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Rise to Action, a conference series that aims to help young adult survivors of childhood cancer explore topics relevant to their long-term health care and survivorship, is coming to New York City on October 6 - 7. The conference series is hosted by the Children's Cause for Cancer Advocacy (CCCA).
The Rise to Action conference will be held at the Harvard Club is is free for young adult survivors, age 18-25, and their families. The conference will feature sessions on issues such as health insurance, fertility concerns, employment challenges and education transitions, in addition to other topics.
For more information and to register see the Children's Cause website or email RTA-NY@childrenscause.org.
How are children surviving cancer today? Better than ever before. Some childhood cancer patients, now in their young adult years, are expecting to reach milestones in their lives others before them never would have reached.
Today, 1 in 1,000 young adults in the United States is a childhood cancer survivor. In the 1970s, the chance a child would outlive leukemia or lymphoma was 25 percent. Today, it's 80 percent. That's better than most adult recovery rates.
As recovery rates rise, a new frontier is on the horizon -- follow-up for these young people as they age. You see, the very treatments that saved these individuals may cause them complications later in life. It's not yet clear what happens when kids live 20 to 30 years beyond diagnosis. But teams at St. Jude Children's Research Hospital in Memphis, Tennessee, plan to find out as they launch one of the most ambitious follow-up programs to date. Contacting 5,000 patients who have survived for more than 10 years, doctors hope they will recruit a group to receive free check-ups for life. They'll also receive blood tests, MRI scans, even fertility counseling. Their medical histories will serve as rich textbooks for medical professionals and future patients -- so the war on childhood cancer can continue.
September is Childhood Cancer Awareness Month and this year, the Candlelighters Childhood Cancer Foundation is focusing on raising awareness of the specific health issues of adult survivors of childhood cancers. According to the Candlelighters Childhood Cancer Foundation, as recently as thirty years ago, few children with cancer survived, but now almost 75% can look forward to being cured.
However, treatments can come at a high price. While there are, of course, immediate effects, there are also late effects including learning disabilities, second cancers and post traumatic stress disorders in the survivors and their parents. According to Candlelighters, many survivors of childhood cancer do not get the proper follow-up care from physicians familiar with the late effects of childhood cancer.
According to a group of experts and a recent review in The Lancet, more research is needed into pediatric palliative care.
The review looked at various challenges facing pediatric palliative care. The first was defining pediatric palliative care along working towards a better understanding of the needs of children receiving such care. Understanding the culture of the patient is a critical part of improving pediatric palliative care according to the review. For example, being honest about an impending death may go against culturally-prescribed roles of parents as protectors in some cultures.
The review also addressed health care provider burnout and lack of smooth integration of pediatric palliative care knowledge into training programs in medicine and nursing.
Such ALL survivors are less physically active than the general population, according to the researchers. Also, survivors of ALL who received cranial radiotherapy, or "whole brain radiation", report the lowest activity among all adults, suggesting that this therapy, when administered in childhood, may affect an individual's activity in the future.
The reseachers note that the survivors are not lazy, but that the "whole brain radiation" treatment alters something in the central nervous system, leading to a decrease in the level of physical activity.
Because of the risk associated with cranial radiotherapy and improved chemotherapy drugs, cranial radiotherapy is now only used to treat children with very aggressive forms of ALL.
The boy, Anael L'Esperance-Nascimento, was diagnosed with cancer in late 2007 and underwent an operation. After an initial chemo treatment, his parents have decided to treat him with an alternative treatment based on diet, including a focus on raw vegetables.
The province did not intervene according to officials because the boy's illness is not currently life threatening. Healthcare providers at the hospital, Children's Hospital of Eastern Ontario, say that chemotherapy is the boy's best chance to prevent the cancer from spreading, but that they will not pressure government authorities to force the boy to receive the chemo.
What do you think? If chemotherapy is the best treatment according to doctors, should the parents be forced to allow their son to undergo such treatment?
