(CNN)Childhood cancer is draining, frightening and painful. A mother in Texas shared an unfiltered peek into how the disease impacted her family.

Kaitlin Burge posted stirring photos of her 4-year-old son, Beckett, leaning over a toilet, with his 5-year-old sister, Aubrey, standing guard. Beckett was diagnosed with acute lymphoblastic leukemia over a year ago.

"Vomiting between play sessions. Waking up to throw up. Standing by her brother's side and rubbing his back while he gets sick," she wrote. "This is childhood cancer. Take it or leave it."

Burge said she took the photos in January, but they depict a "typical day in the life" for her son. Beckett takes a chemotherapy pill every night in addition to monthly trips to a clinic where he receives chemo through a port, and with chemo comes nausea. Her children make sacrifices for their brother.

The photos, she said, show the reality of childhood cancer and its implications across families. "Our family's been split up," she said of sending her children to stay with their grandmother or her brother while Beckett's in the hospital. "We're all tired. Your relationships are tried. You lose a lot of friends. You don't get to go out and live the life you've been living prior to this."

And focusing on Beckett's health has meant she has less time to devote to Aubrey and her 23-month-old daughter.  "The siblings are forgotten about a lot of the time. They make a lot of sacrifices that people don't realize," she said.  Aubrey has stayed by his side in the hospital and at home. At first, she didn't understand why her formerly playful younger brother slept all the time, couldn't walk on his own or got to skip school, Burge wrote.

"She was so used to being the big sister," she told CNN. "Her world flipped."  Families have embraced her message.  Beckett should complete treatment in August 2021 after more than three years. It feels like an eternity for her family, Burge said.  The process has grown increasingly costly, so a friend made a GoFundMe for Beckett's medical expenses.  When Beckett was diagnosed, she felt like she was alone. But parents of children with cancer have embraced her post, revealed the community she didn't always know was there, she said. "Finding positive, I think, in the ugly, is a good outlook on life."

One thing they don’t tell you about childhood cancer is that it affects the entire family. You always hear about the financial and medical struggles, but how often do you hear about the struggles families with other children face? To some, this may be hard to see and read. My two kids, 15 months apart, went from playing in school and at home together to sitting in a cold hospital room together. My then 4 year-year-old watched her brother go from an ambulance to the ICU. She watched a dozen doctors throw a mask over his face, poke and prod him with needles, pump a dozen medications through his body, all while he laid there helplessly. She wasn’t sure what was happening. All she knew was that something was wrong with her brother, her best friend.
A little over a month after he was released from the hospital, she watched him struggle to walk and struggle to play. The lively, energetic, and outgoing little brother she once knew was now a quiet, sick, and very sleepy little boy. He never wanted to play. She didn’t understand how he was able to walk before this, but now he can’t even stand unassisted. She didn’t understand the different therapies he had to attend to gain his strength back. To her, it was something special he got to do that she didn’t. Why couldn’t they go to their favorite trampoline park anymore? Why couldn’t they go to the splash pads they previously went to? Why didn’t he have to go back to school, but she did?
Why did we take his sister with us and why did she see all of this at a young age? Children need support and togetherness, and should not be kept at a distance from the person who is ill. The most important thing is to show that they are taken care of regardless of the situation. She spent a fair amount of time, by his side in the bathroom, while he got sick. She stuck by him. She supported him and she took care of him, regardless of the situation. To this day, they are closer. She always takes care of him.
Vomiting between play sessions. Waking up to throw up. Standing by her brothers side and rubbing his back while he gets sick. Going from 30 lbs to 20 lbs. This is childhood cancer. Take it or leave it. 🎗

