My Hard Truth

“Dealing with Jacob’s cancer was less stressful, and easier, than dealing with his food allergies.”

Yup. I said that.   Yes, It is a strong statement.

But this is how I honestly feel. I am NOT saying that cancer is stress free or easy, or even preferential. Trust me, it isn’t!

What Cancer and Food Allergies have in common is that both nail you with the reality that your child may die. It’s just that with cancer, you are powerless to prevent it.  With food allergies,  you must be vigilant to a point of paranoia~ Every.  Single.  Day.

When a diagnosis of cancer happens, you are given books and handouts to read, you meet with a medical team to help guide you, doctors, nurses, social workers. When food allergies get diagnosed you are handed a list of foods and ingredients derived from that food to avoid, and a prescription for an epi-pen. You are sent out the door with less than a pat on the back and a “good luck” to face trying to find something safe to feed your child at the grocery store.

With a cancer diagnosis, there is stress, fear and anxiety.  The fears, and the unknown, as you enter the cancer journey: Getting the diagnosis, doing the research,  putting in a mediport so your child can get chemotherapy.  The chemotherapy itself, and what that does to a body!  The surgeries to remove tumors,  healing,  more chemotherapy,  radiation,  complications,  the “scanxiety” of waiting for MRI results.  With cancer, there are doctors and specialists, who already have a plan for curing, treating,  and fighting the disease.  They all help you navigate the  journey.  They are the ship’s captains, steering and guiding you through the storm, while you are merely a passenger.  There are follow-up tests and scans every 3 months, for years. There is new research, new medicines,  support groups, financial assistance,  as well as public acceptance and support.  Yes, children die from cancer. Children also die from anaphylaxis caused from food allergy reactions.

When you are dealing with food allergies, you must protect your child every single day.  Every meal,  every single social interaction, holiday,  birthday party,  restaurant,  special occasions, they are all risky! A visit to a friend’s home, a trip to the mall or the park, a barbecue,  can end in an accidental exposure to an allergen that could cause anaphylaxis or death.  Every  single  day poses a risk.  Even those well-meaning friends,  or family members, who forget about cross-contamination as they serve your child a safe sandwich for lunch using the same knife they used to cut their own PB & J, or mayonaise-ham-& cheese sandwich.

We face our fears everyday.  Is there Peanut butter on the grocery cart? The door handle? The playground equipment? Will a bully decide to shove a peanut butter sandwich in my child’s face at school today? Did the dog who just licked his face eat a PB milkbone? Will my child eat something that has been cross contaminated with his allergen? Will he know to speak up if he starts feeling ill? Will the Epi-pen be there when he needs it? Will someone recognize his reaction and know to use the pen? Will they know HOW to use it? Will it fail? Will the ambulance get there in time?

We try to ignore our “Future fears.”  Will my child always carry her Epi-pen?  We fear simple things like just letting them eat alone! An aspect of food allergies that I truly fear and loathe, is the ease in which a simple food can be used as a weapon by others.   We fear sending them to college, of them being reckless, or drunk and careless  about their safety, about what they eat, or who they kiss.  Will they kiss someone who ate nuts? For those of us with daughters, food allergies put them at increased risks for miscarriages.  Am I preparing them enough to  shop, to cook,  and to manage their food allergies?

And let’s not forget the “Mommy Guilt” that comes with food allergies.  Did I just poison my child?  Did I cause his allergies by nursing/not nursing/eating peanuts while pregnant/by feeding him solid food too young, or too late?  How did I not realize the ant traps, shampoo,  lotion, chapstick,  etc. contained milk, peanut, tree nut, egg, oats… How did I not recognize his allergies? Am I being paranoid? Or too over-protective? Am I doing enough to keep him safe?

When cancer strikes it is unexpected, leaving you reeling.  Food allergies can strike just as unexpectedly, to any food, at any time. Food allergies follow no rhyme or reason.  They may cause a mild reaction, just as likely as a severe one.  They change, with no set pattern,  a person can out-grow some foods, while adding new ones. You can be allergic to raw fruit, but able to eat cooked fruit. You can eat oats, but not gluten, or peanuts but not tree nuts.

