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Page 1: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

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We’re grateful to the Child Life Specialists who lovingly serve HopeKids children, and who refer new families to our program.

Kim Froehle knew she wanted to be a Child Life Specialist the moment she

read a pamphlet in her high school guidance counselor’s office.

“People say all the time: ‘How can you work as a Child Life Specialist?’,” Kim said. “I tell them, ‘Come with me for a week and you won’t want to leave.’”

Kim is one of approximately 20 Child Life Specialists at Phoenix Children’s Hospital. Her job is in the Outpatient Cancer and Blood Disorders Clinic. Child Life services aren’t billed, but hospitals offer them because of the proven value of supporting patients for the duration of their medical journey.

March 2016Arizona

www.facebook.com/HopeKidsArizona twitter.com/HopeKidsAZ www.youtube.com/user/HopeKidsInc

• ArizonaCoyotes• ArizonaImpact• ArizonaStateUniversity• Children’sMuseumofPhoenix• ClearSolutions• ColtenCowellFoundation• Duet

• EastValleyChildren’sTheatre• FiestaBowlCharities• LamarAdvertising• MusicalTheatreofAnthem• ParadadelSolRodeo• PinnacleHighSchool• PhoenixSuns

As a cancer survivor, Kim remembers the overwhelming thoughts and feelings but today, she believes cancer was a blessing because it helped her me be more sensitive to her patient’s needs.

“When I meet a child and a family, they’re so afraid,” Kim said. “They don’t

have to say a word. They’re scared. They look at you like, ‘What do we have to do?’

Kim’s tender presence and steady smile help her earn trust. She also has a “no surprises” approach. With the help of Quackers the duck, Kim

can educate a child about his port, surgery, needles and chemotherapy—

so there are no surprises with what’s ahead.

Nine-year-old Liana Gold was introduced to Kim and Quackers a few weeks after her diagnosis of Acute Lymphoblastic Leukemia. Her mom, Mazal, admits she was initially skeptical that a stuffed duck with a port would help Liana understand.

“Believe me, it actually works,” Mazal said.

“Kim explained the whole process, and made it easy for

Liana. I was kind of speechless.”

Visits with Kim are a regular part of Liana’s treatment. They address questions, discuss next steps, and recap highlights. In a recent visit, Kim listened intently while Liana shared her excitement about attending the Junie B. Jones musical with HopeKids.

Kim acknowledges challenges in her job. However, she feels it’s important for people to understand the inspiration she receives from the children she serves.

“The kids aren’t walking around depressed and crying,” Kim said. “For the most part, there is so much to love. They’re all our kids and we want to make [life] positive for all of them.”

CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe

• PhoenixOpen• ProsportManagement• SpotlightYouthTheatre• RainyPartners• RenaissanceHotel• Ultra-StarMulti-tainmentCenter• ValleyYouthTheatre

Page 2: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

HopeKids ArizonaP.O. Box 28471Scottsdale, AZ 85255

Phone: 480.282.3011Fax: [email protected]

Copyright © 2016 HopeKids. All Rights Reserved. www.hopekids.org

MEET ChrisTiano17-year-old Christiano loves acting, watching movies, writing poetry and hanging out with friends. He was diagnosed several years ago with a spinal cord syndrome.

“HopeKids has been a part of our lives for years. So many times it was the only thing that kept Christiano going. We have made many friends and memories. Years ago it was hard for Christiano to go out in public. He would cry if he had to go to the store with me, but he would always want to go to a HopeKids event. It was at an event (peter pan at theater Works) that Christiano became interested in acting. He did 16 stage plays and now is doing film and loves it!” – Christiano’s mom, Cindie

HopeKid Austin, age 7, with the pinnacle peak High School Baseball team; HopeKid Avery with Senior Manager of Child Life at Banner thunderbird Medical Center; HopeKid Chloe, age 2, at the Children’s Museum of phoenix; HopeKid Izak, age 10 at the Coyotes Game; HopeKid tanner, age 7, with Coyotes Cheerleaders at Ultra-Star Movie event hosted by the AZ Coyotes; HopeKid tanner, age 5 with sister, Whitney, at the fiesta Bowl Superhero party.