San Antonio resident Brittany Galan was diagnosed with leukemia when she was 6 weeks old. She underwent chemotherapy for two years and has had several health problems as a result of the treatment. (Tamir Kalifa for The Washington Post)
The rate of second malignancies in survivors of childhood cancer is declining — an improvement linked to reduced radiation treatment of the first disease, according to a new study.
The research, published Tuesday in the Journal of the American Medical Association, focused on new cancers — not recurrences — that occurred within 15 years of the original ones. The rate for such cancers fell from 2.1 percent for survivors diagnosed in the 1970s to 1.3 percent for those diagnosed in the 1990s.
For the same period, the percentage of pediatric cancer patients treated with radiation therapy fell from 77 percent to 33 percent, and the doses were ratcheted back.
The study was the latest to suggest that efforts to modify potentially toxic cancer treatments — including radiation and chemotherapy — are paying off in reduced “late effects.” These are serious and sometimes life-threatening complications, such as second cancers, heart problems and infertility, that can affect cancer survivors years later.
The research was based on data from the National Cancer Institute-sponsored Childhood Cancer Survivor Study, which tracks more than 30,000 survivors. The new analysis included more than 23,000 people treated over three decades.
Oncologists and researchers had long assumed that reducing radiation would benefit pediatric cancer survivors, said Gregory Armstrong, an oncologist at St. Jude’s Children’s Research Hospital in Memphis and the principal investigator of the CCSS. But the new paper demonstrates the link, said Armstrong, one of the authors of the study.
“We reduced radiation therapy and that reduced the risk,” he said.
Even so, childhood cancer survivors remain at risk for later malignancies. Survivors from the 1990s are four times as likely to be diagnosed with another cancer than their peers who were never sick with cancer. Those treated in the 1970s are six times as likely to develop another cancer. The most common second malignancies are breast and thyroid cancers.

Pediatric cancer rates are highest in the northeastern United States, according to a new report from the Centers for Disease Control and Prevention. In Connecticut, 2,060 cases of pediatric cancer were recorded between 2003 and 2014 and the rate was close to 186 per one million, which was among the higher rates in the country. The incidence rate was higher among white children and teens compared to black children and teens in the state, which matched the national trend.
Previous studies by the CDC focused on regional differences. The most recent study, released this week, provides state-by-state statistics.
Rates were highest in New Hampshire, DC and New Jersey and lowest in South Carolina and Mississippi.
"Knowledge of pediatric cancer incidence variation by state and cancer type can prompt local and state cancer registries to evaluate reporting and diagnostic standards," the study said. "Understanding geographic variation in incidence rates can help cancer-control planners and clinicians address obstacles in access to care, which is especially relevant to states with large distances to pediatric oncology centers."
The CDC analyzed data from the United States Cancer Statistics and identified over 170,000 cases of pediatric cancer between 2003 and 2014. According to the report, leukemias had the highest incident rates, followed by brain tumors and lymphomas. Identifying the incident rates of pediatric cancer by geographic region can enhance provider awareness, treatment capacity, survivor care and surveillance, the CDC says.
Overall, there were about 174 cases per one million children and teens and the rate was higher in males compared to females. When broken down by age group, the rates were higher in children between the ages of 0-4 and teens between the ages of 15-19, as compared to kids between the ages of 5-9 and 10-14.
After the Northeast, rates were highest in the Midwest, the West and lowest in the South. The CDC says geographical variation in pediatric cancer might be influenced by the following factors:

• Difference in exposure to carcinogenic chemicals or radiation
• Genetic variation in certain populations
• Rates for certain cancers may vary by race and ethnicity
• Incidences of some types of cancer might be related to enhanced detection and access to care, which can vary based on location
• The geographic variation might be affected by age, economic status and rural/urban classification

The CDC says cancer incidence rate by geographical region can help local and state cancer registries to evaluate reporting and diagnostic standards. Understanding this information can also help clinicians address obstacles to care, which is especially relevant to states with large distances to pediatric oncology centers.

www.mychamplainvalley.com/news/uvm-research-on-leukemia-could-change-treatment-options-for-high-risk-patients/706919423​

​Burlington, Vt. - Research on Leukemia at the University of Vermont could change treatment options for patients.
Dr. Jessica Heath says the hardest part of her job is telling a parent their child has cancer.
"You know that that whole family's life is going to change like that," she said.
Health works at the Children's Specialty Clinic at the University of Vermont Medical Center in pediatric oncology.  She says the clinic sees about 30 new cases of childhood cancer each year.

"Their life story becomes what happened before cancer and what happened after cancer," she said.
Dr. Heath has some patients with Leukemia, a blood cancer. Chemotherapy treatment for these children could take months, depending on the patient.

Research being done just a few buildings away could soon help kids who are fighting Leukemia.
Heath is working with UVM professor Seth Frietze on research to identify different types of proteins in Acute Lymophoblastic Leukemia, also known as ALL. It's a higher risk form of the disease. They're partnering up with researchers from the University of Minnesota to do the work.