Food allergies are EXPENSIVE! The cost of the specialty foods, the cost of the Epi-pens that must be replaced every year, the extra sets you must purchase for daycare, school, the in-laws, or ex-husband/wife.  The cost of the Ambulance and ER visit that occur every time an Epi-pen is used.  The extra time it takes to prepare everything from scratch, to bake safe cupcakes, bread, cookies, and meals. The planning that has to be done for every outing,  from checking menus, to packing safe foods.  We have trips to the allergists.  We try to soothe the child who doesn’t understand why he can’t eat the cookies,  donuts, or goldfish crackers that all the other kids are eating.   We don’t Trick-or-Treat, or do Easter egg hunts, or ice-cream socials.  We try to teach our children not to touch anything in the grocery store, not to take food from anyone before checking with us, to always carry their epi-pen, and to wear their medic alert bracelet.  

Life Threatening Food Allergies are a constant stress, because they can kill my child~ Just as certain as cancer can.

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About Multiplefoodallergyhelp~Jenny

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41 Responses to My Hard Truth

  1. hsw April 12, 2012 at 1:28 am #

    Powerful post – I think of what I took for granted envisioning my future life as a parent when I was pregnant. Just keep sharing and reaching out. Others “get” this and can help on those days where the guilt & worry start to get the advantage. (Hugs)

  2. Libby April 12, 2012 at 7:44 am #

    Great post. Am DM’ing you on the tweeter.

  3. dana April 12, 2012 at 9:44 am #

    I am in awe that you find the time to write so truthfully, so eloquently and so selflessly to inform/assist others thru your journey, when every minute of life is consumed with loving and caring for Jacob. This article absolutely took my breath away.

  4. Heather Preuss April 12, 2012 at 12:34 pm #

    Well written. You are not alone. I have a 19 year old daughter with severe multiple food allergies and asthma. You have put into words thoughts I have had for most of my daughter’s life. It is especially difficult as she is becoming more and more independent. I pray every day that she will not have a life threatening reaction.

    • Patricia Thomas April 18, 2012 at 12:11 am #

      Amen to that. I have 15year old daughter and no one other than those who have MFA’s has really understood why I seem to always hanging around in the background at every social gathering while she is growing up..It is a very fine line about them growing independence and keeping them safe.

  5. Tamara April 12, 2012 at 6:03 pm #

    Wow. And the people who just don’t get it make it so hard and dangerous for our babies!

  6. Crystal T. (@ewokmama) April 13, 2012 at 12:56 am #

    I get what you are saying. I’ve thought of your family often and thought that I’d rather deal with (curable) cancer instead of so many food allergies. There aren’t usually cures to allergies – there are only lifestyle changes and constant vigilance. With cancer like my son’s, there is an end in sight. We get through these three years and Jack can live a relatively normal life. Your kids will have to deal with these allergies probably for the rest of their lives and they are dangerous and even unpredictable. I’m sure it’s crazy-making! You are handling it all way better than I would!

  7. Wayne Hoff April 13, 2012 at 9:56 am #

    You can add to that the ironic stigma attached to food allergies – while victims of cancer receive a great deal of sympathy (and fittingly so), kids and parents of kids with food allergies asking questions about food usually get annoyed, dismissive, or indifferent reactions.

    • Multiplefoodallergyhelp~Jenny April 13, 2012 at 10:21 am #

      You have hit the nail on the head!!~ YES!~ And sadly often times it’s from the people obligated to care for our children; the daycare workers, school staff, at restaurants, or even extended family members.

  8. Lama April 13, 2012 at 4:34 pm #

    Jenny, this is a really profound post. Thank you so much for sharing. I am a doc and I have definitely seen both sides. You are right. Cancer is devastating but you get so much support from everyone around you including the medical community. Food allergies are so different and terrifying. I learned that the hard way when my son was diagnosed with multiple food allergies. I def agree with you on the “mommy guilt”. It is kind of relieving to know that other people feel that, too.

