There are a million and one different ways to help support your child’s body while experiencing Leukemia. Ranging from fleeing to Mexico and finding a holistic cancer clinic to indulging on hospital cafeteria milkshakes at every appointment, the choices are vast. You can also spend hours, upon hours, (upon hours) reading the literature on the pros and cons of all of it.
Trust me, I have.
And I don’t think that’s wasted time. I think it helps line up the freight train of childhood cancer with the paralysis that is being the parent of a cancer kid. When you spend 3 hours searching the web for hats that your soon-to-be bald child can wear, even though in the end, he won’t end up using them, it is easy to reflect what a waste of time all that research was. It wasn’t. In the sacred space of adjusting to your child’s cancer diagnosis, nothing is wasted.
And still, we can become so inundated with choices that it is hard to make even the smallest decisions. For example, “What do I feed my kid for lunch, and does it matter?”
Here are the decisions we made for our family regarding nutrition.
There is no kick in the pants to your diet idols like the kick in the pants of childhood cancer. I never thought a good diet would keep him from cancer, explicitly.
I mean, sheer statistics would keep him from it, right? How could that ever happen to us?
But once it did, needless to say, my approach to diet was thrown for a loop (as was everything else, bc once your kid has cancer, it takes months (years?) to figure out what you actually believe). We had done everything, paleo, GAPS diet, organic, homemade, slow-cooked, etc. and here we were. WHAT DID IT MATTER!!!! I knew despite my confusion, that diet was important, but it felt like a real blow.
Alas, we tried to stay true to the basics of nutrition, while also realizing that the only way we were going to get through it all was with copious amounts of frozen pizza.
Focus on raw fruits and raw vegetables, especially during the first month of steroids. Our guideline was, he could have as many helpings of chips, bread, crackers, etc. as he wanted, but each serving had to be couched with a plate of raw produce.’ This worked pretty well for us to curb his insatiable appetite and also, most importantly, to keep his gut motility up and his blood sugar stable.
Beau also craved salty things while on steroids, so we made sure to have ample supplies of healthy options on hand. We chose brands that were organic and full of live probiotics, like Bubbies and Ozuke sauerkraut and pickles. Also, homemade popcorn, cooked in coconut oil, drizzled with olive oil and sprinkled with Redmond popcorn salt. Done. So delicious, and full of healthy fats and trace minerals.
During steroids we would also push hard on potassium, as it is directly linked to muscle atrophy and cramping. We’d aim for high potassium foods, but also supplement if necessary.
All of treatment, but induction specifically, is a tough time to draw hard lines around food. You are so emotionally wrecked over things and you just want to give you kid any and everything they ask for. Thankfully, we already had a family culture that promoted a lot of this food. Do what you can, offer it all, hold the line when possible, and then, grace, grace, grace.
Probiotics are hot topic when the patient is neutropenic, so you’ll have to navigate that decision for yourself. We chose not to supplement with probiotics any time Beau was neutropenic, but to allow him to eat whatever probiotic-rich food he craved- kiefers, sauerkraut, pickles, yogurts, etc. When he he was not neutropenic, we used Flourish probiotics. Post-treatment, we started to alternate probiotics to get a variety of useful strains. Some other brands that are useful are Klaire Labs, Ther-Biotic Complete Probiotic, or anything by Pure Encapsulations or Ortho-Molecular. Don’t bother with what is available in the grocery store- they are usually useless- work with a practitioner.
Bowel movements are a great form of detox. Ensuring a fiber-rich diet is key during all of treatment because regular bowel movements help overall comfort, but also ensure that dead and dying cells and chemotherapy left-overs are moving through your body and spending no more time than necessary up in there. During any phase of treatment that included the chemotherapy Vincristine, known for the havoc is wreaks on many bodily systems, but specifically the gut, we had Beaudin drink a cup of Smooth Move tea, or similar, every 1-2 days.
Another key to bowel motility is hydration. We used Ultima Electrolytes, to keep Beau drinking and also ensure that electrolytes and traces minerals were not depleted by plain water.
If your child does get stopped up, they can end up in a great deal of pain and on a lot of pharmaceutical meds to get things moving again.
*Variety & Balance*
Days after diagnosis we attended the New Cancer Family orientation at the hospital. During the class, the nurse explained that ‘it didn’t matter at all what Beaudin eats, as long as he got calories.’ That even if he ate mac & cheese for 6 months straight, that was fine. I knew then that we would have to agree to disagree. But her approach, that nothing mattered, did help release me from the panic that everything did.
I mean, Betsy, 6 months of mac & cheese straight is permitable by these people.
Enjoy the luxury of a damn gluten-free, organic frozen pizza!
We try to offer a variety of fruits and veggies. You can always find berries (yes, even when neutropenic), bananas, pears, oranges, apples, carrots, bell peppers, celery, English cucumbers, snap peas, in our fridge. You can also, at times, find us in the Chik-fil-a drive through. Balance.
Throughout treatment Beaudin has gone in and out of craving or being fully against certain foods. For example, red meat and eggs. We try to just ride the waves with this, believing that his body will crave, generally, what is needed. It is hard because somedays I think that I crave three cups of coffee and a Starbucks Morning Bun- so it’s not to say that all cravings serve you. But alas, I think a child’s body speaks more authentically in what it needs. So there are weeks where he eats meat and weeks where he doesn’t.