"Even something like Leukemia, there's many different types and even every patient is different from on to the next," Frietze, an Assistant Professor at the University of Vermont, said.
Frietze considers himself a 'gene jock,' looking deep into the cancer cell's DNA.

"You look at them under a microscope and they look the same," Frietze said.
Frietze helped to find one key protein, the 'needle in the hay stack,' as he put it. The protein, STAT5, causes competition between other proteins, driving the cancer.

"If we have a lot of that one protein and none of this other protein, it leads to a bad prognosis and a bad outcome," Frietze said.
The key difference in the DNA's protein sequence.

"Those differences are very relevant for our treatment options," he said.
In the future, this means doctors, like Jessica Health, will be able to create more specific treatment plans for high risk Leukemia patients, cutting down on long term or permanent side effects.
"We know that 50 to 60 percent of children who are treated for Leukemia will suffer long term or even permanent side effects from their treatment," Heath said. "These include things like developmental delay, toxicity to the heart, to the kidney."
Researchers are still a long way from this study making its way to clinics.

"Ultimately this research will lead to something that will impact patients," Freitze said.
"Children are so resilient and so tough, which you might not imagine looking at this tiny little two or three year old," Heath said.
The research is a ray of hope for the littlest ones putting up a big fight.

San Antonio resident Brittany Galan was diagnosed with leukemia when she was 6 weeks old. She underwent chemotherapy for two years and has had several health problems as a result of the treatment. (Tamir Kalifa for The Washington Post)
The rate of second malignancies in survivors of childhood cancer is declining — an improvement linked to reduced radiation treatment of the first disease, according to a new study.
The research, published Tuesday in the Journal of the American Medical Association, focused on new cancers — not recurrences — that occurred within 15 years of the original ones. The rate for such cancers fell from 2.1 percent for survivors diagnosed in the 1970s to 1.3 percent for those diagnosed in the 1990s.
For the same period, the percentage of pediatric cancer patients treated with radiation therapy fell from 77 percent to 33 percent, and the doses were ratcheted back.
The study was the latest to suggest that efforts to modify potentially toxic cancer treatments — including radiation and chemotherapy — are paying off in reduced “late effects.” These are serious and sometimes life-threatening complications, such as second cancers, heart problems and infertility, that can affect cancer survivors years later.
The research was based on data from the National Cancer Institute-sponsored Childhood Cancer Survivor Study, which tracks more than 30,000 survivors. The new analysis included more than 23,000 people treated over three decades.
Oncologists and researchers had long assumed that reducing radiation would benefit pediatric cancer survivors, said Gregory Armstrong, an oncologist at St. Jude’s Children’s Research Hospital in Memphis and the principal investigator of the CCSS. But the new paper demonstrates the link, said Armstrong, one of the authors of the study.
“We reduced radiation therapy and that reduced the risk,” he said.
Even so, childhood cancer survivors remain at risk for later malignancies. Survivors from the 1990s are four times as likely to be diagnosed with another cancer than their peers who were never sick with cancer. Those treated in the 1970s are six times as likely to develop another cancer. The most common second malignancies are breast and thyroid cancers.

Courtesy of The Washington Post 

http://www.internationalchildhoodcancerday.org/About.html for more information!

What is International Childhood Cancer Day?
International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and the society as a whole. It also spotlights the need for more equitable and better access to treatment and care for all children with cancer, everywhere.

Who is behind International Childhood Cancer Day?
This annual event was created by Childhood Cancer International (CCI), a global network of 183 grassroots and national networks of parent organizations in 93 countries, spanning 5 continents. CCI is the largest childhood cancer patient support and advocy network.
International Childhood Cancer Day is based on Childhood Cancer International’s (CCI) core belief that every child with cancer deserves the best possible medical and psychosocial care, regardless of country of origin, race, financial status or social class. It is also anchored on the premise that childhood cancer deaths are avoidable, with timely and accurate diagnosis , availability and access to proper treatment and care as well as affordable, good quality essential medicines.
ICCD was first launched in 2002. Since then, the annual ICCD has generated the support of global networks and leading institutions including: SIOP (International Society of Pediatric Oncology, with 1500 plus members), SIOP Europe (European Society of Pediatric Oncologists), UICC (Union for International Cancer Control with 770 member organizations in 155 countries), St. Jude Children’s Research Hospital, and IARC (International Agency for Research on Cancer), among others. This year the coalition has further expanded to include international child focused organizations such as ICPCN (International Childrens Palliative Care Network ) and CLAN (Caring and Living Among Neighbours).

