April 3rd, 2016, our world was turned upside down with the word –
CANCER. Our precious 4 1/2 yr old had entered the fight of his life.
Coral, a Certified Holistic Nutritionist from Reimagine Healing shares briefly 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.
You have just had the rug yanked out from beneath your feet. What you thought you knew has been thrown into a pile out behind the barn of your mind as the manure one chucks from a barn floor. The hopes and dreams you had for your precious child become expectation fodder as you grasp for your next breath.
The Diagnosis
Your child has just been diagnosed with cancer. Now what?
Very quickly your world fills up with “white coats”, as I call them. Roadmaps of treatment are thrust at your chest like arrows, piercing your heart and shaking you to the core. There is much mentioned about what has to be done… what is going to happen… and for most of it, you have little to no input. Those white coats visit you frequently yet you constantly feel like you have no new information.
The Dangerous Question
When you finally catch your breath, regain strength in your knees, and have the first clear thought… you start to ask yourself
“Is this how I want to treat my child?”
This is a dangerous question. Why?
- A) you are on shaky ground when you question the standard of care
- B) if you find you don’t want to do it their way you have little to no resources to pull from.
That was my experience.
I quickly realized how ill-equipped the medical system is for actually healing human bodies.
Nutrition Ignored
As a Certified Holistic Nutritionist, I was shocked when the white coats, right out of the gate, told me “Let him eat whatever he wants.” Say what?! That is never good advice for anyone… ever, let alone a small child who has entered the fight of his life. Having this huge chasm between them and myself led me to remain cautious throughout the journey.
Standard of Care Inconsistent
The standard of care made NO SENSE to me. Why are they treating cancer with known carcinogens (cancer-causing agents)? Why are they using steroids if I can’t get the same answer from three different MDs? Why would my son endure an extra year of treatment compared to his female counterparts when the study that decision was based on hasn’t been challenged in over 40 years?
(*Since my son started treatment the COG – Children’s Oncology Group – has since looked into and decided to change this protocol.)
Many Protocols “Just-in-Case”
I would ask a ton of questions. Most of the answers were never sufficient for me. Mainly because I didn’t think this was the best way to treat my son. I mean, let’s be real, he didn’t have a chemotherapy deficiency (he was given 10 different chemotherapy drugs). Nor a steroid deficiency. He was never constipated yet they gave him Miralax and Senna daily (until I woke up!). Miralax is not intended for use in children and is not intended for extended use but they would give it to my son DAILY as a prophylactic – a just-in-case medication. Once I realized certain things were not required, I had them change the instructions for all of those items to “as needed” because I got tired of refusing them.
The Talk and Threat of CPS
Then came The Talk… you’ve heard about it, but until you have been in the room having it you just don’t get it. It’s the conversation where they gently threaten you with CPS should you decide to not comply with the required treatment. People still think this doesn’t happen. I’m telling you IT DOES. When you are new to the ways of the medical system it is scary, overwhelming, and you feel your power lessen.
My husband and I certainly didn’t have the finances to lawyer up and fight and there are no organizations providing pro bono lawyers either – at least not in our area. So, I bolstered what courage I could, wrapped it in anger, hit my knees in prayer, and suited up to fight for my son the best I could. Since I couldn’t protect him from the drugs themselves I opted to prime and protect his body from the side effects.
Power of Knowledge
With each new phase of treatment, we were given cheat sheets about the drugs that would be included in that phase. I’m sure you’ve received a cheat sheet before. It’s the single 8.5×11 sheet of paper with the drug name, its intended use, and a few side effects listed to help you feel informed. What a load of crap. When you hop on your computer, open your search engine of choice, and type in the name of the drug on the page, you quickly realize the side effects are a mile long and some of the intended uses would simply blow your mind. Yet, I found each of these cheat sheets to be a road map to hope and empowerment.
I took those sheets, inputted the information in a search engine, and when that mile-long list of side effects was spit out I categorized them according to the body system. Once categorized I would open my holistic bag of tricks and find what was necessary to both prime and protect my son’s organs and systems.
Restricting Natural Supplements
Remember, their nutritional advice was “let him eat whatever he wants” and that was followed up shortly with “no supplementation” along with the fact that “we don’t believe essential oils work”. So, you could see what I was up against. *insert eye roll here* Knowing their stance on supplements, and this not being my first rodeo, I asked this question: What are his whole food restrictions? I was told not to supplement him so I figured there would be some restrictions when it came to whole food. Nope. Not a single restriction regarding whole food. Not one? Not one. He could eat as much fish as he wanted. He could eat as many grapefruits as he wanted. He could eat as much spinach, chard, kale, lettuce, butter, chicken, eggs, milk, etc as he wanted.
Sweet! That means he can have the supplements we use since they are whole foods from the human food chain that have been juice extracted and dehydrated with no fillers and tested for over 200 toxins to an acceptable limit of zero.
Food the Ultimate Support and Defense
I had already made up my mind that they could not control what I fed my son and that meant I would supplement him. Why? Because there is no way his little body could physically consume, process, and absorb all the nutrients he would need to kick cancer’s butt. He would HAVE to have supplemental concentrates to help his body fight and win against leukemia. So, that is what we did. I made a supplemental regimen for him and he soared through treatment. No negative side effects to the myriad drugs he was given – each with their mile-long side effect list. Yes, he lost his hair, but I don’t count that as a negative since it grew back as quickly as it left.
