As treatments for childhood cancers have improved, more and more survivors are entering their reproductive years, and are thinking about starting families of their own. The possibility of losing the ability to have children due to cancer treatment is very concerning to many families. Fertility is an extremely important quality of life concern for childhood cancer survivors.
Some cancer treatments may affect girl’s ovaries or a boy’s testes. This may last for a short time after completing cancer treatment. Or it may last a lifetime and cause infertility. Infertility is the inability to have biological children. Infertility from cancer treatment is called a late effect. Your child’s risk of late effects depends on the cancer type and treatment plan. Ask your child’s doctor if planned treatments might have short- or long-term effects on reproductive health.
Because infertility occurs secondary to cancer treatment, and even small doses of chemotherapy can cause temporary azoospermia or damage to sperm DNA, banking should ideally be offered during the initial staging and diagnosis of disease before treatments are initiated.
Cryopreservation of semen, or sperm banking, is an easy, widely available means to preserve fertility for adolescent and young adult males with cancer, but it is not an option that is often available to young male cancer patients. It is recommended to all boys over 12 who will undergo chemotherapy, radiation or surgery, which could harm their ability to become fathers someday.
Testicular tissue freezing is an option for boys who have not gone through puberty; freezing testicle tissue may help preserve fertility. This is still an experimental approach.
In this video, former CHOP cancer patients discuss why they made the decision to bank their sperm, and describe what the experience was like for them:
Ideally, this should occur before the start of therapy, when a window of opportunity may exist to preserve the patient’s future reproductive potential.
Ask your doctor!
The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is a network of more than 20 children’s hospitals
that conduct clinical trials of new therapies for children with brain tumors with the mission to identify personalized treatment challenges.
PNOC was formed to provide children with brain tumors access to individual and personalized treatment based on the molecular biology and genetics of each tumor.
Participating hospitals include:
PNOC is running clinical trials like nanoliposomal irinotecan and immunotherapy vaccine (H3.3K27M) for Diffuse Intrinsic Pontine Glioma, modified measles virus for recurrent medulloblastoma, Everolimus for recurrent or progressive low-grade gliomas, Vemurafenib for children with recurrent/ refractory BRAFV600E-mutant gliomas.
To find out if your child is eligible to enroll in a PNOC clinical trial you have to contact the closest participating site.
There are some childhood cancers that have experienced few treatment advances in the past decades.
The lack of effective treatment options can be a nightmare for patients and their families.
The slow pace of translation for promising research from the laboratory to the clinic has created a “pre-clinical gap” meaning that basic scientific research is not reaching children in the clinic.
There are some researchers that are seeking to be the bridge and accelerate the pace of the research and the initiation of clinical trials.
The Children’s Cancer Therapy Development Institute is a unique independent non-profit organization focused on the ‘preclinical gap’ in childhood cancer research.
Their mission is to bridge scientific discovery and the initiation of clinical trials.
One of the cancers that require urgently more research and treatment options is Diffuse intrinsic pontine glioma (DIPG), a rare and brutal tumor of the midbrain. Decades of clinical trials have shown that DIPG tumors are insensitive to traditional chemotherapy.
Dr. Noah Berlow, is a post-doctoral fellow at The Children’s Cancer Therapy Development Institute (cc-TDI, cc-TDI.org) that identified the IL13RA2 gene as a specific target for DIPG cells which is absent in normal brain cells.
This discovery opens new avenues to attempt and treat DIPG. This study was recently published in PLOS ONE.
This project took its inspiration and it was done thanks to the support from The Lyla Nsouli Foundation For Children’s Brain Cancer Research and With Purpose, both projects founded by childhood cancer parents.
A strong reminder that as parents we CAN make a difference and find a cure for cancer if we join our forces.
To read more about it click here.
The story of Rachael Au Hoon, a resident of Waikapu, Hawaii it’s a reminder of how parents agonize when a child is diagnosed with cancer.
Her 3-year-old daughter Kahalau, was diagnosed with stage 3 neuroblastoma after a period of becoming weak, not being able to walk in a straight line, random episodes of fever and the feeling that something was not ok.
Kahalau´s dad shared in an interview published last March 21 of 2018, at The Maui News the following advice,
lesson of accompanying his daughter undergo several sessions of chemotherapy and surgery, which we believe it can help other parents to find some bravery.
