After Anthony was diagnosed with Medulloblastoma I began an endless journey of research. There is so much to possibly learn and know to be able to understand what is going on and even more so know how to deal with it. Essentially, the ultimate goal was how to thrive through cancer. I had come across posts of “Liquid Hope” and “Nourish” formulas on a Medulloblastoma parent support group but didn’t look into it further since Anthony was not being tube fed at the time. I had also read that most people had to end up paying out of pocket for the formula, as it wasn’t covered by insurance. Fast forward to 9 months after Anthony was diagnosed and we now found ourselves needing a NG (nasogastric) tube to be inserted. Along with the order from the physician to have it inserted because Anthony had lost significant amount of weight, came the order from the dietician for the formula that Anthony would be put on based on RDA requirements: the average daily level of intake sufficient to meet the nutrient requirements. We were never given a choice of formulas we could give Anthony, just told which one he would be put on and then went through the motions of having the supplier contact us for delivery.
One random day, 2 months after Anthony had his NG tube inserted, one of the parents in the support group posted that her son had completed his cancer treatment and she still had a box left over of the Nourish formula. She stated that she would be willing to ship it to anyone who could cover the costs of shipping alone. I responded as fast as my fingers could type and took her up on the offer. After receiving the box I slowly incorporated the Nourish formula with his formula by replacing one of the cartons. Then after a couple of days kept incorporating more of the Nourish, until I fully switched over to the Nourish alone. Within a week I noticed Anthony was suddenly able to tolerate his continuous feeding at a higher rate, was not vomiting it out as he usually almost would daily and his bowel movements were now normal. He had been battling between episodes of constipation and diarrhea which required the use of a combination of stool softeners or laxatives. His energy levels also seemed to improve. Of course this could be all coincidence but to go from a formula where we could not pronounce all of the ingredients to an organic whole food formula was amazing! Its bad enough that Anthony gets so many chemicals pumped into him with chemo, why add to it when we could nourish it as well. After all, food is an integral and huge part of healing.
Once we informed Anthony’s dietician of the change, she mentioned she had heard of the formula but it wasn’t something she really offered to families since its often not covered by insurance. If you were to purchase each pouch of organic formula it’s about $12.50, which Anthony would need four pouches a day in order to meet his calorie requirements. That would mean a monthly cost of $1,500 alone. But guess what?! To her amazement and ours, the insurance covered it 100%! I wish I would have remembered at the time when Anthony had his NG tube inserted about looking into Nourish as a possible option. But with another thing added to our “normal” daily life, I honestly forgot about it. Thank God for this random mother in Boston who was so generous enough to share her son’s leftover formula.
During the month of December 2018, Functional Formularies was doing a Facebook giveaway which I entered to win. I received the package which contained an entire case of Nourish formula, a tote bag and the book written by the creator of Nourish and Liquid Hope (their other formula), “A Turn for the Worst: Traumatic Brain Injury and a Daughter’s Search for Answers“. I started reading it as soon as I got it and could not put it down, to the point that I finished reading it in one sitting! Robin Gentry McGee tells the story of her father who suffered a traumatic brain injury and her journey through the experience with Western medicine which led her to create an organic whole food formula for him since he was tube fed. Such a great book and highly recommend it, of course along with the formula! So thankful for Robin for creating such a great formula and Functional Formularies for choosing me as a winner! This has all been so life changing!
I say it often, but I can’t stress it enough, I urge you to always take the time to read/do your own research, get second opinions, ask questions, seek advice from others in the same situation as you are in and never settle for the first information you are given. You are your own and your child’s best advocate!
If you are interested in learning more please visit their website directly at: https://www.functionalformularies.com/
Click on picture to be redirected to link to purchase book!