After accidents, cancer is the second leading cause of death in children ages 1 to 14; yet, only 4% of federal government cancer research funding goes towards studying pediatric cancer. Let’s break that down a little… According to the Coalition Against Childhood Cancer, $4.9 billion was the 2014 National Cancer Institute budget. 4% of those funds is roughly $196 million. Sounds like a lot, right? Keep in mind, however, the median cost of developing one new cancer drug is about $756 million. Which explains why fewer than ten drugs have been developed for use in children since 1980, and only four additional drugs have been approved for both adults and children. In three days, Americans spend at Starbucks what the federal government spends on childhood cancer research in one year. Stick It To Cancer believes children deserve more than 4% and families deserve to know the facts.
Our Story: Emma Parli
Emma recently turned 8 and loves arts and crafts, reading, fashion, all things Belle, playing with her Barbies, spending time with her family, and “Big Bear”. She has one older sister, Grace (10), one younger sister, Evelyn (6), and one younger brother, Yale (4). In May 2017, when Emma was 6, she was diagnosed with stage 3/4 Wilms Tumor.
For a few weeks before she was diagnosed, Emma was very lethargic. She couldn’t keep any food or drinks down, and her stomach was hurting a lot. Her parents thought it was appendicitis. They visited their pediatrician and urgent care multiple times but were told it was just the stomach flu or re-flux, and it should pass. The morning of Yale’s 3rd birthday party, Emma woke up with a grossly distended stomach and very swollen ankles/legs. She was rushed to her pediatrician again and some blood was drawn for tests and x-rays were taken. Then she returned home for the party to wait with her parents for the results. They didn't have to wait long until the pediatrician called and told them to immediately go to the emergency room. Their local ER called Ann & Robert Lurie Children’s Hospital of Chicago right away to request a transport team for Emma. Upon arrival at Lurie’s, the doctors initially thought Emma was experiencing liver failure. However, after multiple tests and scans, Emma’s parents were ushered into a private room where doctors uttered the words no parents ever want to hear: “Your child has cancer.” A tumor was discovered on Emma’s left kidney. There were also tumors and blood clots entwined in her vena cava which were blocking blood flow to her legs and other major organs, causing her body to completely shut down. Due to the proximity of the blood clots/cancer to her heart, Emma could not have immediate surgery to remove the tumor in her kidney. They were moved to the PICU for stabilization and began chemotherapy right away. In July 2017, Emma had major bypass surgery to remove her left kidney as well as the majority of the tumors and blood clots in her vena cava. She endured chemo and radiation treatments following the extensive surgery, suffered countless side effects from the treatments, and lost most of her mobility during the four months she was in the hospital. Emma’s last treatment was in December 2017, and she has been N.E.D (no evidence of disease) since January 2018.
Today, her family is tremendously relieved to report that Emma is doing amazing (Emmazing!)! She is back at school full time and has regained most of her mobility and all of her spunk! While she no longer needs to use her wheelchair, Emma will continue to go to physical therapy for some time due to the effects of one of the chemo drugs she received during treatment. Emma visits Lurie’s every three months to check-in with her cancer team and have scans done to make sure she is still N.E.D. Because of the chemo and radiation she received, she also has regular appointments with her kidney and heart doctors. For the most part, if you met Emma today and didn’t know her story, you wouldn't be able to tell all of the horrors she endured this past year and half simply by looking at her. Emma was lucky, her family feels very blessed, and they do not take any of it for granted.
For more information, visit caringbridge.org/public/emmaparli,
Our Friends: Emma's Memory
Last year, James Robbins Goaltending hosted an inaugural non-profit camp to benefit Emma Parli and her family while they spent four months at Ann & Robert Lurie Children’s Hospital of Chicago. During their stay, the Parli family had the pleasure of meeting another brave Emma (lovingly referred to as “Baby Emma”) who was battling a rare form of pediatric brain cancer. This year, Stick It To Cancer honors Emma’s Memory.
At nearly 4 months old, Sadie and Kyle Finke’s daughter, Emma, was diagnosed with a rare form of pediatric brain cancer called Atypical Teratoid Rhabdoid Tumor (ATRT) in April of 2017. Emma underwent three brain surgeries, a tracheostomy, three stem cell transplants with high dose chemotherapy, and countless tests and procedures. The family spent the majority of 10 months in and out of the hospital. Emma smiled through the worst of the worst and reminded everyone to do the same. She passed away on February 2, 2018 leaving behind a rare gift: her brain tumor untouched by the harmful side effect of radiation. Her parents donated the tumor to Lurie’s research team, so they can continue working towards a cure.
The goal of Emma’s Memory is to raise $300,000 to have a window seat named after Emma on the new wing of the oncology floor. It is the floor where Emma and her family spent the majority of the last 10 months. The place where her parents introduced Emma to views of the city she called home. The space where they found respite from the spiraling world around them. Sadie and Kyle want those who come behind them to feel the same comfort in the hardest of times. Ultimately, funds will go to the Pediatric Brain Tumor Program which sponsors research and clinical trials. Emma was surrounded by the incredibly talented team at Lurie Children’s and given access to cutting edge treatment opportunities. Her parents want those opportunities to be afforded to others.
Sadie and Kyle developed Emma’s Memory to surround her in this fight against pediatric brain cancer. At some point, Emma became enveloped by the imagery of elephants. No one really knows why or how. But, like an elephant, Emma endured the toughest of times with strength, grace, and beauty. An elephant is always surrounded by her memory and her herd to support her in all endeavors.
The mission of Emma’s Memory is to find a cure for pediatric brain cancer, so families can hug their children for years to come.
James Robbins Goaltending hosted an inaugural non-profit camp last year to help Emma Parli's family pay their bills while they spent four months inpatient at Ann & Robert Lurie Children’s Hospital of Chicago where Emma endured chemotherapy, an extensive surgery, and radiation. During their stay, they had the pleasure of meeting another brave Emma (aka "Baby Emma") who was battling a rare form of pediatric brain cancer. Baby Emma unfortunately passed away shortly after her first birthday.
This year, Stick It To Cancer honors Emma’s Memory by benefitting an organization dedicated to raising funds for the Pediatric Brain Tumor Program at Ann & Robert Lurie Children’s Hospital of Chicago which sponsors research and clinical trials. For more information about where proceeds will go, visit EmmasMemory.org and luriechildrens.org/en/specialties-conditions/pediatric-brain-tumors/.
James played professional hockey as a goalie for five years and now coaches. He believes the hockey community is capable of outreach efforts beyond the rink. Stick It To Cancer is a platform for raising awareness and funding for childhood cancer research, supportive efforts, and families.
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