7-year-old Faith is battling a malignant brain tumor. She stole our hearts with her precious words, “My favorite present is being home.” Hear Faith’s story from her mom, Tana, during one of Faith’s chemotherapy treatments.
Emma was diagnosed with Philadelphia-chromosome positive acute lymphoblastic leukemia (ALL) when she was 11 years old. But for Emma, losing was not an option. After three years of remission, Emma’s cancer returned and she came to C.S. Mott Children’s Hospital for a bone marrow transplant.
C.S. Mott Children’s Hospital is home to one of the nation’s best children’s cancer programs, according to U.S. News & World Report. U-M’s pediatric bone marrow transplant program is the largest and most experienced in Michigan. From early and accurate diagnosis capabilities, to effective treatment and improving life-long quality of life for cancer survivors, C.S. Mott Children’s Hospital is committed to being the Leaders and Best for children with cancer.
Learn more at http://www.mottchildren.org/cancer.
Meet #BraveKid, Brock Hart and his #BraveMom, Vanessa. Brock is a pediatric cancer survivor and an avid fisherman. TSET is honored to support families like Brock’s through critical pediatric cancer research funding here in Oklahoma.
“To see the collaboration between TSET, the University of Oklahoma Health Sciences Center, the Stephenson Cancer Center and the Children’s Foundation is extremely encouraging to families like mine. I know that funding from these groups will provide crucial support to the important research being done here in Oklahoma. So behalf of Oklahoma’s youngest cancer patients, we say thank you.” – Vanessa Hart.
Sarah is a childhood brain cancer survivor and 2 year BAYADA REGATTA rower. In this video, Sarah shares her passion for photography and love of rowing. The BAYADA Regatta allows Sarah to experience true freedom on the river. We are honored to feature her story here. #ThroughGlass — at BAYADA REGATTA.
In July 2007, at the age of 10 months, Austin was diagnosed with bilateral Wilms tumor, a type of childhood cancer in both kidneys. He was thrust into a world of chemotherapy, hospital stays, and four abdominal surgeries before being declared cancer free eight months later.
But after one year, the cancer was back. More chemo, radiation, and surgeries cost him his entire right kidney and half of his left.
Today, Austin is a relatively healthy, extremely happy and remarkably normal 7-year-old, despite living with stage 3 renal failure as a result of his childhood cancer treatment. He is energy is boundless, he loves gymnastics, and he has recently mastered his back handspring.
Austin is one of five St. Baldrick’s Foundation 2012 Ambassadors.
UPDATE: Jan. 2015 Riley had another recurrence in July 2013. She had another craniotomy where they were able to remove 90-95% of the tumor, she then had a stem cell transplant in Oct. 2013. 6 weeks after the transplant, there was no sign of the residual tumor!! She had scans on Jan 5, 2015 and she still has No Evidence of Disease (NED)!! She is currently attending school and trying to get back to living her life like a “normal” 14 year old!!
UPDATE: July 2012 – Recurrence confirmed…completed 5 sessions of Cyber Knife treatment, waiting for Sept to have next scan to see if it worked! She continues to be positive & an inspiration to everyone that knows her!!
The courage of a child is amazing and regardless of the struggles she faced, how she always kept a smile on her face!! SHE IS MY HERO!! This is a glimpse into my daughter Riley’s battle with cancer. In 2008, when she was 7, she was diagnosed with Medulloblastoma – a malignant brain tumor. We almost lost her in Feb 2009 when she went into septic shock after contracting Pneumonia. She is still facing many obstacles from the effects of her treatment but she is still alive and still CANCER FREE!!!
TRUSSVILLE, Alabama – Parents and players hear the words “play ball” before every little league game. Although routine to some, those words hold a dear place for the Barksdale and Moultrie families in Trussville. Their sons, Trevor Moultrie and Andrew Barksdale are both 7-year-old cancer survivors who played this season at the Trussville Baseball Park. Although they were on different teams, the two share a special bond — on and off the field.
