Graduation Day!

1st bite... lots more to go!

When it comes to our peanut desensitization journey, I have to say, our story is fairly boring. In the case of OIT and food allergies, though, boring is exciting! Thrilling, actually! It is exactly what you want traveling back and forth to the allergist week to week. You want to know you will be walking out of the office an hour after you feed your child their little bit of poison with no further symptoms, no worries, no complaints. Right on track towards graduation – toward success!

Boring in the world of OIT means we were lucky. Very lucky. Every step of the way. And don’t think we didn’t know it. Every step of the way. Maddy was rarely sick, her body adapted to the dose well, and best of all she had no severe reactions. From the start, Maddy didn’t have to skip a single dose increase – every single week for virtually six months we made our near 85 mile trek to Dr. Mayer’s office to see the ‘ Peanuts Gang.’ Considering some of what this family has gone through in the past years, it was exciting to see this happen so quickly and painlessly. Maddy deserved that - to have something so great in her life go so well. This was a blessing for us – score one for the Gooleys! 

Waiting for their PB & J's!

Peanut allergy desensitization and this final step comes with so many emotions it is difficult to explain just what it all means to a family with food allergies. As many people know, life threatening anaphylaxis takes over your life. Anxiety and fear creep in at the start, heightening as certain realizations strike you - a bite of food could be your child’s last, trust is your only option, and the world is a vast place centered around food! When you grasp the fact that your child doesn’t and shouldn’t rely on you constantly, it is frightening to think of the possibilities. For nut allergy families, simple choices that most take for granted are simply not choices – dinners out, birthday parties, church fellowship/luncheons, and extended family gatherings (and unfortunately, for some - close family gatherings). The weight of a burden you can’t do anything about makes you constantly hope your child won’t feel excluded, apprehensive, or worst of all, bullied by another child, or adult in their lives. 

Best PB & J in town, Lety!

When Maddy was younger it was easy to hide much of this from her, to make it a non-issue - have discussions without her, choose safe restaurants or none at all, skip luncheons altogether. As her knowledge of the world grew, so too did her inclination to be a part of it. Maddy’s confidence, easy smile, and wonderful ability to make friends meant she was, as they say, a social butterfly. We would not have had it any other way. In those early years, we did what was needed to make sure she was safe and so did everyone around us – family, friends, and church members, while allowing Miss Maddy to flourish as an individual. From the moment we enrolled in preschool, we were involved, deep and we never expected just anybody to be responsible for Maddy – it was a team effort. And it was still an enormous task, it was challenging, and it was frightening! 

When I finally grasped that desensitization was the best option for us, my own worries for Maddy were worse than they’d ever been and had reached their tipping point – a place that looked & felt uncharacteristic for me as anxieties regarding the food allergy took over my emotions. It was time to do something different; peanut allergy desensitization seemed right. This family doesn’t tend to sit around and just let life happen to them, especially when there are options. 

Finished it!

Our pride in Madeline through all of this has been no secret. She’s remarkable! As are all the kids we have met along the way & those who will come after us. Writing about our journey is the closest I can come to screaming from the rooftops with excitement. These heroic children have not held back; I’ve seen more nerve from them than I can imagine in most adults. From day one of OIT - when Maddy popped a hive in the office with that miniscule amount of peanut dust in the Kool-Aid solution to peanut flour to her first peanut until now, Maddy has been a trooper. Like us, she sees the possibilities - “Mom, when I’m done with this can I have fortune cookies?” she asks. She dreams big and soon will live big!

Such a relief,,, can you tell I was anxious?

Graduation day came quicker than expected and was a big day for our family. Phone calls, e-mails, and hugs for luck came at us all week as we prepped. Conversation regarding how she’d “take” her 24 peanuts, the greatest amount she’d ever eaten, abounded for days prior. Her entourage prepared for the trip, as well– Grandma Linda, Papa, and Nanny just had to see this happen! Madeline was eager for the day and didn’t show her nerves until just before we walked in the door. She’d finally decided on peanut butter and jelly toast - her favorite PB mode, even if a bit filling, and Steven, her buddy and fellow graduate decided on the same. The two kids settled in as Lety made the most anticipated PB & J’s these families had ever seen. 

I knew OIT had prepared her body these last few months but I was the most nervous I’d ever been. It was hard to keep my anxiety and my pride in check. We were on our way for what would truly be a new beginning, and it was thrilling, and I was certain I would puke!

