On the evening of March 4, don’t be surprised if you run into the likes of princesses like Aurora, Cinderella and Belle or super heroes like Superman, Batman and Wonder Woman … they’re all gathering at Southview Elementary School in Waconia to celebrate the 5th birthday of Jillian Taylor, who’s quite the heroine herself.
Jillian, the 4-year-old daughter of Luke and Megan Taylor of Waconia and sister to Delaney, was diagnosed with leukemia in April 2013. While the cancer is now in remission, the treatments continue and Jillian will likely be monitored for the rest of her life. However, Jillian’s experience is a powerful example of what can happen when a family and community come together to overcome life’s unexpected challenges.
Learning the Diagnosis
As recounted by Megan, Jillian entered her first year of preschool at ISD #110 ECFE in the fall of 2012. Jillian experienced a couple of colds and “bugs” but nothing seemed out of the ordinary. The following March, Jillian caught a “stomach bug” followed by high fevers and pain in her hips, arm, and lower legs. After visiting the ER, Jillian spent two days at Children’s Hospital. After returning home, Jillian developed a fever of 104 degrees.
“Through the persistence of our wonderful primary doctor, Jaimee McPadden at Lakeview Clinic, we got an appointment with a specialist at the University of Minnesota,” Megan said. “Because Jillian’s symptoms were worsening, crying off and on all night, high fevers, and pain during the day that brought on a limp, we called the nurse at the clinic for advice on anything to help her with symptom management.”
Within the hour, the nurse called Megan back and told her the appointment had been moved up two weeks. The Taylors were not expecting the news they heard at the appointment, which was held Friday, April 26.
“We thought we were going to be dealing with a juvenile form of arthritis and easily got the shock of our life when they identified leukemia cells in her bloodwork,” Megan recalled.
In what Megan remembers being “ a whirlwind of activity,” Jillian was admitted to the hospital, hooked up to IVs and her parents were given more information than they could process about leukemia. And the next day, the fears were confirmed: Jillian was diagnosed with pre B cell Acute Lymphoblastic Leukemia (B-ALL).
“Within 48 hours, the floor had dropped out from underneath us,” Megan said. “We were caught trying to make sound medical decisions, watch our daughter be in pain so severe morphine did not help, and know the best treatment course available may have long-term effects as well as causing her trauma in the immediate future.”
Jillian was hospitalized for seven days and as one would expect, it was an unimaginably stressful time.
“I have never been more terrified to leave a hospital, including as a new mother,” said Megan, who said the University of Minnesota Amplatz Children’s Hospital went from being a place they never wanted to visit to the place that served as their “safety zone.”
The Road to Recovery
Jillian immediately underwent surgery and had a device inserted under her skin that has a catheter directly connected to her vein in order to deliver the chemotherapy. After induction (an intense, 28 day cycle of powerful steroids and chemotherapy), Jillian’s cancer went into remission.
“Unfortunately, remission doesn’t mean the end of treatment for blood cancer patients. It is the beginning, really,” said Megan, who noted that Jillian is classified as “standard average risk largely because her age, gender and results from cytogenetic testing yield more favorable results and decreased duration of treatment.”
After induction, Jillian went into a consolidation phase that lasted one month in which the chemotherapy was focused on the central nervous system. Megan explained that the central nervous system is a place where leukemia cells like to migrate and hide after remission. The phase included weekly lumbar punctures (spinal taps) with intrathecal chemotherapy (pumped directly into her spinal column).
Additional phases followed before the “front line” treatment was finished. Now, Jillian is undergoing “long term maintenance” which will repeatedly cycle through treatment once a month in a clinic, lumbar punctures every three months, and many daily and weekly oral chemotherapy at home.
According to Megan, Jillian’s expected end of treatment date is July 3, 2015.
“In the meantime, any time she gets a fever over 100.5, which has happened six times to date, it could be a life threatening infection and we need to go to the clinic during daytime hours or the ER at Amplatz,” said Megan, who otherwise described Jillian’s overall course of treatment as smooth and expected.
“She is a typical 5-year-old girl who loves pink and purple, princesses, and trying new things,” Megan said. “She has just added ice skating lessons and will hopefully be doing some horseback riding this spring/summer.”
Jillian has recently experienced muscle contractures in her lower legs and as a result, she will need to wear braces as a side effect of one of the medications she is taking.
“Sadly, due to the nature of today’s treatment protocols, Jillian will have to be monitored for the rest of her life for late-effects and is at much higher risk than non-childhood cancer survivors to develop a secondary cancer,” Megan said. “Our greatest hope is to fill all of her days with joy, love, and kindness with the goal of EFS, or Event Free Survival, always in mind. Jillian is spirited, a fighter, sweet, kind, special, and the best daughter she could possibly be.”
