When my son was newly diagnosed it felt as though the ground opened up and swallowed ME. I couldn’t breathe. I couldn’t think. I couldn’t stand. Shortly thereafter I couldn’t sleep. Food lost its appeal. It was a moment by moment struggle to fight off the demons of depression, guilt, shame, and rage. All this, and I wasn’t even the one fighting for my life. It was worse - I was fighting for my son’s life.
As the days, weeks, and months wore on, I continued to focus on my son. Utterly and completely on my son. I tried to stay connected to people in the physical realm but it was hard. We were living at the hospital, fighting off unnecessary medications, pouring in necessary nutrients, and providing other supportive modalities (most against the doctor’s better judgement). But he was THRIVING! So, what I was doing was working - how could I stop… even for a minute?
It was second nature to put my self-care on hold. I mean, my world had been turned upside down and I could no longer tell you what made me happy or filled my soul. Everything I was became about saving my son.
THIS IS NOT OKAY.
Yes, it is a worthy thing to give your all to keeping your child alive! It is admirable. BUT, you cannot pour from an empty cup.
Very quickly the fervor with which you were once able to recognize a detail, address it, handle the situation, and move on is gone. It takes more intention to focus on that detail, even more time for it to register as something to address, etc, etc. How long does it take to get that fervor back? I don’t have an answer for you. Why? Because I’m still trying to get that fervor back for myself. I am slowly regaining my SELF. I can’t help but wonder if I would be struggling with this if I had implemented better self-care policies during my son’s treatment. I will never know.
Disclaimer: I speak from a mom’s perspective here. I in no way mean to diminish what fathers experience… I simply don’t have that viewpoint. So, when I talk about moms doing this or that I do not mean that fathers are absent or uninvolved. My world greatly revolves around cancer mommas and since I am one, that is the place from which I share. Moving on...
So, what self-care did I manage to practice? Well, I drank coffee or tea. Hey, it makes me happy and I will not feel guilty for those thousands of calories I drank over the years as I sought to hold onto ANYTHING that would make any part of me happy. Apparently my mouth was the easiest to satisfy.
I had a friend who was INSTRUMENTAL in helping my body not totally collapse under the crushing weight of stress associated with my child’s cancer journey. She is a massage therapist and her blessing to me was free massages as long as my son was in treatment. Oh how I wish she had moved states with me. What a Godsend! Another friend is a hairdresser and offered free hair cuts during treatment. It sounds so simple, doesn’t it? But it was a HUGE blessing to know that I had that option available to me and I didn’t have to stress about the financial element of it either. Once my son was strong enough and I felt confident leaving him with my parents, I would sneak off for a date with my husband or even a date with a girlfriend.
I had to FORCE myself to go because the mom-guilt was always strong.
My main source of personal therapy came in the form of a blog. A log of the journey, if you will. While I would sit in the hospital room, monitors beeping, TV & Wii going, my boy sleeping… I would type. I would pour out my heart through the keyboard of my laptop. Some days the posts were dark, raw, transparent. Other days they were full of faith and Scripture and hope. Sometimes the post was solely photos so people could watch the journey unfold.
Regardless of the content, the daily habit of writing out updates was cathartic.
I had learned this technique 8 years prior when my family experienced a tragedy of another kind. The blog was a way for me to update everyone who was interested in one place at one time. I was not fielding calls and talking so much I lost my voice this time. Plus, now I have a log of the journey that I can revisit for many reasons. I have gone back to find facts about his treatment, emotions I dealt with during the various phases, and often times it serves as a way for me to continue grieving in a seemingly healthy way.
Transparent thought: it is still VERY HARD to look back and see that sweet little face facing the fight of his life and hearing that little voice share what was on his mind.
Toward the end of his treatment I discovered MaxLove Project. I’ve mentioned them in previous articles so they might sound familiar by now. They were creating a pilot program called BE SUPER Boot Camp. It was a way for moms to connect online in a group and spend 21 days focusing on THEMSELVES. The BE SUPER Plan had 7 points, each scientifically backed and shown to help reduce the effects of stress. Isn’t that what every cancer parent needs during a journey like this? Yes, yes it is. I lunged at the opportunity to be a part of this pilot program, a sort of beta test, if you will. It was incredible. I was introduced to things I hadn’t considered and I was revisiting things that I was already aware of. It had the added bonus of creating a personal community of like-lifed mommas who got it. They knew what I was feeling. Many had very similar journeys - children with the same diagnosis. Others were walking a different sort of journey BUT OUR EMOTIONS WERE THE SAME.