Proud baby girl!

Nerves calmed though, as friends & staff cheered the kids on for their ‘24 Peanut Challenge.’ Graduation Day! It was quite an event to watch Maddy and Steven share this special day. These two, support for each other now for months, had become buddies – today was no exception. My own anxiety eased as Maddy’s PB & J disappeared and signs of reactions did not appear. Celebrations ensued – faces, lips, and arms maintained normal color, breathing rates did not increase, and heart rates did not race. Prayers were answered. Phew! 

The Comprehensive Food Allergy Clinic was a happening place that evening, just as it should be! Dr. Mayer ran around as he does and our little OIT patients did too – a typical evening at our favorite allergists’ office! An hour after that last bite, though, Maddy and Steven, became the newest Peanut Allergy Desensitization graduates! It could not have been a more exciting day for our family! Tears, cheers, and hugs were shared.

It's their place, you know... at least they think so!

Modern medicine, through Peanut Allergy Desensitization, just handed my daughter the greatest chance for her future.  A future where a simple bite of a birthday party cupcake will not hurt her, or a teacher’s mistake will not lead to the use of an epi-pen a ride in an ambulance, or worse. The worst of all possibilities; unspeakable. This future, Maddy's future, is filled with certainty, confidence and fulfillment. It will now be safer, healthier, and happier. Her future, without the worry of food allergies holding her back, will allow her to participate more fully in life events she simply would not have been able to take part in before, or too frightened to try –  sleepovers, airplane rides, and overnight camps – without mom there to hold her hand, look at every ingredient label, and speak to each and every parent about food lists, the epi-pen, the protocol. It’s an insurance policy we have never had before. Life can and will now happen!

He'll sign autographs... in the form of an RX!

Throughout my blogposts, I have, and will continue to recognize our friends, our family members, and others who have supported us along the way. We love them more & more for what they have done for us in these years and feel closer to them for it. Our appreciation will never be fully realized. They have always understood, empathized, and come peanut-free! They have always taken care of us.

Obviously, though, I would be remiss if I didn’t acknowledge the staff at Comprehensive Food AllergyClinic here - Dr. Mayer, Nurse Amy, and Nurse Lety, we believe, are the most exceptional medical staff to bless this earth. They not only provided us with this amazing gift, OIT, but comforted us, advised us, and guided us through a journey that we never dreamed would become a reality so soon in Maddy’s life. I would recommend this facility to anyone and I would travel 100 times the distance to see them again for what they gave us each week. 

 So happy together!

Dr. Mayer, Nurse Amy & Nurse Amy provided more to us than just peanuts each week. Maddy would have never agreed to this therapy if she didn’t feel safe, comforted, and loved from the get-go, neither would I, for that matter. Dr. Mayer’s office was a home away from home each week where we made many friends - lovely people that we will never forget. Such a bittersweet goodbye when we left the office that graduation day. They provided us with the tools to go with confidence and knowledge of our new found position in the world, not to mention, the comfort in knowing they would always be there. Like others that went before us, though, it was our turn to say farewell and in turn, hello to a world filled with new adventures that Maddy simply cannot wait to try.

Watch out world, here she comes!

Friend, Dear Friend

Maddy & Livvie

One of my favorite quotes about friendship is “A good friend is cheaper than therapy” (author unknown).  In my life, over a beer, during a car ride, in the classroom, or on the phone, many a conversation have helped me hash out my problems or theirs. My friends are as important as  family and we’ve raised Maddy to believe friendships are not only important, but essential components to a healthy life – expecting her friends to treat her well and to treat her friends the same – by giving and getting love, support, and a sense of belonging. 

The girls playing at the desk.

In our lives together, Jason and I have not only been lucky, but blessed, to have an amazing group of close friends. This remarkable group of people has been a part of our lives since college, some before. At Michigan State we studied together, partied together, and at one time or another, lived together. We’ve stood for each other in weddings and have held each others' newborn babies.  Every time we see each other we hug each other like it has been a decade since we’ve spoken, but pick up conversation as if it was just yesterday. We try to get together when we can but also reserve a few very special days out of the year just for each other, New Year’s Eve, the Fourth of July, and an especially fun day in September.  Even as we age and can hardly handle our adult beverages anymore, we party like 30-something rock stars – stay up late around the fire, argue over politics, religion, or any other controversial topic that may come our way and maintain every bit of love & respect for each other through it all. Even as the group has grown to include new spouses and the occasional neighbor or two, this is our core. Our history. 