“They get you by the tail because you want to save your daughter’s life so you’ll say yes to everything,” he said.
“The best thing to do is educate yourself with that specific cancer they have and do research on every medicine.
Be that advocate parent and use your intuition. It will save your child’s life”.
Kahalau´s parents created a facebook page where they share about Kahalu´s cancer journey.
If you have a similar story we encourage you to visit their page to find support, knowledge, and compassion.
For more information about the story follow this link.
Jennifer a pediatric nurse dedicated to raising awareness for all types of cancer published a small note in The oncology nursing news about the increased risk of developing obesity-related cancer in overweight or obese adults who are childhood cancer survivors.
She explains that higher amounts of body fat cause chronic inflammation in the body, this inflammation can damage our DNA increasing the risk of developing obesity-related cancer.
At highest risk of obesity are childhood cancer survivors of ALL (Acute Lymphoblastic Leukemia) or those who received radiation, more specifically the brain, and total body irradiation (TBI).
Survivors who get cranial radiation and also receive glucocorticoids have an increased risk for obesity.
Raising awareness of the importance of proper nutrition and exercise should begin as early as possible to avoid or at least control the obesity as a survivor.
Here are some tips that can help your child eat well, taken from the guide for parents of children with cancer from the National Cancer Institute:
Reader’s digest created a space for parents with kids with cancer; they interview 5 parents, each of whom had a child diagnosed with cancer.
Fighters, activist, heroes, and their inspiring stories of courage and bravery that can give us perspective on how strong and capable we can be
if we get together and fight together as parents to move forward with the purpose of finding a cure for childhood cancer, there is so much we can do for our children…
Gretchen Holt- Witt founder of Cookies for kids with cancer that dedicates to raise funds for research to develop new, improved, & less toxic treatments for pediatric cancer by selling cookies. Their efforts have always been inspired by their son Liam’s who lost the battle with stage IV neuroblastoma.
You need to know you did everything you could, everyone who gets involved is a hero- Gretchen Holt-Witt
Barbara Canales, founder of Ready or Not Foundation that promotes national and international awareness of pediatric brain cancer, and raises money for research in order to find better treatments and a cure for pediatric brain cancer. Her efforts are dedicated to her daughter Jackie diagnosed with anaplastic astrocytoma and its now in remission.
Nobody is ready for cancer to come into their family. No parent can be ready to hear the terrible statistics that accompany high-grade pediatric brain cancer.
Whether you are ready or not, one out of every three hundred thirty (330) parents will find themselves facing a cancer battle with their own child.- Barbara Canales
Lisa Tichenor, founder of the QuadW foundation that provides financial support to people and organizations pursuing innovative ideas and opportunities in the areas of higher education, sarcoma research, personally transforming mission experiences and general philanthropy.
The QuadW foundation was formed in honor of Willie, Lisa´s son, who lost the battle against Osteosarcoma when he was 19 years old.
“It’s not so much where you go, but what you do there and who you do it with.” – Willie Tichenor
Nancy Goodman, founder of Kids V Cancer that promotes pediatric cancer research by identifying structural impediments at key junctures in the
research process – new drugs, tissue donation and access to funding – and developing strategies to address them.
They explore and support a number of efforts to create a standard by which children, including very young children,
are included in early clinical trials She started Kids v Cancer after her son, Jacob Froman, died of medulloblastoma at age 10.
At the time of Jacob’s treatment, there were several exciting, molecularly-targeted therapies in development or recently approved. However, there were few pediatric trials of these novel therapies, and there was no information as to whether any might benefit Jacob. Jacob, at the age of 10, died early on a Friday morning in January 2009. The next day, I opened my laptop on the dining room table and founded Kids v Cancer with the goal of changing the landscape of pediatric cancer research. –Nancy Goodman (taken from https://www.kidsvcancer.org/how-the-race-for-children-act-will-get-drugs-to-kids-with-cancer-the-cancer-letter/)
Frank Kalman, founder of End Kids Cancer Foundation a pediatric cancer research charity that educates families to get a better cancer treatment and provides financial support for research and clinical trials in order to cure neuroblastoma (NB), with an emphasis on non-toxic treatments. He created this organization inspired by his battle with his daughter Calli, who was diagnosed with neuroblastoma when she was 10 years old.
