom experienced a medical complication. Julie remembers, “My kids were here with me, seeing me on the phone and being upset, so we told them that she had cancer and that it had gotten painful and she needed to come home.”
Over the next few months, as her mom was in pain and stayed in bed, the grandkids started to withdraw because, as Julie put is, they did not understand what was going on and why their grandmother was no longer getting up.
A turning point came after a hard conversation with Erin. Julie recalls, “My daughter is the oldest of six grandkids, and she and my mom were very close. I’m the oldest of her daughters. One night, I was talking to my daughter and crying to her. She asked, ‘Is Mom-Mom going to die?’ and I said that I think she is.”
Erin said, “Mommy, I hate cancer. Why don’t doctors figure out what causes it?” Julie told her doctors are trying. But that was not enough for Erin and she wanted to do something. She and her best friend, Sophia, turned their hobby of baking cakes into a fundraiser.
For an entire week, the girls baked cakes and cupcakes and froze them until the night before the bake sale, when they decorated them with frosting. Julie remembers it was a family affair: her niece made cookies.
From there, the fundraiser snowballed. Julie remembers how people wanted to help. Friends and neighbors called to ask where they could make a donation. “It happened so quickly, so we started looking online for where to put the money.”
She looked up rare cancer and came upon NORD. Julie said, “NORD was very responsive and I remember thinking I like the fact they are looking at many different types of diseases. With my mom’s cancer being a NET cancer (neuroendocrine cancer), you can’t just look at one cancer. So, I thought if they have a research fund for pheo and have general research going on for rare things, maybe we have a better chance of finding a cure.”
“Now we feel like actually a good way to remember her every year,” Julie continued. “We will do the bake sale. My daughter is a runner and maybe we will do a 5K. We would love it if one day there was some protocol to catch this earlier.”
Knowing what the family knows now, Julie wants to reach more doctors and make detection easier. After the diagnosis, her mother’s doctor said he had never treated anyone with pheo in his entire career, and it was only something in medical textbooks. “He felt awful,” she said. “I think if there had been a better way to detect this… my mom would be ok.”
According to NORD’s genetic counselor, Marsha Lanes, who is part of NORD’s team working to develop new educational materials for physicians and medical students, pheochromocytomas are known to be difficult to diagnose. Surgery to remove the adrenal gland(s) is the treatment for pheos. To achieve good blood pressure control prior to surgery, the National Cancer Institute states that alpha-blockers are used to control blood pressure in patients with pheochromocytoma. Beta-blockers may be used if blood pressure can not be controlled with alpha-blockers or to keep the heart rate normal. Alpha blockers are always used before beta-blockers.
Blood and urine analysis can confirm a diagnosis of pheochromocytoma by detecting elevated levels of catecholamines or its metabolites in the urine and blood (plasma). A specialized test, the clonidine suppression test, may be performed to rule out other causes of elevated catecholamines.
“People [with pheos] can live long full lives. With my mom, it never got detected.” Julie wants doctors to consider doing a full urine test if they are already planning to do a blood work-up. For her mom, who had always been into health food and exercising, once the cancer had been detected, it was too late. The cancer had metastasized.
“My mom was only 60 years old, she was beautiful, she was so well loved in the community and nobody knew she was sick. They didn’t know for so many years that she struggled and couldn’t get out of bed. My sisters and I worry about the genetic [component].”
As for her family, her father how lives by himself, and Julie and her sisters spend a lot of time with him. Her mother had many traditions, especially around the holidays.
“The research is really important because it’s rare,” Julie says. “NORD is a great place to donate.”
Click here to donate to the pheo fund at NORD started by Julie and Erin.