So what does this really mean for the children and families who come through our doors?

• Children treated here benefit from cutting-edge therapies when traditional treatments have been exhausted.
• Children and their families can stay right here in Milwaukee with their trusted doctors and nurses to participate in a clinical study. Previously children and their families would have to relocate to participate in these studies.
• Information gathered by the consortium contributes to the development of new therapies and adds to the understanding of childhood cancer around the world.

A heartfelt thank you to the MACC Fund for their support in developing the infrastructure needed to run these early clinical trials. It’s a great thing when we know we are offering our children the best possible treatment options.

~ Michael Kelly, MD, PhD, Children’s Hospital of Wisconsin
Dr. Kelly is part of the multidisciplinary oncology team at Children’s Hospital of Wisconsin that diagnoses and treats childhood cancers. Founded in 1974, our Oncology Program is an active member of Children’s Oncology Group, an organization dedicated to studying childhood cancers.

Becoming an organ, blood or marrow donor holds the promise of life for thousands of patients with life-threatening conditions and diseases. Children’s Hospital of Wisconsin has seen the impact that organ donation can have for children and families awaiting a transplant. We perform heart, liver and kidney transplants. Many of our children wait months or years for an organ transplant.

The Organ Procurement and Transplant Network shows nearly 2,000 children in the U.S. are waiting for an organ transplant. Approximately 7 percent of children died in 2010 while waiting on the list for an organ transplant. Organs from adult donors often are too large to place into young children. Parents, relatives or friends sometimes can donate a kidney or part of a liver to a child. However, most children are placed on the waiting list for an organ from someone who has died.

The Blood and Marrow Transplant Program at Children’s Hospital is one of the largest in the U.S. using unrelated individuals or mismatched family members as donors. Blood and Marrow Transplants are used successfully to treat a number of cancers, blood diseases and immune disorders that were once considered incurable. Many children who have surgery also rely on life-saving blood donations.

Join the fight to save more lives through organ donation and transplantation. Sign up at YesIWillWisconsin.com. For more information on blood or marrow donation, visit the BloodCenter of Wisconsin.

~ Cinda Werner, MS, RN, director, Trauma and Transplant Services, Children’s Hospital of Wisconsin

Check out my video to see what I did. I did this to give our patients a chance to laugh, have fun and be part of the excitement that comes with having our home team in the playoffs. I did it to raise awareness about the upcoming Miracle Marathon, which impacts the resources I have available as our team at Children’s Hospital provides care for these wonderful children.

www.youtube.com/watch?v=NwEI87JdvJU

What would you do? Would you:

• Listen to 96.5 WKLH May 26-28?
• Pledge your donation at chw.org/miraclemarathon?
• Text 4CHW to 85944 for a small donation?
• Spread the word to your family and friends?

Learn more at chw.org/miraclemarathon.

~ David Margolis, MD, program director, Blood and Marrow Transplant

Sept. 2, 2009, was when our nightmare began. Leo underwent a seven-hour surgery. The surgeon came out after just a few hours to tell us that the frozen section of Leo’s tumor revealed that he had medulloblastoma. This type of brain tumor only affects 500 children per year. Our Leo had gone from a healthy boy starting school to a boy who could no longer turn over in bed due to weakness and lack of coordination caused by the tumor.

We found out within a few days that Leo’s tumor was metastatic, which put him in the high risk category. We were exhausted from getting terrible news each day. Leo was clinging to his life.

Leo now is near the end of his aggressive chemotherapy which requires four day hospitalizations every 28 days. His second and third MRI of his head and spine are negative for new tumor growth and his lumbar puncture is negative of tumor cells. His metastatic tumor in his low back has shrunk to half the size it was when chemotherapy started. Leo now is able to walk with his walker. To our dismay, he uses it to chase his sister around!

The physicians and medical team at Children’s Hospital of Wisconsin have saved my son’s life. Leo’s diagnosis has very grim statistics, but so far he is beating the odds. His neurosurgeons skillfully teased his tumor away from his brain stem, where any slip could have cased instant death. Because his tumor is so aggressive and a cure is not yet found, Leo’s oncology team enrolled him in research protocols. Through it all, they treat Leo as if he was their own son.