You make the most difficult decisions up front when you know the least. The centers you go to, the doctors you see will make a huge impact on the outcome of your child and identify those centers took me 10 years on how to do that. And I have figured it out that the most important thing that you can do as parents is confirm, anything anyone tells you, confirm it- Frank Kalman
Us, parents with kids with cancer, we learn so much during this battle that we are able to share our knowledge and effort to help other parents that are in the same situation.
If this is what it takes to find a cure, we encourage you to stand up against this battle and to GET INVOLVED, GET INSPIRED, TOGETHER WE CAN MAKE IT HAPPEN!
Sometimes as parents we have a difficult time in finding the right words to explain our children about the therapies they are getting
and we wonder if there is a simple or interactive way to explain them.
So here is Jake, an animated eight years old boy created
by The Brain Tumour Charity that can help you explain your child about treatments used
in the management of brain cancer like neurosurgery, scans, chemotherapy, radiotherapy, and steroids.
St. Jude Children’s Research Hospital completed the first whole-genome sequencing of cancer survivors
and the conclusions where that 12% of childhood cancer survivors carry germline mutations that put them at increased risk of developing cancer later in life.
Researchers recommended expanding genetic screening and counseling to:
Childhood cancer survivors who have been diagnosed with second cancers and whose pediatric cancer treatment did not include radiation therapy.
Survivors whose initial treatment included radiation therapy and who have developed secondary breast cancer, thyroid cancer or sarcomas at the radiation treatment sites.
The findings will help to design personalized therapy, understand better the disease and early detection of second cancers based on the genetic profiles of children diagnosed with cancer.
In this video, Leslie Robison, chair of the St. Jude Department of Epidemiology and Cancer Control, discusses the genetic sequencing of St. Jude LIFE cohort of childhood cancer survivors and the implications of the project.
Also, researchers at the University of Michigan and C.S. Mott Children’s Hospital found that identifying mutations present in tumor tissue allows precision oncology to determine better treatment options for each patient using individualized genetic information.
In this video of Precision Oncology, we see Rajen Mody, MD explaining the importance of genetic sequencing for childhood cancer.
The Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center also offers individualized programs to reduce the risks of primary or secondary tumors. Here is the story of Amy Kindstedt a 9-year-old child diagnosed with pleuropulmonary blastoma (PPB), a rare tumor of the lung and how the genetic counseling helped her brother to an early detection and treatment of the same type of cancer.
These new methods are improving the survivor rates of kids with cancer.
The earlier its done the better chance of identifying the right therapy before they develop resistance and early detection of second cancers.
Ask your doctor for a referral to a genetic counselor.
It’s completely free and makes it easy to record your symptoms, nutritional concerns (record food reactions), moods, medication reminder, and more.
The app is available in 7 countries: the United States, Canada, Australia, Ireland, New Zealand, Singapore, and the United Kingdom*.
Keeping track of your child’s medical care can be really helpful for you and your doctor.
After her son was diagnosed with cancer at age 11, Danielle Cook, MS, launched herself into better understanding which foods might best help him during treatment and then, as a cancer survivor, for life beyond. Today she runs Happily hungry, a nutrition program for young cancer patients, adolescent cancer survivors, their parents, family, and caregivers. She also published a book with Smart Recipes for Kids with cancer.
As parents, we often get frustrated and confused about what kind of food we need to give to our children and during therapy, it becomes a challenge with all the side effects. Danielle a mom, chef, author, and parent of a cancer survivor, has been demonstrating, educating and advocating the benefits of seasonal whole foods in battling childhood illness for more than 12 years.
Here are some of her recommendations in a nutshell:
· Lemon, lime
· Plain yogurt
· Fermented beverages
· Fruits and vegetables
· Whole grains
· Dried fruits
Each survivor has its own unique need so there is no specific recommendation for everyone. She recommends creating a program for each patient with accessible and affordable ingredients, texture appealing to kids, recipes who are easy to follow and that satisfice the whole family with the purpose to empower parents and child to make better food choices and provide options to food challenges during cancer treatments.