Why it is important for you/your organization to show support and solidarity for International Childhood Cancer Day?
Children and adolescents are the heart of every community and nation. It is our responsibility to ensure that they are able to live life to the fullest and to reach their full potentials.
Sadly, childhood cancer robs our kids of their childhood and youth. It threatens and puts at risk their very survival. A cancer diagnosis shatters every sense of “normal life” for children, adolescents and their families. But even more heart wrenching than the effects of cancer on the families, siblings and parents, are the effects of cancer on the children and adolescents themselves. At the age of supposed innocence, enjoyment and pure joy, kids with cancer are faced with difficult and demanding situations, isolating them for long periods of time, from peers and friends. Most often, the cancer journey is marked by tremendous pain and stress. Thus, we believe that no child or family should go through the cancer journey alone.
Today, we encourage you to STAND UP and SPEAK OUT for kids with cancer, the survivors and their families. Our challenge is to ACT NOW, because we all know that for children and adolescents with cancer, today is sometimes all that they have!
​
Alone, we can make a difference. Together, we will create change. Together, we can help make life better for children and adolescents with cancer, the survivors and their families.

courtesy of Register-Herald.com, by Wendy Holdren 2/7/2017

In an effort to help thousands of children who undergo cancer treatment each year, U.S. Sens. Shelley Moore Capito, R-W.Va., and Jack Reed, D-R.I., last week introduced the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017.   The bipartisan legislation aims to advance pediatric cancer research and child-focused cancer treatments, while improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer.  Capito and Reed were joined in introducing the bill by Sens. Chris Van Hollen, D-Md., and Johnny Isakson, R-Ga.

“We must continue making advancements that can help save the lives of those battling childhood cancers. The Childhood Cancer STAR Act will contribute to new developments in research and treatment, and has the potential to positively impact tens of thousands of lives. I’m proud to reintroduce this very important legislation for patients and families in West Virginia and across the country,” Capito said.

 Childhood cancer research has progressed in recent years, but cancer is still the leading cause of death by disease past infancy among children in the U.S., according to NIH’s National Cancer Institute (NCI). NCI estimates 10,380 children and adolescents up to 14 years of age nationwide were diagnosed with cancer within the last year and 1,250 will die of the disease.  U.S. Reps. Michael McCaul, R-Texas; Jackie Speier, D-Calif.; Mike Kelly, R-Pa.; and G.K. Butterfield, D-N.C., introduced the legislation in the U.S. House of Representatives.


A summary of the bill follows: 

- Expanding Opportunities for Childhood Cancer Research: Due to the relatively small population of children with cancer and the geographic distance between these children, researching childhood cancer can be challenging. As such, the Childhood Cancer STAR Act would authorize the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents and young adults with cancer.

- Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill would authorize grants to state cancer registries to identify and track incidences of child, adolescent and young adult cancer. This funding would be used to identify and train reporters of childhood cancer cases, secure infrastructure to ensure early reporting and capture of child cancer incidences, and support the collection of cases into a national childhood cancer registry.

- Improving Quality of Life for Childhood Cancer Survivors: Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation would enhance research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for childhood cancer survivors; improve collaboration among providers so that doctors are better able to care for this population as they age; and establish a new pilot program to begin to explore innovative models of care for childhood cancer survivors.
​
-Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer. 

• William F. Bradley, Jr., left, acknowledges thanks from Children's Mercy Hospital and the University of Kansas Cancer Center for the gift that he and his wife, Robbie Harding, pledged toward genomic research.
  MIKE SHERRY / KCPT'S FLATLAND