    I have started a company focused on finding food for people with food allergies. It was so difficult to find foods that the little one could eat that I thought, other people must be going through this, too. Would love your thoughts on it. Tasterie.com

  9. Stephanie Huber Gatewood April 13, 2012 at 4:56 pm #

    I don’t know. Managing food allergies (for us, it’s peanut/tree nut only, as far as we’re aware) is less daunting to me than a cancer diagnosis. Yes, managing a life-threatening food allergy is a burden and scary, but it doesn’t have to be limiting and, as long as we can avoid ingesting the allergen, I don’t have to watch my child suffer through agonizing treatments week after week, be chronically sick and fatigued, and worry that it won’t be cured or it’ll come back. I also have A LOT of hope that researchers will come up with a treatment or a cure for peanut allergies (please!) before my 5 yo son goes off to middle school. Right now I feel like I can deal OK with the kids’ food allergies: they listen well, understand the importance of following the rules, and are with me most of the time. I may feel differently when they start to spread their wings though.

    • Multiplefoodallergyhelp~Jenny April 13, 2012 at 7:21 pm #

      Please understand, I am speaking from my own experiences. We have been through and deal with both of these things. My 2 year old just finished chemotherapy. He had bilateral kidney cancer, he also has a genetic condition that puts him at a high risk of the cancer re-occurring. Cancer is horrible. No one in their right mind would choose one of these over the other- They both suck!~ Cancer is scary, cancer kills; but you know, a stupid little peanut can kill my children quicker than cancer- especially if the medicine they need to survive is not there when they need it! There is a constant vigilance required in keeping them safe. The constant worry, preparation, and precaution that we do every single day. Reading labels, going to multiple grocery stores to buy safe products, wiping down grocery carts, avoiding ‘fun’ kid establishments, holiday traditions, etc. because it isn’t worth risking a reaction. Maybe it isn’t that way for everyone; and if it isn’t for you, then you are blessed, but for me, I live every day with this constant undercurrent of stress involved with managing life threatening food allergies.

      • Kim May 9, 2012 at 11:32 pm #

        As the mother of four boys, two without any allergies, and two with multiple, life threatening allergies, I always thanked God that my children “only had food allergies” instead of some other horrible, life threatening disease. But at the same time, I secretly wished, hoped and prayed every single day, that they outgrew this “disease” (I sometimes wish it were called a food disease rather than an allergy, then maybe I wouldn’t feel like I had to “secretly” pray for my own babies.) I personally can accept the burden of managing every single bite they take, but I wish, hope and pray that they not endure the stress involved with managing every circumstance, bite and the constant vigilance needed to keep themselves safe. God bless your son, and I wish him a healthy, cancer and allergy free life.

  10. Katie Pritchard April 14, 2012 at 4:01 pm #

    Jenny, I’ve been meaning to read this all week- I’ve seen lots of people post it and have been wanting to see what you wrote. I loved it and it broke my heart all at the same time. I understand that you aren’t choosing one of these conditions over the other. Last summer, seemingly out of the blue, my four year old daughter developed a severe allergy to eggs and we also discovered the peanut allergy we knew she had since she was a year old (but didn’t really know anything about) was equally as severe. She had also developed allergies to soy, sesame, peas, and apples. It turned our whole world upside down overnight. I was just telling another mother of children without food allergies this week that I still feel, 10 months later, that this isn’t real, that I’m living in some kind of alternate universe. I’m anxious and afraid a lot of the time, and I’m trying to cope with that in healthy ways, but I’m still learning. Thank you for being so honest. I think your honesty will help a lot of other food allergy parents out their to admit their feelings and maybe heal a little.

  11. nosupermama April 15, 2012 at 1:12 am #

    Thank you for this post Jenny. Caring for parents with cancer (losing one) and caring for my kids with food allergies, the later certainly lacks the sympathy and understanding from those who aren’t faced with it day-to-day. Your site provides excellent information and support so many FA people/parents need. Thank you. You are the best mom to your boys 🙂 I hope others reading this post/site, who don’t live with food allergies, have some understanding as to how we live, manage, provide safety and some normalcy to our little ones lives.

  12. sylvia April 15, 2012 at 8:45 pm #

    Isn’t is sad that people are shaken when that find out a child has cancer, but not with food allergies. I think it has so much to do with people not understanding what a life threatening thing a food allergy is. They understand when you talk about chemo. and radiation, but not about glutens, nuts, eggs, and dairy products.