HopeDay program

donAte

“Izak has been very sick lately so this outing was something he was

really looking forward to.”

“Austin had the biggest smile on his face all day today and we had such a great time.”

Page 3: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

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Markus Bachman has the makings of a true Renaissance man. He’s 16, in 10th grade, and

his sights are set on graduating high school with an associate degree. That’s just the two-year plan. Cast the net a little further out, and he dreams of working for an automotive magazine, like Car and Driver or Motor Trend, and living on a hobby farm with his family, where he can preserve the endangered breed of the Silver Fox rabbit.

Markus has the kind of zest for life that most people yearn for. Like many HopeKids, his medical condition challenges him—but it doesn’t stop him.

“I usually tell someone who doesn’t know my condition that it is a breathing problem,” Markus said. “If they want to know more, I tell them, but only if they want to know more. My trachea and esophagus never separated, so it had to be surgically separated the day I was born. I’ve also got a small stomach, so I have a feeding tube to get food in.”

Markus finds his support in his close-knit family: parents, Mike and Deb, and siblings, Heather and

March 2016Minnesota

www.facebook.com/HopeKidsMinnesota twitter.com/HopeKidsMN www.youtube.com/user/HopeKidsInc

Noah as well as a love of contemporary Christian music.

“Contemporary Christian Music inspires me because the music reminds

me that God is with me,” Markus said. “[I] often

feel His presence through the music. The music helps me keep my focus on my

faith in the storms of life.”

One of the storms came a year and a half ago requiring Markus to have two-thirds of his right lung removed.

“In January 2015, my family and I went to a HopeKids prayer event. I was filled with hope because my surgery to remove part of my right lung was only a few weeks off. I left full of hope, anticipation, and peace about the surgery.”

In the year since his surgery, Markus has stayed active in 4H and participating on the high school bowling team in addition to his other eclectic

interests. However, another difficult bout of illness hospitalized him this winter, and there are uncertainties about the condition of his lungs for the future.

“The word ‘Hope’ to me means to be able to look at the positives in a cruddy situation and not worry about the issue at hand,” Markus said. “[I] realize it’ll be fine in the end. God is in control, and he shall remain in control. Even if he steers me somewhere I don’t expect, I will accept it, even if I don’t want it - even a [lung] transplant.”

HopEKId sEEs HopE THrouGH THE sTorMs

Mark

us pa

rticipating on his High school Bowling Team

HopeKids Voted Allianz “Employee-Elected Charity”Each year Allianz employees vote for their favorite charity. For the seventh year in a row, HopeKids Minnesota was elected. This year’s honor comes with a grant of $25,000 and a commitment from employees to continue their volunteer service with HopeKids. over the last seven years, Allianz employees have donated over 1,000 hours to HopeKids Minnesota. pictured: HopeKids Minnesota Executive director, Brian Anderson with suzanne dowd Zeller, Chief Human resources officer at Allianz

Page 4: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

HopeKids MinnesotaP.O. Box 44712Eden Prairie, MN 55344

Phone: 952.270.8271Fax: [email protected]

Left: HopeKid Emmy and her brothers at the stadium series Alumni Game at TCF Bank stadium provided by the Minnesota Wild; Below (Left to right): HopeKids enjoy a day of ice fishing hosted by simply outdoor Experiences; Trevor and his brothers in the “Hopesuite” at the High school state Wrestling Tournament; The HopeKids MN team - Brian Anderson, Carleigh McCormick and Julia Koch - pose with Timberwolves point Guard, ricky rubio, during the Mall of America Takeover 2016 sponsored by the Minnesota Timberwolves.

What Does hoPe Mean to You?

hoPeDaY PrograM

“Hope means that we simply reach out and grasp the comfort- offered to all- through knowing and trusting Christ.”

“Hope means the feeling of encouragement to see Luke having a good time - from a Friday night game, to the Hope picnic, to the power of Relentless. The bonds and friends we have made will be for a lifetime.” “Hope means more days on the water, frozen or not.”

Copyright © 2016 HopeKids. All Rights Reserved. www.hopekids.org

doNATE

“Hope means to choose joy as you wait, knowing that something good is going to happen.”

