Food & Supplements - Information for other AT/RT and cancer patients

So many have asked what exactly we feed Elan...   If you are just starting this journey and searched "AT/RT blogs" I hope this is some help and can save you some time!  The first part is his food and the second are his supplements.

First off, I spent hours researching Anti Cancer foods and was BEYOND overwhelmed.  One food was good according to one source, another site/ book it is bad etc.  So I ended up going to a to a Traditional Chinese Medicine herbalist/chiropractor/nutritionist here in town to get assistance as to the best diet and to get him on whole food supplements which are hard to find.  This was the first week he was released from the hospital back in March/April 2012.  Thankfully we eat quite healthy so it wasn't a huge change for grocery shopping.

Since he has a Mickey or in other words, "a hole in his stomach" we can literally push food into with a syringe, we can give him exactly what we want for the most part.  Of course he is now eating by mouth as well, which makes things more challenging as most 2 year old love crackers (of course not the gluten free variety), milk (not on diet) and basically anything else not on his diet.  We try our absolute best to stick completely to the diet.  We are quite strict about the dairy and gluten as his right eye gets red and then cloudy if he has it so a double whammy.  We try our best to do gluten free, sugar free (and not any substitutes either), hormone free, organic free range etc. 

The best reference we found but did modify a bit was Anti Cancer: A new way of life

Author:

Servan-Schreiber, David

ISBN:

9780670021642

Honestly, this is really how all of us should eat.


Here is the ideal diet per multiple sources and seems to be working:

No gluten (wheat)
No sugar
No dairy (no cow but goat OK)
No processed foods at all
No soy

no peanuts (he eats sunflower butter as if it was a food group though)

All organic, free range, pesticide free "hippy dippy" foods. We do give him beef but organic, free range etc.  It is good for his iron as well as brain to rebuild synapses.

What do we normally put in his feeding tube food?  As I mentioned in an earlier blog, the nutritionists all wanted us to give Elan Pediasure which we felt wasn't for us as all it has in it is chemicals.  We turned this down and asked for a whole food alternative (notice I had to ask, not given options).  They then gave us a brand called Complete.  The 2nd ingredient was high fructose corn syrup.  Even if you don't believe that sugar feeds cancer why chance it, right?  I can guarentee if any oncologist or nutritionist had their kid get cancer they wouldn't feed them Pediasure.

I have always been interested in food and eating right.  It was pretty much a done deal when there wasn't another alternative that we would just make his food.  It is sad that cancer kids are not given healthy alternatives by the medical community - they do exist but insurance doesn't cover :(.  One brand we have used is Juvo.  

we put a variety of the following almost every time:

FOOD:

Beets, kale, spinach, green beans, broccoli, mint, garlic, onions, bok choy, cauliflower, Brussels sprouts, cabbage, sweet potatoes, raspberries, blueberries, cranberries, quinua, lentils chicken, beef, eggs, flax seed, and for the liquid we use hemp milk (higher calories) and his Brain tea from the Traditional Chinese Medicine doctor (see below)

What he eats by mouth (he didn't eat anything at first when we left the hospital but now he eats the following things as of today):

 sunflower butter by the jar!, bananas, apple slices, gluten free cereals, gluten free foods we make our selves many muffins etc that kids like as trying to do preservative free, goat milk but only 1 cup a day but we water it down so he can have more, goat cheese slices from Trader Joes, carrots (of course only with us watching him as a hawk), goat milk based yogurt, and he LOVES hot dogs - organic, grass fed etc.  

So by "we" I mean my mother Lolly lately.  She has been so helpful!  She made a ton of it and put in canning Ball jars so we could freeze them and have several weeks made up and just grab one at night for it to be ready in the morning.  We then heat it up in a ceramic container (we can't us metal as it apparetly interferes with his Brain Tea from Dr Guo.

homemade gluten free muffins one he really likes right now to give you an idea.

http://peasandthankyou.com/2012/08/29/morning-glory-muffins/

We also have a water filter system with its own faucet on our kitchen sink.  I wouldn't buy the one we have but I suggest going to Lowes or Home Depot to get one - they run around $160 but good to filter stuff out anyway. Reverse osmosis systems take out good minerals so we opted for just a good filter system.  I was WAY overwhelmed by all the cancer sites that have filter systems for thousands of dollars but the integrative doctors, chiropractors and TCM all say just get a system that takes out junk and we can only do so much.

how we heat up his food (supplements added in)

Freezer with food.  About 1 jar a day.

SUPPLEMENTS:

I found out almost all you can buy at a Whole Foods type store are really not 100% whole foods based.  the day Elan was released from the hospital Erik and I went to EarthFare (like Whole Foods) and spend hundreds on supplements only to find out that most had syntetics and were not 100% food based.  Apparently companies can claim whole food but it only needs to be 10% to be labeled whole food.  We found you really need to research to find a true 100% whole food based suppliments.  We are using Standard Process and Medi Herbs right now.  He hasn't had any stomach issues etc.  He used all of them even during radiation as they said as they are food based not to worry. We went this route at first because we knew they were good quality and we needed real direction by someone properly trained (ie not a $10 per hr person at a organic store).  Here is who we go to here in town: http://www.synergycharlotte.com/index.html

Below is what he takes right now.  We started with just the herbs/suppliments from Synergy here in town but the cancer continued to grow so we know we need more than just that.  We had him doing just the suppliments up until May 30th when he started Proton Beam Therapy in Indiana.   

BTW - We didn't know that you could just call as parents to refer your child to Proton Beam radiation but you can!  THis site is new and a great resource.  Wish it was all here when we were researching back in Feb 2012!  Dr. Douglas was ELan's main doctor but Dr. Buchsbaum is also a pediatric doctor there:

http://iuhealthprotontherapy.org/what-is-proton-therapy/?gclid=CPvJ_7f_x7QCFRQcnAoddjAApA

We then went to a Tradional Chinese Doctor in Chicago our first weekend when we were in Indiana as we knew a few brain tumor adults that had success with him.  His name is Dr. Guo and he is a trained oncologist in China but doesn't practice oncology in the states.  Of course in true stereotypical chinese doctor style he told us we were killing our child with radiation so be prepared for that if you go to him!  However, we do feel the tea is doing something for Elan so worth a shot!  He is respected by many in the field and if you are going to pursue TCM (traditional chinese medicine) and are in Indiana worth 4 hour drive for a visit.  It is a real chinese place so be prepared to have to ask all to repeat themselves a few times :)

http://www.liferising.com/

He looked at Elan and gave us his "ACE brain tea" which is a boil tea.  There are specific directions you have to use to boil the tea including a non medal pot (really hard to find but the way! We ended up spending $40 for a ceramic one when in bloomington!)

Fortuately Elan is small so we use one tea packet for 3 days and it is around $7 per tea packet.  He also gave us a few other things too which we still give him. 

THe other thing we give Elan which we were worried about and stopped but have him back on it is B17.  He did 3 months of 1000 MG and now on 500 MG "maintenance"  honestly he had no issues with stomach etc.  If he did we would stop. We get it through here:

http://www.laetrilesupply.com/cgi-bin/MyStore/perlshop.cgi

How we cook his food

The $40 tea pot for Dr. Guo's tea

Step by step how we make his supplements - we mix them all 1 time each week on Sunday night:

1.  Put kids to bed...
2.

a glass of wine :)!

what he takes right now.

put in a bullet (we have an off brand one and it works great!)

and keep in a drawer.  One in AM food and one in PM food.