Get involved, get inspired, together we can make it happen.

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 its 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 as parents 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!

Do you have information to share with other parents?  contact us. 

The Role of nutrition in pediatric cancer patients.

 

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:

  • Helpful foods for the common side effect of cancer treatments

 

Healing foods

Nausea
Mouth Sores
Diarrhea
Constipation
·       Ginger

·       Lemon, lime

·       Peppermint

·       Plain yogurt

·       Rice

·       Broths

·       Cucumber

·       Avocado

·       Oatmeal

·       Watermelon

·       Applesauce

·       Rice

·       Potatoes

·       Bananas

·       Fermented beverages

·       Fruits and vegetables

·       Legumes

·       Whole grains

·       Dried fruits

·       Hydration

 

  • Increase intake of Vitamin C helps with fewer delays in therapy, less toxicity, shorter hospital stays
  • Increased intake of Vitamin E and C have fewer infections.
  • Fast food can be replaced with real food smoothies, ingredients that can help upset stomachs, food can help and heal and it’s critical to help the child to overcome the diseases.
  • Patients with Neutropenia (low number of white blood cells) required a Neutropenic diet that limits certain foods to limit the exposure of bacteria, no raw and uncooked fresh fruits and vegetables.
  • For a gut healing process supplements like L- glutamine, Slippery Elm, Marshmallow root, Lemon balm and Aloe can be very healing and probiotics are crucial.
  • Increased fiber to improve bowel function.
  • Milk thistle to support liver function.
  • Antioxidants foods like vitamin C, vitamin E, selenium, and zinc.
  • Detoxification and rebuilding for immunity of survivors has to be very gentle and gradual process, high in antioxidants and anti-inflammatory foods (including flavonoids).
  • Add mood building food like whole grains, walnuts and complex carbs.
  • Eliminating caffeine and add relaxing teas.

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.

To listen to her full lecture about the role of nutrition in pediatric cancer treatment you can watch this video:

“Let food be your medicine and medicine be your food.”  ― Hippocrates

Use your intuition.

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.

My child´s cancer is a project that is committed to helping the families with kids with cancer to do research and walk this path with you, for more information of what we can do for you please write to us.

Some inspiration.

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.

Cancer advice from parents of children diagnosed with Wilms’ Tumor.

  1. Partial nephrectomy (nephron-sparing surgery) its an option that needs to be explored, the surgeon will try to save some normal kidney tissue, if possible. The surgeon may remove the kidney containing the most tumor with a radical nephrectomy. In the other kidney, the surgeon may do a partial nephrectomy, removing just the tumor and a margin of normal kidney around it. Another option might be partial nephrectomies on both kidneys. Because Wilms tumors are rare, few doctors outside of those in children’s cancer centers have much experience in treating them.
  2. In the United States, surgery is the first treatment for most Wilms tumors. In Europe, doctors often prefer to give a short course of chemotherapy before the surgery. There seems to be no difference in the results from these 2 approaches.
  3. Top Surgeons in the field include:
    1. Peter F. Ehrlich, M.D., MSc from University of Michigan: http://surgery.med.umich.edu/pediatric/healthProviders/ehrlich.shtml
    2. For Nephron-sparing surgery Andrew M. Davidoff, MD from St. Judes Children’s Research hospital: https://www.stjude.org/directory/d/andrew-davidoff.html
    3. Daniel von Allmen MD from Cincinnati children ’s, Andrea A. Hayes-Jordan, MD from MD Anderson Cancer Center. https://www.cincinnatichildrens.org/bio/v/daniel-vonallmen
  4. Medical Oncologist Marcio H. Malogolowkin, M.D from UC David Health System: http://ucdmc.ucdavis.edu/publish/providerbio/search/21829
  5. Radiologist Thomas E. Merchant, DO, Ph.D. from St. Judes Children´s Research hospital: https://www.stjude.org/directory/m/thomas-merchant.html

 

Tips:

  • If your child is diagnosed with this condition, do not prod or push on the child’s belly area. Use care during bathing and handling to avoid injury to the tumor site.
  • Make a list of all medications. Write down questions to ask your doctor.
  • Call a healthcare provider immediately if there are symptoms of tract infection (fever, pain during urination.
  • Use non-steroidal anti-inflammatory drugs only under medical supervision. Since they can cause vasoconstriction (contraction) of the renal arteries and decrees the blood supply to the kidneys.
  • “ The internet is a great place to find this information. But you do need to be careful. If you’re not, you could fall down the rabbit hole, the following link after link and get completely overwhelmed.” http://www.searchmydiagnosis.com/research-cancer/research-wilms-tumor/