“Hope means a light in the darkness. It’s the continuous strong light of faith that keeps our family positive.”

Page 5: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

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When Dovie Scism is asked to explain her daughter’s medical condition, she responds with a question: “Have

you seen the John Travolta movie, The Boy in the Plastic Bubble?”

John Travolta’s character’s immune deficiency is so severe he’s confined to a sterilized bubble. While 13-year-old Allie Scism doesn’t live in a bubble, her Primary Immune Deficiency Disease has to be managed with meticulous care.

“When you’re around a bunch of people, you may catch their cold and you’re sick for four to five days at the most,” Dovie said. “For Allie, it can be weeks at a time, or she may have to go to the hospital for IV antibiotics.”

At age 5, Allie was finally diagnosed with the condition that had kept her perpetually sick. Since birth, Allie had battled chronic respiratory illnesses, resulting in hospital stays

March 2016North Texas

www.facebook.com/HopeKidsNorthTexas twitter.com/HopeKidsNTX www.youtube.com/user/HopeKidsInc

and sinus surgeries.

“One day she went on a field trip, and when we came home, she got sick,” Dovie said. “The next thing I know, they’re admitting her to the hospital. That’s when they finally ran the proper blood work.”

Allie has to wear a vest to break up the mucus in her lungs. She takes

pills everyday, does inhaler treatments, and receives immunoglobin shots to prevent infection.

Additionally, Allie goes to the clinic for blood infusions every three

weeks. One infusion contains the plasma of 10,000 to 20,000 different donors. With thousands of other peoples’ antibodies running through her body, she is given enough immunity to be able to attend school and go to church. Even with all of Allie’s treatments, the Scisms have to be militant about avoiding crowds and germs.

“No matter how bad it is, Allie can find something bright about [her life],” Dovie

said. “She’s just really a good kid. At church when we get to go, everybody just lines up, wanting to hug her. It’s like everybody wants a piece of it. “

Often in the winter months, she has to wear a mask where people wonder ‘what’s wrong with you?’ The exception is at HopeKids events.

“It doesn’t matter if you have a mask on, or you’re hooked up to 10 machines,” Dovie said. “It’s great to have that acceptance. We don’t have to worry about what the public perceives. I signed up for roller skating. At first she was kind of nervous to go, saying, ‘I don’t want anybody to laugh at me.’ I said, ‘Honey, it’s for HopeKids.’ That in and of itself was a relief for her. ”

HopeKID FINDS Hope IN All CIrCuMSTANCeS

• AT&T performing Arts Center• eva eastman photography• embassy Suites DFW Airport North• SMu Athletics• Watoto Children’s Choir

• Good Shepherd episcopal Church• Jurassic Quest• Building Smiles Foundation• Alamo Drafthouse Cinema• Michael Jr. Comedy

• Jumpstreet Colleyville• Nasher Sculpture Center• Skatetown• Artreach Dallas• Allen Americans

The S

cism Family: Dovie, Allie and Darrell

Page 6: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

HopeKids North TexasP.O. Box 1628Keller, TX 76244

Phone: 817.739.8123Fax: [email protected]

MEET TinoTino is 3 years old and loves playing with his superhero action figures and going to the park. He was diagnosed with a stage IV neuroblastoma last summer. Tino is shy, quiet and caring but he definitely has a wild side with a great sense of humor.

“The events we have attended have been great family time that we most likely would not have been able to attend if it weren’t for HopeKids and the sponsors. The friendships and support from people we have met through HopeKids has helped me a lot.”- Sassy, Tino’s mom.

HopeKid Avery does the limbo at Skatetown;

Comedian Michael Jr. with Bryan Johns, Way FM,

at the private screening of War room; The Watoto

Children’s Choir performs a private concert just

for HopeKids; HopeKids listen during the Nasher

Sculpture Center presentation.

