Bite-Proof

Starting out her b-day right!

Exactly one year ago today, Madeline and I sat in an exam room in Dr. Chad Mayer’s office, Comprehensive Food Allergy Clinic of Michigan, for her first day of OIT, Rush Day - she was given miniscule amounts of peanut flour, dust really, in juice. Every 20 minutes, Nurse Lety came in with more of the offending liquid and I sat nervously awaiting a symptom to appear. Maddy began OIT the day after her 7^th birthday with tears in her eyes from the anxiety that filled her, though she allowed her nerves to calm as it quickly became clear the little bit of peanut was not sending her to the hospital that day, or any day forward for that matter. Oral immunotherapy or peanut desensitization is a dream come true as far as we are concerned; the answer we had been looking for to solve our food allergy problem and today – our one year anniversary of the day Madeline began OIT - we celebrate this miracle!

In light of the most recent events to hit the news, I am extremely thankful that we found private practice OIT when we did. Natalie Giorgi, a young teenager, just 13 years old and anaphylactic to peanuts, lost her life after mistakenly eating a snack with peanut butter in it at a summer camp with her family - even after multiple doses of epinephrine were given. Multiple doses. The family reports that they were diligent about the peanut allergy even though Natalie had never had a severe reaction, just as many food allergy families are. Just as we were before OIT.

Enjoying the day!

This story has rocked the food allergy world. It’s rocked the world of anyone who has a food allergy plan because so many of us feel safe that our plan will get us out of a sticky situation if ever needed, which we hope beyond all hopes that we never do – I’m sure Natalie’s father, a doctor, felt the same. The epi is our security blanket and when we hear a story so devastating - it’s terrifying. Natalie’s story hits too close to home for those of us who have lived with food allergies, the possibilities sound all too familiar.  This could be our child – home or away from home. Parents of food allergy children need people to understand this is why we “hover,” – why we stay for birthday parties, why we call ahead to check each menu item, to look through ingredients lists, or bring our own food. Food allergy parents cannot simply drop off their child, let them gobble up cupcakes, candy, or even homemade fare. It may seem obsessive but a FA parent must be overly concerned with anything that comes into contact with their child’s hands or lips – toys, desks, baseball bats, especially food. To an outsider, it may seem overprotective, but to parents of children with food allergies, it just makes sense.

Madeline turned eight years old yesterday; today she celebrates one full year of OIT. Much like I imagine the Giorgi family did, we lived, we breathed, we slept food allergy. We were raising Maddy to be diligent, though, to ask questions about her food and, like Natalie, she had never had a severe reaction. Until OIT, we worried, we became anxious, and we fretted about “what could happen if.” And as she became older, we began to keep her from things just in case there was food involved or because we couldn’t be with her. In fact, next week, she will attend her first ever summer camp – without us. OIT allowed that to happen. Food allergies ran our life because we needed her to be safe. A world of possibility has opened for her – happier, healthier, and safer.

When peanut allergy desensitization entered into the picture – our picture - we felt safer almost immediately. As she progressed into the therapy, graduating from the program, and reaching the maintenance phase almost 6 months later, we never looked back – we didn't regret a moment. This was the best decision, our family could have ever made. This week’s news solidifies that decision in our minds. My heart is heavy for the Giorgi family and my prayers go out to them deeply. I can only imagine the grief they must be feeling. 

We really know how to party!

Numerous articles detail the horrific events surrounding the death of Natalie Giorgi and many try to analyze what went wrong, including varying anaphylaxis plans between allergists. While reading these, I can’t help but think about our last year and where we could be without OIT and the appreciation I have for our doctor, our supportive family and our friends. I was especially taken back to one Sunday in particular. As it turns out, I’m not very good with dates. It was a few months ago, though, well beyond our OIT graduation date - we’d relaxed well into a new routine of allowing Maddy to grab her own snacks or treats at church functions and more. After she was given the “all clear” from the good doc, she jumped right into eating anything she wanted, and asked us to stop reading labels from the get-go, and except peanuts and peanut butter, still her least favorite flavors, she was trying lots of new things! OIT suited us, especially our happy little Maddy!

So, when she walked over to me in the fellowship hall at church and said, “Mama, this is peanut butter, I don’t want it,” out of pure habit my heart immediately flip-flopped, dropped about two feet, and a slight panic rose in my chest when I saw the gigantic bite out of the large peanut butter cookie. The words tumbled out of my mouth as I tried calmly to look her over, “Are you ok? Does anything feel funny?” But my body relaxed when she said, “Yeah, I just don’t like it.” Phew. Bite-proof.

Thank you, OIT. Thank you, Dr. Mayer. One year ago, our story may have been very different. One year ago I may be like those of you also wondering - when? When do I give the epi-pen? When do I give Benadryl? When do I call the ambulance?

