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 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!

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

Obesity and Childhood Cancer.

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:

  • Talk with a registered dietitian.
  • Learn what types of foods and drinks are best for your child.
  • Some children may be advised to get extra protein and calories.
  • Encourage small, frequent meals.
  • Check before giving vitamins or other supplements.
  • Take special care with food to lower the risk of infection.
  • There are some foods that can help reduce side effects.
  • Call about changes.
  • Ask about activities that may be recommended to your child.

For more information about the relationship between obesity and childhood cancer click on this link.

 

Get yourself into doctors’ systems

In case you have identified the best doctor in the world for your child, try to get yourself into his/her patient’s system by getting their second opinions at an early stage. In case you will need such a connection in the future, processes will be MUCH faster and easier when you already have a patient identification number with all the medical information already in their system.
If you travel abroad, use your time to meet with leading doctors face to face and establish your network for future needs.

Always think forward and prepare for future needs: in case there will be an escalation down the road, this will save your child precious time, save you the need to go through bureaucracy and will allow a direct channel of communication with the best doctor for your child.

NeuroBlastoma: prepare your child for an MIBG therapy

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.

7 First Steps When Your Child Is Diagnosed

If your child has recently been diagnosed with cancer, you must accept the fact that your life will never be the same. What you are about to go through is a new, unfamiliar, long and emotional experience. Difficult as it is, you must get over the initial shock and start to take action. Keep your thinking positive at all times and begin to prepare for the uncharted waters you are about to sail through. Now is the time to draft family and friends: it’s no time to be shy and they want to help. Let them! Assign tasks which will help you focus on your child’s most important needs and prepare the ground for the tough experiences ahead.

You must know that with cancer it is impossible to foresee what will happen on any given day, at any given moment. You must be available as parents first and foremost to see to the needs of your child, both medical and psychological. You must be prepared to be active participants with the medical staff on all medical procedures and treatments. All the other minor things, leave to friends and family.

Here are seven steps that parents should consider as a starting point:

  1. Choose a spokesperson: A close friend or family member who will be the main contact between you and the rest of your friendship/family circle. This spokesperson will accept all the phone calls from people wanting to know what is new and how is your child doing, and will coordinate visitors traffic. For example, when a friend wants to come and visit you but is not sure what to bring on a visit, what food if any is needed, when is a good time to visit etc. Keep in mind that your communication to your world does not end with you sharing the cancer diagnosis, in fact, you will find many concerned people attempting to communicate, which may burden you more. Start a Facebook page where you can share updates and photos and where your friends and family can comment and show their support.
  2. Learn about the disease: It is incumbent upon you to research and study everything you can about the disease your child has and the treatments offered. This is the most challenging yet most important advice you will get. As parents, we may never know as much as the doctors, but we must know enough to ask the right questions and understand the answers, in order to negotiate the best treatment for our child.
  3. Appoint someone to do research about your child’s specific illness. See where the experts are and what they recommend as treatment (the internet is a great resource). Use those experts for second opinions, as consultants, and see if the treatments your doctors recommend are aligned with those of your consultants. If not, understand what the differences are and WHY are their differences. Keep in mind that with juvenile cancer often time is critical. Since it could be that the best treatment will be available away from home, you must look for it immediately or as soon as possible after the initial diagnosis.
  4. GET A SECOND OPINION! ALWAYS! ALWAYS! Send biopsy to an independent third party for a second opinion. Make sure that the opinion is not just on the original diagnosis but on the protocol of the recommended treatment as well. A second opinion is crucial in order to (1) prevent your child from getting treatment for the wrong type of cancer, (2) avoid losing valuable time if you are on the wrong track, and (3) tailor the best treatment to your child’s specific condition, as different children may respond differently to the same treatment. Remember: Any good Oncologist would welcome second and third opinions. Additionally, You should always keep a full medical file of your child.
  5. Take charge of the discussions with the doctors and stay engaged and involved with the medical staff (doctors and nurses). This will allow you better communication with the staff and sometimes you may actually prevent mistakes such as dis-communications or misunderstandings between the doctors and the nurses. You are your child’s gatekeeper.
  6. Contact your Insurance: Appoint someone to be the point man for the insurance company, to find out what is covered and what is not. Find out how much they will cover for treatment that involves travel etc. What’s the procedure for new and experimental treatments as well as other needs that may arise during treatment? Keep in mind that right now, at an early stage of your journey, that might not necessarily seem relevant but you should be prepared if later it becomes so. Insurance companies are generally huge bureaucracies and travel for cancer treatment brings out the most bureaucratic in these companies. This is a classic example of something you can hand off to a friend or relative to do so that you can focus on caring for your child.
  7. Chores: The last thing you should be thinking of is shopping, cooking, laundry, cleaning etc. However, your sick child should have healthy food available and a clean environment to live in, especially when his/her immune system is weakened. Your friends and family can be a great resource for you to utilize for these things. Ask a family member to filter your mail and take care of your bills during this time so you won’t find yourself suddenly disconnected from the grid. Utilize them, so that your small daily issues do not become big issues.

It’s a long journey. Stay strong. Stay positive. Do your best. Be proactive.