With that fact in the books, NO DOCTOR ASKED WHAT WE WERE DOING. The closest we got to doctor’s inquiring was when an incredible palliative care oncologist looked at my son’s numbers, pointed to his liver enzymes, and remarked, “Whatever you’re doing, keep doing it.” That was all the validation I needed to keep doing what we were doing.
Essential Oils
Then came the use of essential oils. Once again it was me versus them. I know essential oils work – my whole family has benefitted from them for years. So, while we were in-patient, I brought a diffuser to the hospital room. I also had roller bottles of specific oils to apply topically. We used oils that would support his body as it made new marrow, encouraged apoptosis of sick cells, worked to keep any digestive issues at bay, helped him manage his emotions, and much more. We would even detox bathe him while being infused (Epsom salt, baking soda, issue-specific oils). I began to notice that nurses lingered in our room. The CNAs would comment on how wonderful the room smelled. More employees seemed surprised at how joyful my family was despite living on the oncology floor for a month.
More than Food and Oils. The Power of Faith!
It wasn’t just the oils and whole foods. Our faith played a huge role in our journey. I believed in my heart that the Lord is good. I know in my head that he never changes his character. I had to reconcile the fact that my son’s cancer was part of a perfect plan. A perfect plan, yes, but not perfect by my standards. When the shock wore off (it took a few weeks) I was able to switch from the question of “Why my son?” to one of “Why not my son?” Why not my family to shed light on the goodness of God and the benefits of holistic modalities? That children’s hospital quickly became a mission field and we planted not only seeds of spiritual value but also of health, wellness, alternative thinking, and hope.
Not Going Back
My family was so different than the majority of patient families that we made nurses cry. We weren’t mean, let me explain. When we were being discharged at the end of Induction we were told that we would be back at the hospital for a whole host of issues – flu, fever, nausea, vomiting, constipation, diarrhea, neuropathy, fatigue, mucositis, and more. These, of course, are all normal and to be expected on a cancer journey. When the nurse finished listing what was expected and telling us we would be back… I thought to myself, “The hell we will!” I meant it.
I wasn’t about to come back to this place that had flipped my world upside down, threatened me with CPS, and completely ignored thousands of years of wisdom for healing the body. I was gonna show them! And I did. It was six months before my son was required to go back to the hospital for Interim Maintenance (four 4-day stays with ten days in between each stay). When we were finally back at the hospital several nurses saw him and cried happy tears.
Why is this such a big deal? Well, you see, they hadn’t seen hide nor hair of him in MONTHS. They assumed the worst had happened. They were elated that he was alive, happy, “healthy”, and full of energy. It was the first chance we’d had to water the seeds we planted months prior.
Key things we did throughout his treatment: Prayer, Organic food, cooked and prepared at home. Whole food supplementation. Essential oils. Acupuncture. Exercise: running, trampoline, bike riding, Detoxing (mainly baths)
Fast forward 864 days.
By this point, we opted to move our family on faith, without jobs lined up, out of one state and into Idaho. We found a wonderful oncologist at St. Luke’s! From the moment we met him I was talking about ending my son’s treatment early. My husband wasn’t 100% ready to commit to that when we moved but a mere five months later he was and we ended our son’s treatment 1,026 days after it began. That was still 193 days ahead of schedule according to the “plan”. HALLELUJAH!!
Fear and Regrets?
Do we have any regrets? Absolutely not! Do we have any fear? A little. Cancer brings so many emotions to the forefront. Remember, everything we knew, or thought we knew, had been yanked from beneath us. That messes with you, to say the least.
Forever Changed
People think that just because our son’s treatment is finished that our lives magically return to the normal we knew prior to diagnosis. IT DOESN’T WORK THAT WAY. We are forever changed. We are now in our third “new normal”, at least. Every little ache, every little mysterious symptom sends us hurtling back to that night in the ER when our lives took a dark turn. The PTSD is real and sadly it seeps into almost every day.
Triggers need to be addressed, avoided, and dealt with regularly. We can no longer carefreely enjoy birthday parties or restaurants as we have to remain diligent with our food quality. Our bank account is still being squeezed because of the whole food supplementation we provide our son because we are still in another year of firsts post-treatment. We plan to give his body the best possible chance at healing, detoxing, and repairing whatever cancer or treatment did to it. Suffice it to say we now live in a state of “new”.
Mentor Business Born.
Your Guide through the Cancer Journey.
My goal through my business (which came out of the journey with my son) is to bridge the gap between what white coats tell you and what your intuition tells you. As a Momma Mentor with an incredible non-profit, I seek to encourage moms (dad’s too) who are on this journey and wish to incorporate more holistic/ natural elements into their child’s treatment.
I am now in the business of showing people how to do just that – a sort of one-stop-shop or cancer tour guide walking alongside you as YOU craft your own healing journey by discovering a broader view of healing and the myriad of options available to you.
Coral Kenagy, CEO of ReimagineHealing
I utilize the non-profit’s 7-point action plan that focuses on food, exercise, rest, community, meditation, positive thoughts, and lessening toxin exposure. In short, I have become the guide that I needed when my son started his cancer journey. Why? Because there is a need and I plan to fill it in order to give these families THE BEST chance for healing, hope, and THRIVERSHIP. Through education, encouragement, and empowerment I know that the stigma and hopelessness surrounding cancer can change.