Unnur Valdimarsdottir and team, from the Karokinska Institute, Stockholm, Sweden, recently published a study in Lancet Oncology reporting on how the length of the time parents were aware of a child's impending death affected their future mental health risk.
The team gave about 450 parents who had lost a child to cancer a questionaire, which included questions on how long before their children's death they became emotionally and intellectually aware of the impending death.
One quarter of the parents said that their intellectual awareness of their child's impending death came less than 24 hours before the death. 45 percent said that emotional awareness came also came less than 24 hours before the death.
The risk of future mental health issues was increased if the intellectual awareness time was very short. Such mental health issues include depression, missing work and taking drugs for psychological problems in the future.
The authors advise that healthcare providers should work to provide information and encourage discussion about a child's impending death from cancer, well in advance of the death.
Researchers at the Medical University of South Carolina performed a meta-analysis on 17 papers covering 136 nuclear sites around the world, including the UK, Canada, France, the USA, Germany, Japan and Spain.
They found that death rates for children up to the age of nine were elevated by between five and 24 percent, dependent on their distance to the nuclear facility. For children and young people up to the age of 25, the increase was from two to 18 percent.
However, the researchers note that there weren't excess rates very close to the facilities according to the dose-response studies that they analyzed.
A recently-published study has found that a significant proportion of children under the age of three with the brain tumor ependymoma can skip or delay radiotherapy by using chemotherapy without lowering their chances of survival.
This research has taken 12 years to complete and were released in Lancet Oncology in July 2007 by the Children's Cancer and Leukaemia Group at The University of Nottingham in the UK
Radiotherapy can be harmful to a young child's brain, affecting IQ, short term memory, growth and puberty.
According to experts, the survival rate for children with ependymoma is increasing, but still unacceptably low.
Chemotherapy is harsh, which is good when it comes to killing cancer. What's not-so-good is that it can also cause hair loss, inflict nausea, and disable the proper functioning of all sorts of organs -- including the ovaries. Chemotherapy, therefore, can affect female fertility.
In some cases, doctors have extracted immature eggs from adult women about to receive chemotherapy, matured them in a laboratory, and then implanted them when the women are ready to have children. Until now, no one had ever tried this with eggs from young girls -- girls who have not yet undergone puberty. But it's just recently happened.
Doctors have removed eggs from young female cancer patients and for the first time, have brought the eggs to maturity before freezing them.
In tests involving mice performed at the University College London's Institute of Child Health, results a promising when genetically modified skin cells are pitted against neuroblastoma. Although rare, the condition is potentially fatal and accounts for 10% of childhood cancer.
When researching children's hospitals and oncology programs, you should have a list of questions that are relevant to the child's cancer. The same questions should be asked at each hospital so you can compare answers and make an informed decision about where to seek treatment.
Some questions include:
What clinical trials are available?
What type of research is going on for this type of cancer?
What are the success rates?
How many of these type of cancer cases do you see each year?
Have you treated a child with this type of cancer?
What cancers do you specialize in?
Do you offer support groups?
Do you allow family-centered care which allows families to be part of the treatment plan?
Pediatric cancer care is much different than cancer treatments in adults, many parents decide to go to a children's hospital like St. Jude's for care. Whatever the choice, make sure that you are getting the best possible care for the child as you can. Since you are their voice and their advocate, you have to do what you can to make sure that you are giving them the best opportunity to fight and beat childhood cancer.
The two little girls who recently fashioned their own cardboard lemonade stand and sold their homemade refreshments for 50 cents a cup are not your typical lemonade entrepreneurs. What makes them stand out from the usual crowd of lemonade peddlers? These girls -- Emily is four and Lily is six -- are both cancer patients, undergoing chemotherapy for acute lymphoblastic leukemia and raising money for cancer research.