​
With the infusion of $10 million in philanthropic support, two of the region’s largest medical centers have established four high-level research positions aimed at making Kansas City an international hub in the fight against pediatric cancers.
Children’s Mercy Hospital and The University of Kansas Cancer Center announced the new endowed chairs Monday evening at the Stowers Institute for Medical Research.
“There are very few causes in our community that touch people’s hearts like children and cancer,” said Dr. Roy Jensen, director of the cancer center.
Each position has an individual focus: immunotherapy, health outcomes, genomics and hematologic malignancies.
Establishment of the endowed chairs came through donations from area foundations and individuals, including the Hall Family Foundation. The Hall money is part of a previously announced $8 million gift the foundation made to cancer center last year.
The funding will go toward luring top-notch pediatric research scientists to the two institutions, outfitting lab space and offering other facilities and staff arrangements.
Recruitment is expected to begin immediately, with no definite timetable on filling the positions. The endowed chairs are a “bold step in creating a better future for children with cancer and ultimately a future where cancer doesn’t exist,” said Dr. Michael Artman, chairman of Children’s Mercy pediatrics department.
Monday’s announcement came about two weeks before a review team from the National Cancer Institute is scheduled to visit the cancer center, which is seeking NCI certification as a “comprehensive” cancer cancer. The center submitted its application in September and NCI is expected to make a decision this summer.
If the application is approved, KU would become the nation’s 48th comprehensive cancer center.
“You can’t be a comprehensive cancer center if you are ignoring pediatric patients,” Jensen said.
William F. Bradley Jr., and his wife, Robbie Harding, helped underwrite the chair in genomic research. The Overland Park, Kansas, couple’s daughter, Lauren, has undergone treatment there for leukemia.
“Our experience with Lauren,” Bradley said, “has taught us that no child deserves the condition that brings them to Children’s Mercy.”
Mike Sherry is online news editor at KCPT’s Flatland. Email him at [email protected] or follow him on Twitter @MikeSherryKCPT.

Courtesy of news-medical.net and www.connecticutchildrens.org

Quality of life of patients doing yoga improved, according to the conclusions of “Results of a Pilot Yoga Intervention to Improve Pediatric Cancer Patients’ Quality of Life and Physical Activity and Parents' Well-being”.
This study, published in the January 2017 issue of “Rehabilitation Oncology”, concluded: “Our findings support the notion that yoga for pediatric cancer patients during active treatment is feasible and potentially helpful in improving both patients' and parents' well-being.” It was undertaken by Dr. Andrea D. Orsey and her researcher-colleagues from Connecticut Children's Medical Center, University of Connecticut Hartford School of Medicine, University of Connecticut Storrs, Denmark's LEGO Foundation and Connecticut's Center for Public Health and Health Policy.
The yoga sessions in the study were reportedly designed to teach yoga as a form of integrative therapy for pain management, fatigue, stress, anxiety, and overall helpfulness to improve the quality of life. These included breathing, yoga asanas, relaxation, meditation and savasana.
The authors wrote: We found preliminary evidence that participating in yoga was associated with increased social and emotional health-related quality of life. Yoga is desired by many patients and their parents, and it appears that it may be helpful. Our study contributes to the growing body of literature suggesting the helpfulness of yoga in the context of pediatric cancer patients.
Meanwhile, Hindu statesman Rajan Zed, in a statement in Nevada today, called this study, undertaken by Connecticut and Denmark researchers looking into the possible usage of yoga for pediatric cancer patients, “a step in the positive direction”. Zed urged all major world schools of medicine to explore various benefits yoga offered.
Yoga, referred as “a living fossil”, was a mental and physical discipline, for everybody to share and benefit from, whose traces went back to around 2,000 BCE to Indus Valley civilization, Zed, who is President of Universal Society of Hinduism, noted.

Rajan Zed further said that yoga, although introduced and nourished by Hinduism, was a world heritage and liberation powerhouse to be utilized by all. According to Patanjali who codified it in Yoga Sutra, yoga was a methodical effort to attain perfection, through the control of the different elements of human nature, physical and psychical.
According to US National Institutes of Health, yoga may help one to feel more relaxed, be more flexible, improve posture, breathe deeply, and get rid of stress. According to a “2016 Yoga in America Study”, about 37 million Americans (which included many celebrities) now practice yoga; and yoga is strongly correlated with having a positive self image.  Yoga was the repository of something basic in the human soul and psyche, Zed added.
Writing about the purpose of this study, authors wrote: Yoga is increasingly proving beneficial in improving distress, pain, physical activity, and health-related quality of life in adult patients with cancer. We aimed to study the feasibility and preliminary efficacy of a yoga intervention for pediatric cancer patients in active treatment and for their families.
Authors also wrote: According to the American Cancer Society, approximately 10,380 children living in the United States younger than 15 years receive a diagnosis of cancer annually. Yoga may be especially helpful for cancer patients, given that it can be practiced anywhere and is easily modifiable to physical limitations by accommodating yoga in a hospital bed, chair, or wheelchair. The growing body of literature suggests that yoga may be helpful for pediatric cancer patients in active treatment.