Amazing Doc - Doctor Mayer.

Amazing staff - Nurse Amy & Nurse Lety.

Madeline has watched us with this group of friends and others. She has been witness to how we treat our friends, as well as how we expect to be treated in a friendship. Jason and I would do anything for them because our true friends, this group I speak of and others I haven’t even mentioned have been with us through thick and thin, especially in recent years. When Madeline was first born, they were there at the hospital & then the house to hold her little hands. When chemo threatened Jason’s hair, these guys shaved their own heads. When trips back & forth to the oncologist were simply too much - we were given the amazing gift of a cleaning lady to help out with the house - now that's friendship! We are surrounded with beautiful people who hold us in their hearts and them in ours. Friends keep us going at times.

One big happy family!

The beauty is that in watching Madeline experience peanut desensitization, she is learning more about friendships, too. Madeline’s best friend, Conley, will always be her BFF, “till we die” they say and we are sure to keep a regular play date going. But the “peanuts gang” has a different connection that has provided Maddy a chance to show empathy, caring, and support that she has not needed with her BFF so far, but may someday. When Ella graduated she had a chance to see where she was headed with the program. When Izzy had to stop OIT because it was just not working for her, we said prayers, talked about Izzy's feelings, her family and what it might mean for her future. We still do. And when Livvie graduated it was bittersweet. It was hard for Maddy to say good-bye but so awesome for her to see her really great friend moving on to such great things. She wanted nothing more than to be there to see Livvie eat that peanut butter and make sure all was well with that final challenge. Madeline has treated each situation with the dignity and grace of a mini adult; I am impressed and proud of her!

The girls sitting still long enough for a pic!

Maddy has felt nothing but love and support from the staff and patients at Dr. Mayer’s office – exactly what I hope for her in life. Everyone cheers her on - like this time as she went from 250 mg of peanut flour to 500 mg - the last stop before a peanut -  and she does the same for them! The day Livvie graduated was a happy one for everyone – another success story, no problems for Maddy, just another day of playing with friends for Livvie, and just another (exhausting) day at the office for the staff - and another reason to feel hope for those living with food allergies! As the parents bonded over next steps, Maddy, Livvie and the rest of the gang just had fun – because sometimes that’s what it’s all about, too!

Drawing a Line in the Sand

As a mom, you all know, there is never enough of what we need – money for what we want, let alone need, enough arms to complete our tasks, and certainly enough hours in our day. Projects and deadlines consume our life, take up our energy, and exhaust us. In these recent months I have been reminded, that sometimes, we aren’t able to do it all, even if it all seems ‘essential,’ and there are times we must set aside our career, our committees, and our tasks for the truly important ‘things’ in our life.  A good friend of mine put it to me quite simply, “sometimes you just have to draw a line in the sand,” she said, even if it seems vital; this simple phrase has helped me prioritize lately and has thus changed my life!

Maddy's next step.

For whatever reason, I get into ‘the zone’ each school year come September. When its ‘zone time,’ I feel the need to be Super Mom, Super Teacher, Super Wife, and this feeling overwhelms me, takes over my being and makes me feel as though I can handle being a part of any group, organization, or add any other responsibility to my life that I can sign up for - completely forgetting my personal needs and wants along the way. While being a member of PTO, holding the Room Parent position for Maddy’s class, and being active within our church are important to me, they keep me busy beyond regular work hours pretty regularly.  And though I am on a friendly basis with my co-workers, am able laugh with them at lunch, carry on friendly, yet professional meetings, there are still agendas to fulfill and action items to complete – my work day is filled to the brim, often spilling over! Add one 160-mile round trip drive to the allergist’s office each week and it tends to compound the ol’ “To-Do” list. 

50 mg of peanut flour in apple sauce.