I am glad to have that anaphylaxis plan in place, but I understand that it is one thing to have that plan and those medications in hand and yet another to live through it in an emergency. I am thankful each day for this new life that OIT has allowed us. 

It is more than just bite-proof, more than cupcakes at a birthday party or new foods in our cupboards. It is beyond all of that; something immeasurable that words will never explain. And for that I am grateful. 

Gotta Have Faith

2009 Gooley Family

It is difficult to ignore when a child, teenager or most recently, an adult, is lost to a food allergy related accident and it hits the news. Events like these should be prevented one way or another through education, better training, or quicker response time - whatever the case may be. These incidents become lodged in your mind when your child or you yourself are anaphylactic to food allergies. Even now, since Maddy has become desensitized, even beyond ‘bite-proof,’ to peanuts when big news like an allergy related death breaks; I can’t help but think, “That could have been my child!” How fortunate we are to have found OIT and what a miracle it is that OIT has worked so well!

Every day since Maddy graduated from peanut OIT a little something special happens for us that makes us realize just how amazing this scientific miracle is and every day we count this as an extra special blessing in our life. This goes for our life with cancer. We count our blessing and we live on, everyday our faith growing greater – it has to when faced with these two beautiful miracles!

Not surprisingly, for the last number of years, our role in our church community has grown tremendously. Faith in our life has grown tremendously and we've grown with it. Our church came to us, almost literally, at a time when we needed it most, during Jason’s first bout with cancer and so, in return, we went to them. And they have been an incredible force in our lives.

Maddy & Hayden raise funds for pastor's sabbatical fund.

As a young adult, I didn't know what I believed or where I belonged. I had been raised in a different church than the one I attend now and my views, not so much strayed, but were challenged, as I entered adulthood. When we had Maddy we did not attend church unless we were attending a family function - I always felt that as long as I raised my own child well - to tell right from wrong, good from evil, modeled good decisions and goodness to other people - I would lead her down the right path. And I still don’t disagree with that; and certainly I would never disrespect anyone’s faith choice – as long as their moral & civil obligations hold up – but the community that we find at church is like no other. I never regret going, I love those we know there, and we've been very active members - participants in boards, helpful in Sunday school, we love the fellowship activities and do what we can when we can! The messages our pastor sends out to us always seems to hit home and we take those messages and to heart. 

When we first began attending church more regularly, when our family was first in need, Maddy was unable to eat at many of the coffee hours during fellowship following service due to her peanut allergy. Maddy was certainly the star of the Gooley show, though and was present regularly – her Grandma Linda and Nanny Lou, Jason’s Godmother, took her weekly to service in order to give me a break during chemo. Slowly, as we became more visible, more frequent attendees at church, Maddy’s presence and her peanut allergy became very well known. There was hardly a Sunday that Madeline couldn't eat at least something after service, even if it was only sliced fruit and cheese & crackers – every item checked and rechecked. There were some people that even sought us out to let us know that special preparations were made specifically for us, for her – the kitchen was washed, the utensils prepared, and all the ingredients were kindly checked, and often brought with them. What care they took.

Trunk or Treat - 2012 Gooley Family theme - Can you guess? 

As Jason is in his third round of chemo, and Maddy has completed OIT, our church continues to care for us. Each week, either one or two meals have been prepped for us. This time, though there is no concern for peanuts, no worry of cross-contamination and no bother that she will get ill from a peanut issue. It has been extremely helpful to have the help as Jason works extra hours the time he is not on chemo – he is an amazing man! When he is on chemo, he is ill for about six days straight. The man does not catch a break! 

We don’t just get coffee hour and meals from our fellow church members, though. As members of such a beautiful community, we have always belonged, always felt welcome - whether we can get there regularly or not. There are thoughts and prayers going in and out for us and people constantly asking about Jason and Maddy and lifting us up in their devotions. When I am there I am hardly left alone because everyone wants updates on my family - it is wonderful that everyone cares. We are a part of something special there.

2011 - Annual FCUCC baseball trip! 

 We have been battling this horrific disease, cancer, for four years now, and Maddy had been avoiding peanuts due to the threat of anaphylaxis for seven years before undergoing peanut desensitization treatment. In that time we'd spoken with so many folks in and out of church – face to face, on-line, and over the phone that use faith as a way to connect. It’s always both comforting and interesting. There are so many different perspectives on how faith carries a person through difficult times. I think I have the beginnings of a thesis! Every view, every word is delivered with good intentions – to make us each feel better - and it does, EVERY TIME. Every word of hope, prayer, and courage sent our way strengthens us and empowers us to keep living life positively. I thank you all for those words.

When life throws us lemons – we all hope God will throw us a miracle, but it helps to have wonderful people waiting with you!