HopeDay program

Copyright © 2016 HopeKids. All Rights Reserved. www.hopekids.org

DoNATe

Page 7: CHILd LIfe SpeCIALISt MontH: KIM fRoeHLe · 3/1/2015  · • Lamar Advertising • Musical Theatre of Anthem • Parada del Sol Rodeo • Pinnacle High School • Phoenix Suns As

Following their siblings’ cancer diagnosis....

of children showed new externalizing behaviors such as acting out at home or school, fighting, drug use, increased sibling rivalry and lower frustration tolerance.9

showed new internalizing behaviors such as worry, anxiety, depression, sleeping or eating problems.9

$54,270Mean per-patient annual direct cost of Duchenne muscular dystrophy. Seven to 16 times higher than the mean per-capita health expenditure in the U.S.8

1. Himelstein, B.P., Hilden, J.M., Boldt, A.M., Weissman, D. (2004) Pediatric Palliative Care. New England Journal of Medicine; 350:1752 DOI: 10.1056/NEJMra030334 | 2. Alderfer, M. A., Labay, L. E., and Kazak, A. E., (2003). Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors? Journal of Pediatric Psychology, vol. 28, no. 4, pp. 281–286. | 3. Muscara, F., McCarthy, M. C., Woolf, C., Hearps, S. C., Burke, K., & Anderson, V. A. (2015). Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting. European Psychiatry, 30(5), 555-561. doi:10.1016/j.eurpsy.2014.12.008 | 4. Woolhandler, S., & Himmelstein, D. U. (2013). Life or Debt: Underinsurance in America. Journal of General Internal Medicine, 28(9), 1122–1124. http://doi.org/10.1007/s11606-013-2460-y | 5. Obayuwana, O., and Carter A.L., Journal of the National Medical Association, March 1982, 74(3): 229–234. | 6. retrieved 20 March 2013 <http://www.med.umich.edu/yourchild/topics/chronic.htm>. | 7. Bally, J. G., Duggleby, W., Holtslander, L., Mpofu, C., Spurr, S., Thomas, R., & Wright, K. (2014). Keeping hope possible: A grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer. Cancer Nursing, 37(5), 363-372. | 8. Landfeldt, E., Lindgren, P., Bell, C. F., Schmitt, C., Guglieri, M., Straub, V., Bushby, K. (2014). The burden of Duchenne muscular dystrophy: An international, cross-sectional study. Neurology, 83(6), 529–536. http://doi.org/10.1212/WNL.0000000000000669 | 9. Breyer, J., Kunin, H., Kalish, L. A., Patenaude, A. F., (1993). The adjustment of siblings of pediatric cancer patients: a sibling and parent perspective, Psycho-Oncology, vol. 2, no. 3, pp. 201–208. | 10. Zafar, S. Y., Peppercorn, J. M., Schrag, D., Taylor, D. H., Goetzinger, A. M., Zhong, X., & Abernethy, A. P. (2013). The Financial Toxicity of Cancer Treatment: A Pilot Study Assessing Out-of-Pocket Expenses and the Insured Cancer Patient’s Experience. The Oncologist, 18(4), 381–390. http://doi.org/10.1634/theoncologist.2012-0279 | 11. Barrera, M., Fleming, C., & Khan, F. (2004). The role of emotional social support in the psychological adjustment of siblings of children with cancer.Child: Care, Health & Development, 30(2), 103-111 9p.

“Adolescent [siblings of children with cancer] who have low social support tended to be perceived as being more anxious and having more behaviour problems than adolescents with high social support.”11

Why HopeKids?

42% of patients report a

significant or catastrophic financial burden of

cancer10

68% cut back on leisure

activities 10

46% reduced spending on food

and clothing10

“Parents feared the complete loss of hope because it would be like giving up on their child and

giving up a future with their child and their family and because that

would leave them mired in dark and negative thoughts.”7

Each yEar in thE UnitEd StatES, approximatEly 500,000 childrEn cope with life-threatening medical conditions1. These conditions affect the entire family with more than half of parents suffering from acute stress disorders2 and 80% of siblings having elevated levels of posttraumatic stress3. In addition, illnesses contribute to over 62% of bankruptcy filings each year4. More than $800 million is spent on medical research annually to find cures for cancer or other diseases but these families need support now. Numerous studies show that hope can increase one’s overall ability to cope5 and that familial support in chronically ill children is vital6. HopeKids understands we are not a cure for these illnesses, but we believe

HOPE is a powerful medicine.

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