Much like most parents, though, I am stretched to my limit. As it turns out, though, I pretty much suck at knowing my limits. I bite off more than I can chew and then suddenly I’m choking!  And as I get further in age and career, I get worse at this. In the past, I’ve juggled responsibility just fine, but as Jason has recovered, I’ve taken on more and more, believing I can do it all with passion and vigor because I feel it is all important. When it comes to Maddy, the need to be in control and be directly involved because of her peanut allergy is absolutely necessary for a number of reasons - I don’t want anyone to view it or her as a burden, I want her to be safe, and I know that allergy backward and forward - simple, right? In both cases - my husband’s cancer and my daughter’s allergy, I sometimes feel as though I owe it to the world to do more, to give back, “Hey, world, I owe ‘ya one! You save my husband & keep my daughter safe; I’ll solve the problems of the world, one committee at a time!” And so my line in the sand has never existed, until now. 

I knew I had taken on too much when my husband finally let me know enough was enough and he had noticed. It was evident in the amount of work I’d been bringing home at night, weekends, and my stress levels. It was clear that there was a pattern to migraine headaches, zonking out by 11 pm on Friday nights and my sweet mood since school had started. There was no reason for this other than the level of stress, the amount of hours spent in front of the computer, and how little I’d been able to make it home for the bus in the afternoons. The reality was it wasn’t fair to him, my daughter, or me. So when my friend and co-worker told me, “sometimes you just have to draw a line in the sand.” I thought about that. A lot. I used the line. A lot. I have said it so much to my co-teacher that she has given me dirty looks. 

The moment my co-worker actually said it to me was actually not a good one and I was actually kind of pissed at her for not helping me with my problem. Jason and I actually had just been in a good ‘ol fight the night before where some of these same issues had come up. I had been stressed to the max at work. I was trying to go above and beyond to get some things completed - it was a good time to draw that line. I walked away from her, down the hall, walked into another co-worker and broke down, right there at work. It was one of those moments, one of those people you’d never expect to reach out to or have a moment with, but I did and I needed it. Peanuts, action plans, homework, assessments, dinner ideas, curriculum, agendas, dosing schedules… it was all swirling in my mind and not meshing at all. After a moment alone in the bathroom I composed myself, got my act together and faced the day again. The line had been drawn. 

Lucas is moving right along!

It is amazing what a few little words can do to a person. I don’t even think the person who said to me “sometimes you just have to draw a line in the sand,” has any idea the impact that moment would have on me. But at that moment, it meant so much. I often put a lot of pressure on myself to put out the best that I can at what I do. So, when I have my hands in everything, it makes it extremely difficult to put 100% into everything. I have an extremely difficult time admitting defeat and an even more difficult time admitting when I am wrong. So the time had come to make some changes before it was too late. I bet I’m not unlike many other “Super Moms” out there. 

Drawing a line in the sand for me meant this- refocusing.  Maddy’s desensitization is what our family is concentrating on right now. October 3, 2012 was her final peanut solution day and it went off without a hitch! That same day we celebrated with another little boy in the office, Lucas, who got to eat his first peanut. Maddy & Livvie cheered him on while waiting out his dosing hour and he had no problems. Maddy cannot wait for that to be her! 

The following week, October 10^, 2012, we entered a new stage in our peanut desensitization journey: peanut flour! It is amazing with what excitement my child attacks OIT. She and Livvie began a project, a drawing of “Peanut Land,” a creative region where even those allergic are safe from the dreaded legume! Livvie and Maddy’s bond over Peanut Land is extraordinary. We are thankful for all this therapy is doing for Maddy, especially the support she is receiving from the kids in the program. She loves to see them each week. They keep her going week to week. 

Peanut Land: A land where no child is allergic to peanuts!

With the mindset that my family needs to be central right now, I set about scaling back, and setting a few new goals for myself. There is no good reason that I need to run around like a crazy woman for my job, for my church, or for PTO. So, I dropped a few committees, said no when asked to join others, and did not raise my hand to participate when asked to help when help was needed. Yes, there was some guilt, but it subsided when the knowledge that others would step up announced itselfPThere is no good reason that myself, or my family shouldn’t come first. Sometimes that line in the sand needs to be drawn in order to keep my sanity, sometimes in needs to be drawn to keep marriage aflame, or refocus my family. It may also mean, it makes me a better teacher actually, or a better board member. In my life, when I take on too much or when I am tempted to do so again, I will remind myself to draw that line, especially now, when my focus is my daughter and my family. They need all of me.