“We have known each other for a long time and we had cancer together,” said Trevor Moultrie when asked to describe his friendship with Andrew Barksdale.
Trevor recalled his first year playing when he was catching behind home plate and Andrew came up to bat.
“I think I said hi Andrew, and then we played in the park after the game,” he said.
Andrew remembered the encounter as well.
“After the game we said, ‘good game’ to each other and played,” he said.
Throughout the year, the pair would go to the ballpark and cheer one another on, during practice and games.
The boys’ mothers, Sherri Moultrie and Holly Barksdale, met after striking up a conversation in a waiting room at Children’s of Alabama. They learned that they lived only a mile away from each other in Trussville, and began what they described as an instant “family-like” relationship.
Their sons were both diagnosed with ALL (acute lymphoblastic leukemia) as toddlers, and Sherri and Holly say they supported one another and depended on one another through countless trips to the clinic and hospital.
“We kept in touch by text and social media,” Sherri Moultrie said. They would often send a word of encouragement or ask a question about what the boys were experiencing during treatment.
“We often understood each other better than our own families as they struggled with good and bad days,” Barksdale said.
Both Andrew and Trevor are healthy today and still share a love of baseball. Thursday, as the mothers watched their boys play catch, they still wince as they fall down or have a ball bounce out of their gloves, but they are keenly aware of the miracle of “small things.”
“They are little miracles,” Barksdale said of the boys.
On Sunday, June 8, 2014, Children’s of Alabama will host a baseball party for childhood cancer survivors. More than 300 are expected to attend the private event that will celebrate with their families.
According to Children’s of Alabama, every year 150 Alabama children are diagnosed with cancer.
“It’s a life-changing diagnosis that is devastating to the family and is the first step of a grueling treatment journey,” said Kathy Bowers with Children’s of Alabama.
Thankfully, thanks to research, development and donations, 80 percent of the children diagnosed with cancer today are expected to survive — that’s up from 50 percent just two decades ago.
Learn about the latest advances in the war against cancer from Stanford researcher Adam de la Zerda, who’s working on some cutting-edge techniques of his own.
Using a remarkable imaging technology that illuminates cancer-seeking gold particles injected into the body, de la Zerda’s lab hopes to light the way for surgeons to remove even the tiniest trace of deadly tumours.
Source: Little Fighters Cancer Trust | Author: LFCT
Newswise — ANN ARBOR, Mich. — Sick kids will get to visit the Big House without leaving their rooms at C.S. Mott Children’s Hospital, thanks to the foundation named after University of Michigan football coach Jim Harbaugh.
They may also hang out with dinosaurs, ride roller coasters or even visit the moon.
These are just some of the types of experiences made possible by the new Harbaugh Fund announced on Michigan’s Giving Blue Day. Created by a $50,000 seed donation from the Harbaugh Foundation, the new fund will support activities led by the hospital’s Child and Family Life team.
First project on the list: Virtual reality viewers for every young patient.
The viewers work by sliding in a smartphone and turning on virtual reality apps through the phone. Kids will be encouraged to try many experiences, including heading to the Big House to see what a typical game day is like.
Through the Michigan VR app created by University of Michigan Athletics last year, young patients can follow the Wolverines through the tunnel and into Michigan Stadium, mingle with the band and cheerleaders and even join the team in the locker room for a pep talk from coach Harbaugh himself.
“The Jim Harbaugh Foundation is thrilled to support the Child and Family Life team at Mott Children’s,” says Sarah Harbaugh, who along with her husband Jim is a co-chair of the Victors for Michigan National Campaign Leadership Council for Mott and Von Voigtlander Hospital.
“We are so inspired by the stories of Little Victors fighting such courageous battles every day. Programs run by the Child Life staff are critical to bringing a sense of normalcy for children and their families.”
The new fund will cover the cost of cardboard viewers for every child and teen admitted at Mott. Patients can choose from a long list of virtual reality apps available through smartphones.