*Sugar & Caffeine*
The naturopathic oncologist that we consulted with in Arizona shared research that consuming sugar and caffeine before and shortly after chemotherapy helps to kill off more weak, power hungry cells. Cancer cells, stupid as shit, but prolific, are more active when boosted by sugar and caffeine and, as such, the chemotherapy finds them first. So, we ate wicked healthy 75% of the time, and enjoyed mocha milkshakes before and ice cream after most chemo appointments. After being so strict with diet before cancer, during treatment we indulged in the simplest of all pleasures: Cheez-Its.
This balance was key, because it allowed us have a special treat on days that were harder than normal. eating up to cancer we were so dang healthy, and in some ways it felt like that got us no where- which isn’t true, but there was a TON of work poured in to an outcome the was pediatric cancer. It was, well, still is, hard to make sense of. But knowing that even a flawless diet couldn’t keep cancer away, allowed us to move into a more balanced space where we focus on nutrition and deeply enjoyed treats.
*Nutrition and toxic load*
Everyone’s body is different, and everyone’s beliefs on the toxic loads of pharmaceuticals is different. How I operate is that if I can prevent his kidneys and liver from having to filter out a prophylactic pharmaceutical by feeding him fresh produce, limited processed carbs, and pushing lots of clean, filtered water…. then lovely, it’s once less med he has to deal with.
Is it harder to prep fresh produce than just hand him a bag of chips, yes? Is it harder to explain, on repeat, that we are choosing differently because we believe differently, yes. But it’s hard and worthy, as are all of the best things. And to be fair, our kids are used to sauerkraut juice for breakfast, raw veggies for snacks, and turning down food-coloring cupcakes, so for us, there wasn’t a huge amount of resistance. Saying, “We are going to make a choice that fuels our bodies really well,” is understood.
Who knows what actual difference nutrition makes!
What I do know is that by focusing on a well-balanced diet, Beaudin hasn’t needed to take any of the anti-fungal medication, heartburn medication, nausea medication, nor stool softeners- all meds that are prescribed prophylactically to patients because the doctors are “sure” you will need them. That is 4 different meds that we have declined without consequence to his comfort!
He has maintained a healthy weight and has not struggled with the low blood sugar levels that can be a side effect of the daily chemo, 6MP, he is on for Maintenance Therapy. He has only had one chemo hold, the week following Delayed Intensification, and has only visited the ER once for a fever, a fever which resolved within 4 hours and left me wondering why I took him in the first place.
What I do know is that teaching your kid to choose healthy, nutritious food is a beautiful thing, allowing them to indulge in creature comforts like chocolate milkshakes is honorable, and having grace and space for the multi-million food choices in-between is imperative.
Comment below if you have other questions about how we’ve approached diet/nutrition. I’d love to know your thoughts!
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4 thoughts on “Integrative Choices: Nutrition”
What a beautiful article, reflecting on food choices in this journey! Betsy, you are doing heroic work and loving your kids so well in the season.
We are trying to change her diet to a more whole food approach, but I struggle with getting her to eat healthy foods she does not like. We did have a pretty decent list of foods she would tolerate that are healthy, but that list has shrunk and I find myself running out of choices. Smoothies are great to add extra veggies like spinach and kale but she’s even getting tired of smoothies. Any tips to get kids to eat food they don’t like because they need the nutrients. I must add she has been very good at rejecting anything I say is not good for her and we have not had to take Zofran etc as well I strongly believe it’s because she eats healthy, but im lost as to how to add foods she doesn’t like.
Elizabeth, thank you so much for your comment. Feeding kids is so hard to being with, add cancer, and , well, you ARE running out of choices. A couple things I would share. We always thought Beau wasn’t nauseous bc he wasn’t complaining about it and/or actively throwing up. However he also was never hungry and nothing ever sounded good to him. We were so hell ent on limiting meds, that I saw all this as just side effects, when in hindsight I think he was actually nauseous. I wish we had figured out the nausea things (even maybe with CBD, marajuana) so that we could have circumvented the “I’m not hungry” thing. Second thing- I would hold loosely on all the things-one thing we realized, and I wish we had sooner, is the healthy wholeness is only partially from healthy food, its also from comfort, stability, feeling like they have a choice and can say no to the damn smoothie, relaxing. Have her cook with you even if she eats nothing. Have her grocery shop with you even if she doesnt eat it. This is the longest shortest season and so though you want her to stay healthy, you also want her to have a whole approach to food.She will regain her tastebuds, and in the meantime you will have created a holistic approach to food as nourishment. Then practically, a couple things that helped us: Sauerkraut, sautéed spinach with apple cider vinegar, all the organic hot dogs he wanted (compromise!), so much popcorn with olive oil and sea salt, organic frozen pizza (compromise!)- see the trend. We still have trouble with getting Beau to eat enough and just the other day I was thinking I need to look in to an appetite stimulant (I’d likely go more natural with a marajuana option than pharmaceutical) bc it IS really hard to eat when you don’t feel hungry. Best of luck to you, hold loosely to all the things, you are doing a great job! xx
oh, one other encouragement. We did have a lot of open conversations about how the body works and how it needs “clean fuel” to process the toxic chemo. This helps us get him on board with a plate of raw veg being left out and that being his snack option (honestly though he weirdly enjoys raw veggies.) Speaking openly and directly (age appropriate) about how we want to nourish our bodies s important to get our kids buy-in. I am not sure how old your daughter is and know this can be tough depending on age. One book we got and read for context and to use as a basis for our vocabulary was this book: https://amzn.to/3M9vkIW. We would also just set hard limits about what had to be consumed, “Sounds great, you’d like an ice cream, yes. You will have to fill up on some ‘growing foods’ (another term we use) so let me know if you’d like sauerkraut and hotdogs or some steamed edamame (with olive oil and real salt).” They have agency, but we have the final decision. ❤