  13. Michelle Kazukaitis April 17, 2012 at 5:24 am #

    Thanks for your candor! That was a really insightful and hearfelt post, demonstrating how hard it is to care for a child with severe food allergies. Thanks for sharing your experience. Michelle and Pauline of http://www.theallergymenu.com

  14. suzie April 17, 2012 at 6:34 pm #

    Thankyou for writing this. You have just described my life for the past 6 years. You will never know just how much you have done for me just by sharing these thoughts. Thankyou!

  15. Joanne April 17, 2012 at 6:37 pm #

    Thankyou for sharing your real and raw experiences! My son is only 3 and suffered 4 life threatening reactions. We nearly lost him on Christmas day.

    I have shared your article on my Facebook support page for allergies and anaphylaxis.
    http://www.facebook.com/aanaphylaxisaustralia

    Bless you and your family xoxo

    • Multiplefoodallergyhelp~Jenny April 17, 2012 at 7:18 pm #

      Oh My goodness! Thank God he is ok! Thank you so much for sharing my post with your followers! I am moved to my core the way so many of you have responded to this piece. It is reassuring to have all these thoughts and feelings validated. Bless you too! Sincerely, ~Jenny

  16. Tanya Elliott April 17, 2012 at 7:44 pm #

    This is our life, word for word. It’s so painful and
    I feel that others that don’t live with it just don’t understand what we go through. To keep our kids safe. To hear someone else explain how I feel , I now know I’m not overreacting. I just want to keep him safe.

  17. Amazing article April 17, 2012 at 11:07 pm #

    My daughter has been anaphylactic to egg, nuts and dairy since she was a baby. She is now nearly 15. i have read many articles over the years but this one is by far the best I have read. Thankyou for sharing it. It is amazing and I will definitely share it with others in the hope they will get out of it just a little bit of what I got!

  18. Allerchic April 18, 2012 at 12:41 am #

    Great Story we shared on our page. Allerchic – For eczema, asthma & allergies.

  19. kelly April 21, 2012 at 12:11 pm #

    Great article. Have you thought of making your own holiday traditions. You can let him hunt for eggs and trick or treat with stuff you make. Have allergy free playdates at your house. So much you can still do to enjoy the most out of life. The next would be prayer and let God have your worries. You’re doing the best you can and anxiety can really take a toll on a person. Hugs and sorry for your situation.

    • Multiplefoodallergyhelp~Jenny April 21, 2012 at 1:22 pm #

      Hi Kelly, Thank you for your comments! We actually DO make our own traditions and a lot of other accommodations. We have to! But there are a lot of things we can not do, or won’t because the risks are too great, or too unknown!~ Such as going to a restaurant to eat; something we can not do with all the allergens my boys have, unless I pack and bring our own food! My favorite Mother Teresa quote comes to mind!~ “I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.” ~Jenny

  20. De Taylor April 23, 2012 at 7:28 pm #

    Yes, I have loathed myself for it…. but nevertheless in my deepest/darkest moments I have envied that mom who found out her child had cancer, simply because they will have support- from the medical community, friends, family and strangers…everyone GETS cancer. Those of us w/ food allergy kids will receive isolation, implications that we are crazy or over-protective, spite and scorn because our kid is the reason the World’s kid can’t have a cupcake in the classroom 30 times a year, and we’ll lose even family members, who do not wish to change their lifestyle. Food is more important than people to most- you need only develop an allergy to see it. Of course not in a million yrs would I wish my child or anyone else’s to have cancer, but there are times when it does feel like it would be easier. Thank you for letting me ease the loathing, just a tiny bit.

  21. Shelly April 24, 2012 at 7:54 am #

    Awesome post. My child has cystic fibrosis and many, many food allergies. I, too, find myself still overwhelmed with the food allergies but definitely have a good “groove” going managing his cystic fibrosis. Crazy, crazy isn’t it. I wouldn’t wish either diagnosis on anyone but the world does judge harshly the decision parents must make regarding allergies. Your write beautifully…..thank you.

    Shelly

  22. Jennifer April 28, 2012 at 5:58 am #

    I can’t imagine the feelings associated with having a child diagnosed with cancer, but I completely understand what you are saying about the food allergies. It is nice to know I am not alone in this struggle. Thank you for taking the time to acknowledge how hard food allergies can be and for lifting up the rest of us.