“The possibilities are endless,” Mott certified child life specialist and patient technology coordinator J.J. Bouchard says. “New virtual reality apps are being developed every day that let kids visit faraway places, see extinct animals and even go to space. The viewers are a fantastic new tool that make it easier for kids to have these ‘out of hospital’ experiences.”
The Harbaugh Fund is intended to grow over time and has already inspired nearly $50,000 in additional donations from other donors that will support Child Life activities.
The Child and Family Life team at Mott includes trained professionals who work with doctors, nurses and social workers to reduce anxiety experienced by children facing hospitalization and chronic or life-threatening illnesses. Services include music therapy, activity centers, procedure preparation, sibling programs, art therapy and an in-hospital school program.
“Kids who spend long periods of time in hospital rooms often feel isolated and cut off from friends and social worlds,” says Daniel Fischer, director of the Child and Family Life Department at Mott. “Our Child Life team is constantly looking for fun and engaging opportunities that help connect families to the outside world and offer respite from hospital life.
“We are thankful to the Jim Harbaugh Foundation for supporting programs that help reduce anxiety and stress for children and families and make them feel as comfortable as possible while here.”
The cardboard viewers will be one more way digital technology supports healing at Mott. Over the last year, the hospital has also installed Xboxes in every patient room and offered diverse virtual and augmented reality programs.
Volunteers from Ann Arbor-based GameStart work with the Child Life team to bring cutting-edge Oculus Rift headsets to Mott, letting young patients experience roller coasters, submarines and other virtual worlds. The headsets may be used one at a time.
Physical and occupational therapists have also used augmented reality books created by Ann Arbor-based company Spellbound to help kids in rehab as they re-learn functions like pointing and talking. The Spellbound app is used with smartphone or iPad cameras to make the characters in the books appear to pop off pages and interact with the reader, making rehab more enjoyable and fun for young patients.
“The new technology has really opened our eyes to a whole new way of engaging with and serving our patients,” says Bouchard. “For kids who are stuck in a hospital room or have physical limitations that prevent them from doing some of these activities in real life, virtual world experiences can really enhance their therapy. We can’t wait to see what’s next.”
Michigan’s Giving Blue Day raises money for campus and health system programs on the globally-recognized Giving Tuesday following Black Friday.
Source: Newswise: Latest News | Author: University of Michigan Health System
Societal preferences in the treatment of pediatric medulloblastoma: Balancing risk of death and quality of life #BraveMoms
Amir Khakban, Tima Mohammadi, Larry D. Lynd, Don Mabbott, Eric Bouffet, Louise Gastonguay, Zafar Zafari, David Malkin, Michael Taylor, Carlo A. Marra ⋅ Blog, Honoring Brave Children, Latest Pediatric Cancer News, Parent's Post, Videos ⋅
Medulloblastoma is the most prevalent childhood brain cancer. Children with medulloblastoma typically receive a combination of surgery, radiation, and chemotherapy. The survival rate is high but survivors often have sequelae from radiotherapy of the entire developing brain and spinal cord. Ongoing genetic studies have suggested that decreasing the dose of radiation might be possible among children with favorable molecular variants; however, this may result in an increased disease recurrence. As such, there is a need to investigate the nature of trade-offs that individuals are willing to make regarding the treatment of medulloblastoma.
We used best–worst scaling to estimate the importance of attributes affecting the general public’s decision making around the treatment of medulloblastoma. After conducting focus groups, we selected three relevant attributes: (1) the accuracy of the genetic test; (2) the probability of serious adverse effects of the treatment(s); and (3) the survival rate. Using the paired method, we applied a conditional logit model to estimate preferences.
In total, 3,006 respondents (51.3% female) with an average age of 43 years answered the questionnaires. All coefficients were statistically significantly different from zero and the attribute levels of adverse effects and the survival rate had the most impact on individuals’ stated decision making.
Overall, respondents showed high sensitivity to children experiencing disability particularly in the setting of a good prognosis. However, among children with poor prognostic molecular variants, participants showed tolerance about having a child with mild and partial disability compared to a low rate of survival.