Cancer Kids: they deserve more!
Coral, a Certified Holistic Nutritionist from Reimagine Healing shared briefly last week about her family’s journey through the pediatric cancer diagnosis of her young son and the steps she took to support her son’s healing. Today she challenges us with numbers pertaining to pediatric cancer and practical ways to support the families.
Said another way, 60% of pediatric cancer survivors will suffer late effects of treatment. You see, the treatment for cancer can be considered more brutal than cancer itself. After all, the standard of care is to treat cancer with known carcinogenic (cancer-causing) agents. No, I don’t see the logic in that either.
However, when we parents are faced with losing our child, us mama and papa bears will do everything we can to save our child!
In case you don’t quite know what is meant by late effects, allow me to share a shortlist with you.
- Difficulty with focused thinking (sometimes called chemo brain)
- Early menopause
- Heart problems
- Reduced lung capacity
- Kidney and urinary problems
- Nerve problems such as numbness and tingling
- Bone and joint problems
- Muscle weakness
- Secondary cancers
Imagine a group of ten children with cancer. Now, take eight of them and tell them “You are not only going to face cancer but you are also going to have to fight for your life against another illness… and we don’t know which illness it will be.”
That reality is what parents of cancer kids fight against. We struggle to find peace amid a bunch of “new normals” only to be hit with the possibility of our child being one of the eight. It is hard to heal from PTSD (present traumatic stress disorder) with odds like this hanging over our heads.
I cannot even begin to comprehend this statistic. Out of those ten children we imagined above, all of them will face a serious chronic illness. (9.5 people is rounded up to 10 people)
Each drug used in cancer treatment comes with its own list of negative impacts on the body. Some will negatively impact the heart while others will weaken the respiratory system. My son was given ten different chemotherapy drugs, so just imagine how many of his organs and body systems were negatively impacted!
It was exhausting to research the ways I could prime and protect his little four-and-a-half-year-old body during treatment and beyond.
Please tell me another area of life where a 700% higher risk of anything is acceptable or embraced. I haven’t been able to find one.
This statistic is similar to the 80% stat above. Again, we get to tell our cancer kid they are likely going to face another fight for their life, all while their sibling doesn’t have to.
The list of not fair just keeps growing.
It is also extremely difficult for non-cancer siblings to witness and experience the journey of cancer! Don’t forget the siblings!!
A fellow cancer mama broke this down to an even more dismal number… let me see if I can do her work justice.
Get ready for an equation.
$5 Billion (annual cancer research funding from grants and government)
4% of $5 Billion = $200 Million
162 types of childhood cancer (roughly)
$200 Million ÷ 162 = $1.2 Million
(this is not divided equally as some subsets receive a much larger percentage)
These numbers show you that $4.8 Billion is given to adult cancer research!
Tell me, is this fair?!
Despite these statistics being publicly accessible, most pediatric cancer patients are given NO SUPPORT for their bodies and lives to decrease these numbers. That fact is unacceptable!
If doctors know that our children have an increased risk for secondary complications why are they NOT incorporating treatments, suggestions, holistic modalities, and other specialists (nutrition, Chinese medicine, etc) into our child’s “team”?
Let me put something into perspective for you. At our first hospital, my son had nine (9) oncologists on his team. Nine cancer doctors and zero other specialists, despite the fact that these drugs are known to impact the endocrine system, nervous system, respiratory system, cardiovascular system, musculoskeletal system, urinary system, digestive system, immune system… EVERY. SINGLE. SYSTEM. Our second hospital had one oncologist (who would reach out to two others if necessary) and still zero other specialists.
How are these statistics supposed to change if the medical establishment isn’t even providing the resources we need?
I mean, most hospitals have these specialists (nutritionists, endocrinologists, neurologists, etc) on staff. So, why are our children not worthy of them on their team? Do you know how you get these specialists on your team? Something has to go wrong OR you have to pay for them privately. Basically, your child has to have a complication requiring a specialist or you have to work overtime to build a team for your child. As if loving them, caring for them, fighting for them medically, trying to work so you can maintain medical benefits, juggling schedules and care for your other children, trying to make sure your house is stocked with food, driving your cancer kid (CK) to and from doctors appointments, and so much more isn’t enough of a burden for parents to carry.
Do you know how these statistics change? PARENTS! Parents are the key here.
Parents are the ones who read studies until they go blind. Parents are the ones caring for these precious warriors no matter what ups and downs come throughout treatment. Parents are the ones who suffer a loss when treatment fails miserably and their child is healed in heaven. Parents are the ones bearing the financial burden, some even lose jobs. Parents are the ones who feel the impact of this journey so acutely that they are often transformed into loud-mouth activists because they know how grueling this journey is, how their child gets shafted, how their insurance is a joke because it only covers a fraction of what is needed. Parents are the ones to stay up with their child at night. Parents are the ones who post incessantly about childhood cancer and the need for change. Parents are the ones that show up for the next wave of childhood cancer parents and tell them things like
“I know there’s no normal to go back to, but I’m here to help you build a new one. (And I’ll bring snacks.)”
That sentiment was taken from a greeting card by @emilymcdowell_.
Do you know how else these statistics change? YOU!
You are the ones that can lock arms with these warrior parents of small and mighty heroes. You are the ones that can help stock refrigerators and pantries. You are the ones that can provide care and support for the siblings so they don’t get lost in the shuffle. You are the ones that can offer some of your time to help fold laundry or mow the lawn (or offer to pay for a week of lawn care).
You are the ones that can keep the ripple of awareness moving forward by sharing what parents share, sharing what you’re watching families go through, and more. You are the ones who can open your wallets and give to these cancer-fighting families or to the organizations the families suggest. *Not all cancer organizations are worthy, sadly.* You are the ones that can initiate a phone call or send a card (flowers are iffy as they can bring airborne contaminants into a home that needs to be close to sterile). You are the ones that can be the shoulders to cry on or the support when we cannot stand. You are the ones who can help our message get out and be heard by more ears in more cities across the globe.
As a Momma Mentor with MaxLove Project, I have the honor of coming alongside cancer mommas (and hopefully pappas soon, too) to share education, encouragement, and empowerment with them.
The family that MLP continues to cultivate is full of love, compassion, care, grace, encouragement, light, and positivity. Through MLP I have been blessed to help handfuls of women work to navigate the cancer journey and practice self-care because let’s face it, being a full-time caregiver is taxing on the body like no other job. Through my business at Reimagine Healing, I get to incorporate those same principles (education, encouragement, and empowerment) and more to help not only the mommas care for themselves but for the patients to have a more thorough support structure. One goal is to make sure every childhood cancer warrior has the tools to THRIVE through treatment and beat all the odds that are currently stacked against them. Another goal is to ensure that these families have a solid community to lean into when they have questions, need to vent, or just need to feel known by others who get the childhood cancer journey.
BE THE CHANGE. Let’s shift the stigma and cancer paradigm together.
*Images sourced from MaxLove Project.