  23. Emily May 21, 2012 at 10:57 am #

    Emily The prejudice against food allergies continues as an adult. I had to leave a job because strawberries, to which I am airborne anaphylactic, were served at a small strategic planning meeting because they thought I was just being a princess about it. I was the CEO of the company at the time and the board organized the meeting! Sad

  24. Grace September 25, 2012 at 1:09 am #

    Wow, what a powerful post. We have a 3 year old and a 3 month old, and it now looks like our little bub is going down a similar track to his oldest brother of multiple food anaphylaxis. Thank you for putting these feelings into words – the enormity and burden of it all is hard to comprehend. For you to have undergone the burden of cancer as well as allergies – your survival is testimony of your courage and commitment to your children. After your most recent testing, you must feel that so many roads have now been closed to you, with so few options left. You have not been defeated – whatever path you chose next (if you could call it a choice)- know that you are not alone.

    • Multiple Food Allergy Help September 25, 2012 at 12:06 pm #

      Thank you so much for your kind words! [I am actually teary eyed!] Best of luck to you and your boys!~Jenny

      • Grace - Allergy fun September 25, 2012 at 1:26 pm #

        Thanks Jenny, I forgot to mention that I’ve got a blog going too, if you would like to read of our adventures… I haven’t worked out how to write about our current challenges yet though… http://www.allergyfun.blogspot.com. (Sometimes tears are a wonderful thing 🙂

  25. katie October 8, 2012 at 5:40 am #

    thank you for your honesty. I have a son with multiple food allergies. Its so hard.

  26. Lily Brown October 21, 2012 at 2:34 pm #

    I’m late on this post but I read it now. OH YEAH!!! when I was told I have cancer I got a ton of help from ppl. as soon as doctors ruled out cancer these ppl were nowhere to be found!! And now when I need help with this I guess I had to come to social networking to meet a bunch of nice supportive people going thru the same. At one point I said I would rather have cancer than all this since then u got more help & ppl were more understanding. it ws harder for me to face fact that I have disease that is not curable & this is my new life. where cancer, u treat with chemo/radiation & eventually its history. Hope they’ll find a cure to this one day too & it will be history!
    Keep going Jenny!

  27. Barbara February 18, 2013 at 8:12 pm #

    Jenny, you have described my world. I have a 14 month old baby who has a long and expanding list of allergies. I feel the only people in our court are my closest family and fellow parents of allergic children. Thank you so much.

  28. Colleen October 21, 2013 at 3:42 pm #

    WOW! You said everything that I feel each and everyday with my two children. My youngest is only 15 months old and is allergic to – milk, wheat, egg, oat, banana, apple, peaches, prunes, outdoors, cats/dogs, etc. My oldest is four and is allergic to tree nuts and peanuts. We have had to use the Epi Pen four times to save our children’s lives. I live in fear each and everyday. I couldn’t live without my babies. Not only am I always afraid of the worst happening to them, but financially we are struggling due to medical bills and cost of food.
    All I know is that I’m so blessed for my family and each and everyday we have together.

  29. Gina Stinnett August 17, 2016 at 3:28 am #

    Word for word, I read, and it feels like I am reading my own thoughts. My daughter was dx with cancer; Wilms Stage II. A few months after completing 22 rounds of chemo/Dactinomyocin and Vincristine, she had a reaction to peanut butter. The visit to the allergist confirmed intolerance(s) to peanuts, tree nuts, eggs and a slight intolerance to milk and corn(have to monitor those for possible future reaction). Hoping she may outgrow what she was never allergic to prior to chemo…6 years later, she has yet to outgrow these. So, we have replaced her Broviac emergency kit, with Benedryl and 2 Epi-Pens in my purse. Note the 2 Epi-Pens…you need to carry a back up in case of pen failure. Also, in case your are unfamiliar with FARE, it is an amazing tool for allergy sufferers; national listserv, articles, coupons for Epi-Pens… Lastly, thank you for writing this post, a sigh of relief that my guilt of feeling like I am playing Russian Roulette with my daughter everytime I feed her is shared by others.

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