The child is radioactive after the infusion so you cannot be with him for about one week.
If you have a little child that doesn’t know how to keep himself busy (playing by himself or using an iPad for example)
and you are about to do an MIBG therapy, teach him how to do so.
It will help pass the time during the week long isolation from his parents.
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.
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.
Sam a child diagnosed with Diffuse Intrinsic Pontine Glioma, he was not eligible for clinical trials because he was only 2 years old. Sam lost the battle against cancer, but his mom, Erin Benson, never gave up to make him happy. Inspired by the support of friends and family she founded With Purpose a youth-led movement dedicated to creating a world where kids with cancer have access to safe and effective treatment.
Recently she wrote a blog post “I’m the Executive Director of a Nonprofit… and a Waitress, the invisible cost of cancer”, where she shares a very delicate and not so openly talk aspect about going through childhood cancer: the financial aspect.
Everyday life struggle, effort, pain, and love, continue after we face a cancer battle of our relatives and loved ones and still we have to pay the bills.
We recommend you to read her blog post about courage, about standing up, about coping and resiliency, about being patient with yourself.
Whenever you feel desperate by not knowing what to do, follow her advice:
“What you do is hold your people close and love them.”
“What you do is find gratitude for what you have, knowing that nothing is permanent.”
“What you do is the best you can.”
We hope this can bring some inspiration to you.
Part of an integrative oncological treatment is to take care of all aspect of our children; music is a powerful expression tool that reduces anxiety, depression, and pain, it can also help the children to cope better with hospitalizations.
In Music therapy, the intention is to promote health by using music experiences including instrument play, movement, singing, etc.
In this video Ryan Judd from The Rhythm Tree shares with us, an interview with Catherine,
mother of Zoe who was diagnosed with a brain tumor and after the surgery music therapy helped her a lot to work out with her emotions.
For Ryan, Music therapy is honoring the child spirit and improving the quality of life.
Consider complementary methods in this road since it can bring a lot of benefits in the quality of life of a child.