The two met last year at the Omaha Children's Hospital cancer clinic. Their mothers became fast friends, worked together on a neighborhood garage sale, and invited the little girls to set up a lemonade stand. The idea came from the story of another little girl, diagnosed with cancer just before her first birthday, who at age four opened her own stand with the goal of raising $1 million for her hospital. Only days before she died did she realize she would reach her goal.
How did Emily and Lily do? The totals are not yet in -- but they did raise $70 right away on the first day of the sale. And they reportedly had a grand time running their business.
Young patients that are diagnosed with a form of leukemia called acute lymphoblastic leukemia (ALL) are at an increased risk of relapse if they have a high body mass index at the time of diagnosis.
Dr. Anna M. Butturini, lead investigator of a study that reported the findings, said "Obesity is associated with lower probability of cure in pre-adolescents and teenagers with ALL. A current analysis suggests that the same is true for adults with the same disease".
Dr. Butturini thinks that there is a need for better understanding of why obese patients have an increased risk of relapse. If this is found out, then better therapies for these young patients could be potentially designed.
Young Noah Maxin , just 11, died last week after losing his battle with leukemia. Such news would be sad enough were it not for the fact that Noah's parents had previously interrupted his chemotherapy regime with a holistic approach to cure his cancer. Noah's parents were concerned about the adverse effects that chemotherapy would take on Noah's body and instead sought alternative therapies.
While alternative therapies do have their place and can help, there are some instances when Western medicine should be respected. Cancer, I believe, is one of these. I have known a number of friends who have followed a chemotherapy schedule while using alternative therapies as supplemental support. The efforts have given them wonderful results. But I do question the wisdom of gambling with a child's life and ignoring Western medicine all together. In the case of Noah it seems his parents took a chance and lost their son. Would he have perished had they pursued traditional chemo for him? Nobody can tell, but now his parents will always be plagued with the question of what if?
Rise to Action, a conference series that aims to help young adult survivors of childhood cancer explore topics relevant to their long-term health care and survivorship, is coming to New York City on October 6 - 7. The conference series is hosted by the Children's Cause for Cancer Advocacy (CCCA).
How are children surviving cancer today? Better than ever before. Some childhood cancer patients, now in their young adult years, are expecting to reach milestones in their lives others before them never would have reached.
September is Childhood Cancer Awareness Month and this year, the Candlelighters Childhood Cancer Foundation is focusing on raising awareness of the specific health issues of adult survivors of childhood cancers. According to the 
According to a group of experts and a recent 
Survivors of childhood acute lymphoblastic leukemia (ALL) face an increased risk of complications as a result of their cancer treatment. For a variety of reasons, many survivors avoid simple exercise and lifestyle changes that could reverse this damage, according research out of Memorial Sloan-Kettering.
The Child Protection Agency in Quebec, Canada, is not going to force the parents of a 3-year-old boy to give him chemotherapy for cancer in his brain and spinal cord, allowing them instead to pursue alternative medicine
Unnur Valdimarsdottir and team, from the Karokinska Institute, Stockholm, Sweden, recently published a 
A recently-published
Chemotherapy is harsh, which is good when it comes to killing cancer. What's not-so-good is that it can also cause hair loss, inflict nausea, and disable the proper functioning of all sorts of organs -- including the ovaries. Chemotherapy, therefore, can affect female fertility. 
The process of genetically modifying something is widely believed to be bad (hence the organic movement) but what if genetic modifacation cured cancer? Don't worry, I'm not talking about your food here -- 
When researching children's hospitals and oncology programs, you should have a list of questions that are relevant to the child's cancer. The same questions should be asked at each hospital so you can compare answers and make an informed decision about where to seek treatment.
The two little girls who recently fashioned their own cardboard lemonade stand and sold their homemade refreshments for 50 cents a cup are not your typical lemonade entrepreneurs. What makes them stand out from the usual crowd of lemonade peddlers? These girls -- Emily is four and Lily is six -- are both cancer patients, undergoing chemotherapy for acute lymphoblastic leukemia and raising money for cancer research.
Young patients that are diagnosed with a form of leukemia called 
Young