Over the past year, the Taylors have gained wisdom from their experience.
“We believe and have witnessed the smallest act of kindness having an immeasurable impact on the days in which we feel sad,” said Megan, recalling a day when a woman unexpectedly paid for their lunch at Subway.
“Of course, she realized that this would be a pleasant surprise, but she had no way of knowing that I had just gotten another unexpected bill in the mail after I had promised to take the girls out to lunch,” said Megan, calling that random act of kindness a simple, but meaningful, coincidence for her.
“We will almost always err on the side of making the daily struggles sound less impactful then they are,” Megan added. “We do this because sometimes it is easier, we are grateful for what we do have, and we know that there are others with even more challenging circumstances.
“This does not mean we are not constantly grieving small things, noticing how the journey is changing our daughter, and keeping some of our pain to ourselves,” she continued. “We need people who are okay meeting us wherever we are at in the moment because the truth is it can change that rapidly.
“Most importantly, be aware that childhood cancer is a devastating and all too common diagnosis,” she said, encouraging people to support organizations such as Childhood Cancer Research Foundation and the Pennies for Patients Campaign if possible.
Megan encouraged parents who may have a similar experience to theirs to accept and reach out for assistance, seek out support for solace and understanding, and consider keeping a CaringBridge site to keep friends and family informed about the ins/outs of the loved one’s treatment, etc.
“Do not feel that you cannot carve your own way through the journey,” Megan added. “Initially, we were swept up in the current of learning the medical language associated with a significant illness. We wanted to be open and honest with Jillian about why she was hurting and hospitalized, however were reluctant to use the word ‘cancer’ with Jillian as we believe it has such a negative connotation. Even the idea that she has to ‘fight’ something in her body was something we were nervous about telling her as she has an extremely active imagination.”
The Taylors found resources to support a more positive outlook on both Jillian’s diagnosis and treatment.
“We use the image of ‘lazy caterpillar’ cells being the leukemia cells and the chemotherapy being super strong medicine that turns the cells into butterflies so they can fly away and the rest of the cells can do their job again,” explained Megan, who hopes to eventually base a story on this imagery for other children with leukemia as an alternative to some of the other resources available.
A Supportive Community
Megan said the community, including the folks at ISD #110 ECFE (who along with the MOMS Club of Waconia and Women of Waconia are sponsoring the princess and super hero party for Jillian next week), has been amazing to her family throughout the experience.
“We are overwhelmed by the generosity and thoughtfulness of this community,” said Megan, whose family has received gift cards, donations and other assistance from the community throughout the past year.
“But in particular, the ECFE family has supported us throughout Jillian’s early development, and we cannot say enough positive things about their programming,” she said.
Jillian started attending ECFE classes when she was about 18 months old. She was enrolled in preschool there for the 2012-13 school year but following her diagnosis, she was unable to return to class prior the end of the school year. In light of her treatment schedule and other factors, Jillian is currently being home schooled.
“We could not be more excited for the princesses and super heroes event on March 4,” Megan said. “We daily count the ‘number of sleeps’ until her party.”
All area families with young children are invited to attend the party, which will be held at Southview Elementary School from 6 to 7:30 p.m. on Tuesday, March 4, which is two days before Jillian’s 5th birthday.
The event will include a visit by Princess Nicole from www.PrincessPartyPals.com, who will share stories and songs. A variety of party games are also planned. Admission to the event is a donation to the Jillian H. Taylor Benefit Fund. ECFE requests that families register for the event to help with planning at (952) 442-0613.
The Jillian H. Taylor Benefit Fund was established in September 2013.
Following Jillian’s diagnosis, Megan took a leave of absence from her job as a pediatric occupational therapist and Luke has missed many days from his job as an environmental engineer to go to treatments.
“Given this significant change in family income, with ever increasing costs for parking, medications, gas, even food as the steroid treatment makes her hungry constantly, we were finding ourselves steadily decreasing the ‘gap’ savings we had in place,” Megan said.
“We found ourselves choosing not to do certain things with the girls,” she continued. “People in our extended circle of family and friends kept asking what they could do or if they could send money to help out with expenses. We use (the fund) as a say ‘Yes’ account. Yes to ice skating and gymnastics lessons, yes to her eating out at her favorite local restaurants or those on the way to or from treatment, and yes to spending our time with Jillian as she moves through treatment instead of having to focus on work full time.”
“Team Taylor,” as the family is known on its CaringBridge site, remains thankful to everyone who has supported them during this journey and they are looking forward to seeing family and friends at the party on March 4.
“We look forward to celebrating the spirit of community that Waconia holds with as many people as possible, and sincerely thank you for taking the time and energy to care about us and our journey through childhood cancer,” Megan said.
Contact Todd Moen at firstname.lastname@example.org