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She Loves Life As Told by Mom Caroline

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She Loves Life As Told by Mom Caroline annual report Issue #10 • Summer 2019 She Loves Life As told by mom Caroline ora was always super energetic, healthy, happy, and brought an oncology team right away to meet us, so we a good sleeper. We felt pretty lucky, and decided that knew that it was cancer. we could have another kid. When Nora was two, her It was a Tuesday night and they scheduled brain surgery for brother Mac was born. When Mac was three months Friday. Nora deteriorated very quickly. By mid-day Wednesday, Nold, we noticed that Nora started limping. We thought it was she started becoming not very responsive. The neurosurgeon odd, so we called the pediatrician. They had X-rays done of came in and said, “We can’t wait until Friday.” They operated her leg and her hip and couldn’t find anything. That week, she on her right away and got the whole tumor out, which was woke up sick from her nap, and her left arm was limp. We took such a blessing. We naively thought, “Great, they got the her to the emergency room right away and they did a CT scan. whole tumor out, that means the hardest part of our journey They had her in a bed and she wouldn’t let me leave her is probably over.” That’s when we met Nora’s oncologist and side. It got scarier and scarier pretty quickly. They brought they let us know the type of cancer. ETMR (Embryonal Tumor in a bubbly nurse to sit with Nora and asked my husband with Multilayered Rosettes), super rare, super aggressive. They Alex and me to leave the room and come with them. I think said that her tumor was probably only growing for about six we knew at that point that something was seriously wrong. weeks, and it grew to the size of a navel orange. There are no They took us into a room and they said they’d found a large protocols to follow for ETMR. The cases that the doctors had mass on her brain. They didn’t know what it was, but they dealt with had not been successful. (continued on page 4) There With Care Annual Report • Summer 2019 • therewithcare.org 1 from our executive director t There With Care, our goal is to build a community around families and children facing the critical illness Aof their loved one. We begin by providing basic support, because, as so many families have shared, basic things can be overwhelming when a child is diagnosed with a life-threatening illness. When a child is suddenly hospitalized, a family is in crisis and often one parent must leave their job to care for the child. Many families are isolated and quickly find themselves in financial distress, and that’s where the need for community begins. Hundreds of volunteers and groups come to There With Care throughout the year to help underwrite and assemble program items that are delivered to families. The groups collaborate Little Brother Mac, Mom Caroline, Nora, Dad Alex, and Paula to fill toiletry kits with necessities; housecleaning bags with products to help parents keep their home safe from germs when their child’s immune system has been compromised auto repair costs and bring more community compassion to due to treatments; and Easy Meal Care Bags filled with non- the family through this kind of support. perishable foods so parents don’t have to leave their child’s Through the gifts of time and resources, our ever-growing hospital bedside. Groups also assemble Activity Bags filled community helps ensure that families are not alone as they with games, books, and puzzles for patients and siblings struggle with the unknowns of the medical diagnosis. One during long hospital stays. thing is consistent: caring community support. This support There With Care volunteers help deliver groceries and Crock- happens because of so many people who care about these Pot meals (including new, donated Crock-Pots), to ease the families, and each family feels this care through meaningful stress on families seeking to avoid taking their ill child to the services that truly ease their burdens in a frightening time. grocery store, where they might be exposed to germs. This We are humbled each day by the trust of our community of support also reduces the financial stress of buying groceries. supporters, volunteers, and the families we serve. Thank you Each week “Team Chop” volunteers meet in commercial for being a part of our community of care. kitchens to make, bag, and freeze nutritious meals for families. We are so grateful. When parents have a prepared meal on hand that they can let cook all day, then they have more time to focus on their ill child and siblings and can come home after a long day in the Warmly, hospital to spend more time together as a family. By helping to cover transportation needs with gas assistance, bus passes and auto repairs, we are able to give parents peace of mind, knowing they can get their child to treatments that day, that week, that month. Through our valued partnerships with Paula DuPre’ Pesmen auto repair companies and dealerships, we are able to reduce Executive Director and Founder 2 The AnnualThere Report With Care is published Annual Reportonce yearly • Summer by There 2019 With • Care therewithcare.org • Issue #10, Summer 2019 teer • dona lun te vo • in • VOLUNTEER • -k h i • Family Support c n a d • Group Opportunities e d r • Event Opportunities t o n • Administrative and Warehouse Support u a o t i y o t i • DONATE n n s u • • Contribute Financial Support m e v m • Donate Stock e o n c t s • • Underwrite Program Items • s t g n r a • Provide Company Matched Gifts • Make Automatic Payroll Donations • Include There With Care in Planned Giving • Join Care Club, a Monthly Giving Program • IN-KIND DONATIONS • Hold a Drive • Be a Care Bin Ambassador • Support the Holiday Program • Donate Program Items • Donate Company Products and/or Services • EVENTS • Sponsor or Attend Care Cup Challenge Golf Tournaments • Sponsor or Attend Red Carpet Adventure • Sponsor or Attend a Community Event • Create Your Own Community Event • GRANTS • Make Introductions for Grant Opportunities • Make Introductions for Family Foundation Opportunities • Talk to Your Employer About Company Grant Opportunities • COMMUNITY OUTREACH • Share Our Mission in Your Community • Host a Lunch-and-Learn at Your Workplace • Bring in a Friend for a Tour of the Warehouse We welcome you to join us! To learn more about any of these opportunities to get involved, please visit: therewithcare.org Top to Bottom: Allison and Staff with Bravehoods, Medtronic Employees Volunteering at Team Chop, Channel Maven Making Art Activity Kits, Z2 Entertainment Chopping at Team Chop There With Care Annual Report • Summer 2019 • therewithcare.org 3 She Loves Life (continued from page 1) BOARD OF DIRECTORS Board Chairperson Pam Bernal Board Director John Marlow Board Director Michael Barnathan Board Director Jody Mathie, M.D. Board Director Amy Carpenter Honorary Board Director Diane Nelson Honorary Board Director Chris Columbus Honorary Board Director Mimi Roberson Board Director Paula DuPre’ Pesmen Board Director Anne Trujillo Board Director Geoffrey Hansen Board Director Jacqueline van Someren Board Director Kirsten Heckendorf Board Director Stephen Webster Board Director Chris Himes ADVISORY BOARD Cate Buck, Jane W. Butcher, Adam Fell, Daphne A. Haas-Kogan, MD, Anne Hanson, Linda Gray, Wendy Kahn-Robson, Mary Lee, Tommi McHugh, Devon Murray, Caritina Yanez, Dr. Julie Zimbelman, MD STAFF Executive Director Paula DuPre’ Pesmen Vice President of Development Dana Bacardi Vice President of Operations Joan Haug Vice President of Programs and Volunteers Mary Beth Appel Development Directors Millicent Kang, Mellenie Goebel Community Development Associates Katie Hegg, Angela Dieck Grants Directors Kristina Miller Olsen, Bill Campbell, PhD Programs Manager Julie Rich Program Coordinators Julie Hess, Jill Nepper, Virginia Leffler, Alli Angulo Events Director Shanna Lawless Marketing/Communications Director Sue Lepping Controller Bonnie McNellan Operations Manager Kris Carius Systems Manager Robin Spitz Operations Support Coordinators Jack Kim, Liz Ward Community Space Coordinators Rachel Siler, Chris Wells Sweet Nora Volunteer Managers Susan Domeracki, Karyn White We were dumbfounded. ETMR. We’d never heard of it, I think Volunteer Groups Coordinators Cindy Jones, Danielle Calabrese Volunteer Associates Beth Botansky, Lisa Jones most people haven’t. Brain cancer. How on earth was this our Team Chop Coordinator Cheryl Markel real life? We went with the protocol that included 51 weeks Bookkeeper Maureen MacMackin of intense chemotherapy and proton radiation. But, they didn’t ADDITIONAL SUPPORT have proton radiation in Colorado, so we were going to need Creative Director Dan Ragland to travel to Children’s Hospital in Cincinnati for six weeks Care Ambassadors Boyd Adams, Kiana Akina, Rich Bogen, Anne Chandler, Cindy Davis, Cy DeBoer, Bailey Kodo Foley, Sunhee Hodges, Lisa Jackson, Melody Jamali, Mike Jamali, of radiation, with our now four-month-old baby Mac. It was Jay Mills, Ellen O’Connor, Martha Parsley, Matt Rich survival mode. Youth Ambassadors Isabel Chandler, Olivia Davis, Ethan Durrell, Eloise Hodges, Natalie Hodges, Madelene Kleinhans, Ben Roberts After we kind of understood this was going to be a fight, and IT Support Sal DeVincenzo that we were not out of the woods, they operated and put a port Volunteer Trainer and Spanish Translator Lori Kashman directly into her brain. Nora has a chest port where she received Warehouse Managers Monica Butler, Marsha Ambraziunas Warehouse Support Janice Andreyko, Tom Arizmendi, Gale (Gwin) Beauprez, chemotherapy, but to get past the blood-brain barrier, they felt Spencer Campbell, Jan Clason, JoAnn Dinser, Renee Dreher, Timolyn Esson, like they needed the second port on her head to get chemo Quinn Evans, Jessica Fredrickson, Brandy Gara, Michael Garland, Gary Gaudin, directly into the ventricles in her brain.
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