Kokomo Tribune; Kokomo, Indiana

November 5, 2013

Woman diagnosed with rare cancer while pregnant

Saturday fundraiser to help with medical expenses

By Carson Gerber
Tribune staff writer

— It all came at once: the nose bleeds, the headaches and the large, intense bruises randomly appearing all over her body.

Cassandra Taylor didn’t know what was happening to her. But whatever it was, it was bad timing.

Taylor, a 30-year-old social worker with the Indiana Department of Child Services in Miami County, was six months pregnant and gearing up for her first baby shower for her daughter, Cynia, when the symptoms hit in September.

The bleeding and bruising were just too much to ignore, even with a baby shower just days away, so Taylor went to the hospital for blood work.

“I honestly thought I would go in and the doctor would tell me my iron was low,” she said in an email interview. “I would have my supplement changed, and go back home. I had it all planned out in my mind that if it was something worse, I would just ask them if I could go home and have my baby shower on Saturday and then come back. Boy, was that wishful thinking.”

The next day, she was lying on a hospital bed at St. Vincent’s in Indianapolis with a staggering diagnosis.

Taylor has leukemia, and not just any kind of leukemia. It is a very rare and aggressive form of the disease called acute promyelocytic leukemia. It only appears in around 700 people every year in the U.S.

Taylor said there are also only a handful of case studies on this type of leukemia in pregnant women in the U.S.

“Never in a million years would I have expected to hear that I had leukemia, and the rarest form at that,” she said. “Here I am, 5-and-a-half months pregnant, and my first thought was, ‘how would this affect our baby?’”

Taylor said the first few days were horrible because doctors couldn’t tell her and her fiancé, Jon, much about Cynia’s prognosis. There just wasn’t enough research to predict how she would react to the disease.

“Essentially, for baby Cynia, myself and Jon, we are writing the lines of our story one page at a time,” she said. “We are hopeful, however, that in the future, doctors and other pregnant women may be able to learn from the information gathered from our experiences.”

Since the diagnosis, Taylor has had three types of chemotherapy treatment in addition to other treatments necessary to keep her stable and prepare for the breakdowns her body will inevitably suffer.

So far, Taylor said, doctors are cautiously optimistic about Cynia’s progress, but they know she has the potential to come early and be small. Her official due date prior to the diagnosis was Jan. 18.

“We are hopeful that the womb is protecting her from the brunt of harsh chemicals going into my body,” Taylor said. “So far, our prayers are being answered, at least to some extent, because we saw last week that while Mommy is completely bald, Cynia has a full head of hair!”

Taylor said it could have been easy to get depressed about the leukemia diagnosis, but with baby Cynia on the way, she said she’s staying strong.

“She is by far one of my biggest motivators, as are my family, friends and other supporters,” she said. “When I got diagnosed with APL, I decided right away that I was not going to let it get me down. I would be lying if I said I don’t have bad days. But I think I do well managing those days between illness and pregnancy hormones!”

Taylor said her fiancé, Jon, a 38-year-old deputy in the Miami County Sheriff’s Department, has also been a huge source of support.

“Jon has been the epitome of strength for our family throughout this ordeal,” she said. “Jon is my rock … He looks at everything on the bright side and knows just what to say to make me smile when I’m having a bad day.”

Besides medical concerns, Taylor said she also worries about paying for all her treatments. She said the insurance cost for the take home chemo treatments are around $20,000 per month. In January, she’ll be responsible to meet her deductible and pay the co-pay to get it every month.

That doesn’t include all the other medication she’s on now.

“Unfortunately, not knowing when I’ll be able to return to work causes me concern, especially because while on disability through the state, I’ll also be responsible for paying my own insurance premiums to maintain coverage,” she said. “Also, we do not know what to expect regarding out-of-pocket expenses for Cynia’s care and treatment, depending on when she makes her arrival.”

To help pay for medical and day-to-day expenses, friends and family are hosting a benefit at 3 p.m. Saturday at the Greentown Lions Club building on the 4-H fairgrounds.

The benefit will include a bake sale, silent auction and magic show. People can also buy a lantern for $5 for a lantern release at sunset. Lanterns are limited, but people can reserve one by texting benefit organizer Jennifer Khatibi at 765-437-9147.

Despite the leukemia diagnosis and potentially hefty medical bills, Taylor said she and Jon consider the experience just a hurdle in the road.

“Jon and I are taking things a day at a time and counting down the days until we get to hold our precious little girl,” she said. “Every time I feel her move, or see her little body on an ultrasound, I’m reminded that I’m not just fighting for myself, and it makes me push even harder.”

Carson Gerber can be reached at 765-854-6739, or at carson.gerber@kokomotribune.com.

 

How to help WHAT: Fundraiser to aid Cassandra Taylor and baby Cynia WHEN: 3 p.m. Saturday WHERE: Greentown 4-H fairgrounds MORE INFO: The benefit will include a bake sale, silent auction and magic show. Lanterns to be released at sunset may be reserved by texting Jennifer Khatibi at 765-437-9147.