This is not just a job for the physicians and the oncology staff here at Children’s Hospital. You and your child are not a number. They know you by name, they know your diagnosis, but most importantly, they take the time to know you. This hospital is a blessing in a time of crisis.

Help support the Miracle Marathon, coming up May 26-28, on WKLH-FM 96.5. You can start now by visiting chw.org/miraclemarathon to share your story or start your own Miracle Marathon campaign here.

-Jen Montemurro, Leo’s mom

The segment chronicles the young girl’s lifelong struggles with chronic infections, high fevers, facial pain and swelling, and her visits to a number of physicians. Claire ultimately was diagnosed by a Children’s Hospital medical team that included Beth Drolet, MD, medical director of Dermatology and the Birthmarks and Vascular Anomalies Center; and Michael E. Kelly, MD, PhD, program director of Cancer and Blood Disorders. Drs. Drolet and Kelly also are faculty of the Medical College of Wisconsin.

What you might find of interest is that physicians from seemingly vastly different specialties (Dermatology and Cancer), working with pathologists and a team of additional experts, shared their knowledge about disease behavior and truly collaborated to make the diagnosis. That’s what often is so fascinating and rewarding about how medicine works.  It is clear that these collaborations more and more often are leading to research and discoveries, both in the lab and at the bedside, that are making a difference for kids.

We are glad to have been able to find a diagnosis for Claire, and perhaps through sharing her story we will be able to connect with more kids like her.

–Mike Gutzeit, MD, chief medical officer, Children’s Hospital of Wisconsin

Nurse Amy Schroeder, Executive Director Bill Owens and Nurse Julie Waldhart

Once a month, we hold a photo shoot at Children’s Hospital of Wisconsin through the Flashes of Hope program. We turn one of the hospital classrooms into our own little studio – complete with a backdrop, special lighting and props (we have found that bubbles are a must). At each shoot there is a volunteer professional photographer, two volunteers and a make-up artist to help the girls and moms (occasionally a boy or dad) get ready for the camera. The mood is light and playful with lots of joking, smiling, laughter and perhaps a few tears here and there. We work hard to lift the patients out of their illnesses for at least a little while by giving them an opportunity to have fun in front of the camera and to just be kids. This all is free of charge for the families.

For some families, these pictures are the first opportunity for family portraits. For others, unfortunately, the photos may be their last. Flashes of Hope captures the beauty and innocence of each patient and family; creating memories they can hold onto forever. Flashes of Hope offers them a look back at the smiles and laughter their son or daughter still had while battling cancer, giving them hope for whatever tomorrow may bring.

Whether there is a teenager hugging you and thanking you for taking his picture with his sisters, or a father expressing his gratitude for the portraits that were taken of his son two weeks before he lost his courageous eight-year battle to cancer, we know that Flashes of Hope touches the hearts and lives of all who participate.

For more information on the Flashes of Hope national program please visit www.flashesofhope.org or flashesofhopemilwaukee.blogspot.com to see our beautiful Children’s Hospital patients. They inspire us each and every day.

— Julie Waldhart, RN, Hematology, Oncology and Transplant

• Shorewood High School’s “Shorewood Games,” held nearly every four years since 1988 when they were inspired to help a student with cancer named Gus. Special events galore, “Buzz Cuts” for boys and girls and fun between students and faculty helped raise more than $30,000 for the MACC Fund’s fight against childhood cancer and blood disorders. Kids helping kids.\

• The Lake Country Charity Invitational golf event sponsored by Hartland Arrowhead High School includes many of Wisconsin’s finest high school golfers. Brandon, who graduated from high school in 2008 after battling cancer for six years, inspired the team before they teed off through a very emotional letter. He encouraged them to never take anything for granted and to be grateful for their health and for the chance to compete.

His letter hit home, and so did the message of 5-year-old Emilie, who has been fighting cancer for a year. She joined her grateful family to thank the golfers. She gave a smile from atop her dad’s broad shoulders that brightened the darkening skies. The tears in a few of the eyes in the crowd were a harbinger of the rains that would soon wash out the tourney. The golfers were proud to raise $30,000 for the MACC Fund and kids like Brandon and Emilie. Kids helping kids.

