Thursday, March 7, 2013Tonight's picture was taken in March of 2009. I purposefully selected this photo because it highlights my experience with cancer and food. When Mattie was being treated with surgeries, chemotherapy, and experimental immunotherapy treatments, balanced nutrition was IMPOSSIBLE! First of all I was rarely home and in my kitchen to cook. We practically lived at the hospital and therefore had little to NO control over what any of us were eating. But secondly, Mattie's battle changed his appetite, his sense of smell, and taste. So though the notion of healthy and well balanced nutrition are important considerations in cancer care, when you are in the thick of it, you as a parent realize that your child eating anything is far more vital than nothing at all. In this photo, Mattie was getting a bone scan. His bone scan took hours, and he had to be NPO for it (without food or drink for 12 hours). So as the scan was finishing, he was starving and began eating a donut while on the scanner. One of the foods he requested! Mattie's treatment left him emaciated. He couldn't tolerate most foods, and the only things he would pick on were: vanilla shakes ONLY, potato chips, chicken tenders, french fries, vanilla frosted donuts, and macaroni and cheese.
Quote of the day: Sometimes the best reaction is no reaction. ~ Unknown
Peter, myself, and our friend Denise went to visit a center today called Life Without Cancer. It is located in Fairfax, VA and the irony is we had to go to the conference in California to learn about this local resource. This center helps patients cope with the social and emotional aspects of cancer, through psycho-education, therapy, and social programs. I would say the majority of their cancer patients are adults, but they do have some pediatric patients. The beauty of this program is that it is offered free to participants. I will write more about this visit in the next day or so. However, tonight I turn to a different matter altogether.
You maybe asking yourself, why is Vicki rehashing what Mattie would eat and not eat?!!!! Well there is a reason!!!! Contrary to tonight's quote, I do believe sometimes a reaction is not only needed but required!!!! This is such a time.
This summer I learned about a program that has been introduced at Georgetown University Hospital. The program is called Cooking for Cancer. The program was started by a mom whose son has thankfully survived Hodgkin’s lymphoma. She has used her insights with her son's battle to help others. At the core I appreciate and value her passion. In addition, her program is also funded by Hyundai Hope on Wheels. Hyundai has been helping kids fight cancer since 1998. To date they have donated over $58 million dollars to innovative cancer research and programs. Certainly something to take notice of. Despite their generosity, Hyundai, like so many other organizations does not support the funding for bereavement programs, especially for parents who have lost a child to cancer. I know this first hand since I applied for such a grant. I have many thoughts regarding this which I do not plan on writing about on the blog, other than, this decision saddens me. I can't tell you how many clinicians I have spoken to lately who chat with me about their programs and then say..... "it is too bad in 2009, that you did not know about our bereavement support group that we offer at our facility, because by now you don't need it!!!!" Incredible, as if grief just magically disappears after three years. When clinicians are espousing this false knowledge, it is no wonder our society thinks grief work (especially the grief associated with the loss of a child) happens and is completed in a year!
Those of you who know me well, know two things about me. I like to eat and I also like to cook! So the title of the program cooking for cancer caught my attention, until I read the article. The mom who started the program, began cooking for her son when he was diagnosed at age 11 with cancer. Growing up in Europe, fresh foods and cooking were a part of her culture. When her son got sick, she could see that his appetite was affected but became inspired to cook up all sorts of healthy and nutritious foods to encourage him to eat and to bolster his immunity. She also pursued a master's degree in nutrition! Her son's physician stated, his "positive outcome can be attributed not only to the multidisciplinary team’s commitment to the treatment of childhood cancer, but to his mother’s tenacity with respect to his nutrition."
From a health stand point and from an outsider's standpoint, I most likely would embrace such a program. I get it in theory!!! But remember..... I am an insider. I lived in a hospital, saw what chemotherapy can and does do to a young body, and I also saw how cancer impacted our lives. I can assure you I could have been Julia Child and there still would have been nothing I could have concocted that Mattie would have eaten! There was no negotiating with Mattie and as a parent stuck and confined within a hospital I learned to pick my battles. I did not chose food to be one of those battles. But the issue I take with the whole tone of the article and statement is that a "positive outcome" occurred due to treatment and good "nutrition." I understand why the hospital is promoting such a program and I also appreciate the importance of good nutrition. Certainly I think that is vital for ALL of us and for children moving into the survivorship stages of their cancer battle, but I have to tell you as a parent who lost a child to cancer, all I feel when reading this and watching the Today Show clip below is a lot of judgment. I feel that in essence because I did not cook for Mattie and provide him with a balanced diet that he did not have a chance at a positive outcome. I of course know this is NOT true because we did everything possible to give Mattie a chance at survival. Multifocal Osteosarcoma was a death sentence and NO amount of nutrition would have prevented the final outcome!
I am certain it is not the intention of either this mom or the program to leave me with this feeling, but this is my reaction nonetheless. Not as a mental health professional, not as the co-founder of Mattie Miracle, but as Mattie's MOM. A mom who lost her only child to cancer. Words are powerful and words that our doctors say and use to promote certain programs can hurt and are taken to heart. I leave you below with the link to the article and to the Today Show clip promoting the program. A program which seems to be developing a national presence. Do pay attention to the children in the Today Show clip. These are NOT kids who look like Mattie, in treatment. But children who are in survivorship. For these children and their families, I have no doubt focusing on nutrition is key and that cooking healthy can be something that is vital for the whole family to participate in and learn about. But when programs are promoted one must never forget about those of us who lost children to cancer. Your messages are heard and absorbed by us too!!!! Chances are if you polled most moms whose children are in active treatment, you will find that nutrition and cooking a balanced diet are not on the top of their list. They may think about it, but there are many more pressing issues at hand and you are thankful for whatever your child is able to consume that day even if it is a french fry, ice cream, or any other trans fatty acid!
Cooking for Cancer: A Mother's Dedication to Nourish Her Child Helps Hundreds
http://www.georgetownuniversityhospital.org/body_dept.cfm?id=559097
Today Showhttp://www.today.com/id/26184891/vp/51081665#51081665
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