At the end of the Boot Camp I knew I needed to be more involved with this organization and this sort of life-giving community. I went on to become a Momma Mentor with MaxLove Project and co-led a Boot Camp for blood cancer mommas. The program was still in a beta phase and each “glitch” was a beautiful learning opportunity. I loved this group of moms just as much as I loved the original batch. I am still connected to many of them today. This kind of community is what is severely lacking on a national level. It is my goal to change that. More on that later.
Back to self-care.
KEEP IT SIMPLE.
Self-care does not need to look like a fishing trip off grid for a week at a time or a lavish cruise in the Mexican Riviera. It can simply be curling up on the couch with a book for 20 minutes. Spending the time to blow dry your hair instead of throwing it up into a ponytail still dripping wet. It could be splurging for the large/ venti/ bigger cup at your local coffee/ tea chain.
KEEP IT FOCUSED.
Most people think of self-care in only the physical realm - does it feel good to my body? Example: manicures, massages, etc. Do not forget about your emotional health. Does the self-care act bring you joy or anxiousness? We’re going for joy, in case you were confused. What about your spiritual health? Are you doing something that connects you to God? Prayer, meditation, worship music… all these can be self-care and they’re FREE. Your mental health. Does the self-care act require more mental energy? If you have to engage your mind a bunch your body will feel the effects and often not in a relaxing way. What about your social health? Is the self-care act connecting you to the community that you may need to lean into for strength and support or is it pulling you further away which will make it harder to get help when you need/ want it? These are just thoughts and ideas to get you thinking about how you can care for ALL OF YOU throughout the journey.
Each day has opportunities for you to care for a different part of you.
If you are struggling with how to care for YOU, let me walk you through 7 actions that you can keep on a back burner for when you need help directing your self-care thoughts.
1- Positive thinking. I know this sounds gimmicky, but there is legitimate science to back up the importance and power of a positive mindset.
2- Eating. Again, this can sound simple but this isn’t about comfort food. This is about nutrient dense foods that fuel your body which will help ease the stress impact on your body, keep you healthy, and so much more.
3- Sleep. You NEED good sleep. You need even more good sleep when you are stressed. Your body takes such a beating on a journey like childhood cancer parenting that your body needs all the time it can get to repair itself. Turn off tech, diffuse soothing essential oils, stretch before you try to fall asleep.
4- Exercise. It doesn’t have to be CrossFit. I does have to be movement. A little spurt of something that gets your heart pumping and your lungs working.
5- Meditation. This takes practice and it is one of the things that will positively impact you the most. Getting control of your mind is a huge task with great benefits.
6- Community. Humans are social creatures and a cancer journey is a scenario that can easily pull us out and away from our community. Your community should be healthy, stable, strong… if you need to prune your community “garden”, so be it. Your thrivership is worth it.
7- Detox your environment. You cannot heal in a toxic environment. Whether it be people, actual chemical toxins, or emotional toxicity… you need to address that, clean it up, and replace with cleaner options.
CANCER PARENTS: Go easy on yourself. If you are in this cancer journey you know how all-consuming it can be. Sure, you find a “new normal” and learn to walk in that but then you must allow yourself the grace and space to grieve the previous normal you knew. You need to acknowledge that this is NOT the way you saw your child’s life going and really walk through those emotions. You need a safe place to talk about the ugly with people who “get it”. There is power and encouragement in simply knowing you are not alone. If you desire that kind of community, or know someone who needs it, please reach out to Reimaging Healing and let’s get you plugged in... >Contact/ Support Group< to find out more information.
YOU ARE NOT ALONE! YOU CAN DO THIS! I BELIEVE IN YOU!
COMMUNITY MEMBERS: You are so important to cancer parents. You have a unique opportunity to serve a drastically under-served population who needs you more than ever before! Do you have a skillset or product that you could use to bless the parent(s) of a child fighting cancer? If yes, would you be willing to bless them? Please connect with Reimagine Healing (>Contact/ Cancer Parent Supporter<) and let us know what you are willing to do to support these parents.
Published December 14, 2019 with Health Freedom Idaho.
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.
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.
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 one who suffer 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_.
You know how else these statistics change?
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.
Published November 12, 2019 with Health Freedom Idaho.
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.
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.
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?
I quickly realized how ill-equipped the medical system is for actually healing human bodies.
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.
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.
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.
Published October 6, 2019 with Health Freedom Idaho.
Founder and CEO of Reimagine Healing, wife, mother, researcher, freedom activist, holistic nutritionist, love of words.