As executive director of the MACC Fund, I am lucky to witness this awesome phenomenon quite often. It’s why we raise money for pediatric cancer and blood disorder research. It’s why we support this research as much as we can, including at the MACC Fund Center for Cancer and Blood Disorders at Children’s Hospital.

As adults, we can follow the lead from these generous young people by investing in research to find a cure for pediatric cancer and blood disorders. There are many opportunities for you to make a difference in the life of a child battling these diseases.

See what we’re doing at the MACC Fund and the MACC Fund Center for Cancer and Blood Disorders at Children’s Hospital of Wisconsin.

–John Cary, executive director, MACC Fund

Honorary co-captain Peggy Troy, MSN, RN, president and CEO of Children’s Hospital and Health System, and I invite you to support this event by registering as a rider or volunteering at the Children’s Hospital-sponsored rest stop.

All the money raised here in Wisconsin goes to Wisconsin researchers to help Wisconsin kids. This event, one of the largest fundraising events for childhood cancer and blood disorders in the U.S., has raised more than $8 million for the MACC Fund.

The MACC Fund has made a difference in the care of our hematology-oncology-transplant patients since 1976. Its $33 million investment in the fight against childhood cancer and blood disorders is one of the reasons our program is among the best in the nation. Patients and families in our neighborhoods and around the world benefit form discoveries here, making our center one of the top 10 in the nation.

When Jon McGlocklin and Eddie Doucette launched the MACC Fund nearly 30 years ago, only 20 percent of patients diagnosed with childhood cancer survived. Most didn’t have a chance for long-term survival. Through research, the survival rate for childhood cancer now is nearly 80 percent.

I am honored to work with both Children’s Hospital and the MACC Fund. We hope to see many of our colleagues and supporters June 6 in Waterloo, Wis., and along the scenic routes of south-central Wisconsin. Join the Children’s Hospital of WI-MACC Fund Center for Cancer and Blood Disorders team by May 23.

On behalf of co-captains Cheryl Hillery, MD; Michael Kelly, MD, PhD; Dave Margolis, MD; and Paul Scott, MD; our exceptional team and the inspiring patients and families we serve, thanks for your support!

–Debra Weiner, director, MACC Fund Center for Cancer and Blood Disorders at Children’s Hospital

I first heard about the Beads of Courage program a short while after I began as the interim patient care manager on the Hematology, Oncology and Transplant Unit (LINK). Not only did the staff express a strong interest in the program, but there was one particular father of a patient who advocated heavily for the inception of the program. He said to me, “I know that someday we may not continue to win the battle against cancer, but we always will have these beads to tell his story.” He continued to tell me how during the holidays, as various family members hosted holiday gatherings, they each displayed the beads in some way; on the Christmas tree, fireplace mantle or among the buffet.

My support for the program was confirmed when one of our nurses forwarded an e-mail message from a former patient. His mother told the story of how in his last days when he was barely interacting, two of his nurses brought out his beads. He nodded with them as they spoke of how the beads were symbolic and told the story he was no longer able to tell.

The beads are distributed both on the inpatient unit and the outpatient MACC Fund Center for Cancer and Blood Disorders, allowing patients to participate whether they are here for a short visit or an extended stay.
The beads are a tangible way for each child to express his or her very individual journey as he or she takes one day at a time in the fight against a life-threatening disease. With the giving of each bead there is therapeutic dialogue about the symbolism of the bead, how the patient is feeling about his or her current therapy and recognition for all the beads the child has collected to the unique story of his or her personal journey of strength and bravery.

The program has brought energy and excitement to patients and their families. I am grateful for the support of colleagues and the opportunity to bring this program to Children’s Hospital. I personally have been blessed in my nursing career. There are so many days when I leave work knowing in my heart that I am right where I am supposed to be. I look forward to reporting on the progress of the program, the monumental moments and heartwarming stories in the months and years to come.

It is true: There is great reward in the opportunity to do more.

WISN-TV Ch. 12 (ABC) aired a nice piece about the Beads of Courage Program 10 p.m. Sunday, April 26.

Lisa Krueger, RN, MBA, patient care manager in the Hematology, Oncology and Transplant (HOT) Unit