Right on Track

I make a lot of wrong turns. Like, really, really wrong turns. Recently a friend’s Facebook post embarrassingly admitted to making a wrong turn that took her 22 miles out of her way. Though I only admitted in my head, and am only telling you all now in secret, I know exactly how she did it. I’ve done it plenty of times. For some reason, your warm hearts and broad shoulders make me want to open up and spill all my secrets. My husband certainly knows I’m directionally challenged, but the degree of which I don’t think he understands. Now that we have a GPS system, it has actually become worse – I go nowhere without it & at times shock myself into thinking I simply can’t go anywhere unless I have it. I don’t want to go miles & miles out of my way. When it comes to our lives, we take wrong turns all the time, whether we admit or like it, it’s how we learn, how we fix our mistakes, how we grow. I guess if we were perfect, life would be boring. 

Need I say more!

Some days, though, it feels like all I do is take wrong turns - start the day late, say the wrong thing to my husband, miss an appointment, whatever it may be – I mess up! There are plenty of moments I second guess my professional judgment – did I deliver that lesson effectively, handle that student fittingly? In parenting, it’s much the same - I give my best as a mom, but there are many days I go off track. According to Parenting magazine, I’m probably not feeding her enough whole grains, I’m certain she’s watching too much T.V. and I know she’s not reading near enough. I am also pretty sure I overreact at times, am sometimes impatient, don’t do enough to help in the classroom, and then in a strange catch – 22, am somehow helicoptering, tigering, or whatever they call that parent that over-controls these days! Everywhere I look, everywhere I go, I am certain there are things that I can’t get right! The question really is - who doesn’t make these kinds of mistakes, get off track at times? Life is tough, parenting is tougher.

I know this because at the end of the day I am beat; exhausted to my core from our over-planned, overworked schedules. There are days I feel like a MAC truck has hit me full speed; days I am so tired that when I drag myself out of bed each morning at five in the morning, I look forward to that evening’s bedtime. But each day we do it again at 110% - full speed ahead, making decisions, left and right along the way. 

The staff with all the answers!

So, when doubt - questions, worries, and concern, enter my mind about the desensitization path being a wrong turn for Madeline come about, most often I’m able to tamp them down with answers from Dr. Mayer, online discussion groups, talking it through with Jason, or even seeing Madeline’s quick and sure personal confidence. The truth is this treatment is working and it is working for many, many children, which is exciting. But if she has even one symptom, I begin to second guess this journey we’re on and the “what if’s” make roadways in my mind. If she has even the slightest hint of a tummy – ache at the office, I worry, “Are we doing the right thing?” If a hive threatens her skin, my stomach worries. Dr. Mayer alleviates my fears always, especially since none of her symptoms are ever truly worrisome. Jason & I wonder if her symptoms may be bubbling up from her psyche, another concern of mine altogether. As a good friend of mine, one who probably knows me best, says, “Maybe she’s like her mom and pushes all her real feelings down!” Maybe I need to sign her up for therapies now… or just get her going on a blog!

Utter happiness!

Much of my personal apprehensions were relieved September 26, a regular appointment day for Maddy, but an extremely special day for “one of the girls,” a friend we’ve come to know through Dr. Mayer’s office,  Ella. Some know her simply know her as ‘E.’ Ella began treatment, peanut desensitization, in April 2012 and had only a few setbacks here and there due to sickness, fevers and such, but really a great treatment otherwise. Ella’s parents, Angie & Chad, found Dr. Mayer’s office just before they were ready to pack up and move their lives down south to another doctor’s office to receive care for peanut desensitization because, as anyone who has a child with food allergies often feel, they were desperate to find care for their beautiful daughter. Ella is anaphylactic to peanuts, which they learned the hard way when she had an anaphylactic reaction at a Pizza Hut in January 2012. They were not about to go through that horror of anaphylaxis again – watching their daughter suffer – especially when they could do something about it. 

The kiddos!

Our entire support network showed up early that day to celebrate Ella’s graduation – a 24 peanut food challenge to mark her final day of desensitization and cross the line into maintenance. A celebration was in order! We marched in, one by one, gifts and cards in hand, words of encouragement floating out of our mouths as Ella began tablespoon after tablespoon of peanut butter that would mark an end that was actually a new and wonderful beginning of a whole new life for her, with less fear and anxiety filling their everyday lives. Her parents watched, teary-eyed, and the rest of the parents, too as tears of hope filled our hearts as well. Someday our children will do the same. Our own children, a little scared to go too close to all the peanut butter drew near her in awe as Ella completed the impossible. Then it was over, she did it, jumped down and played. Simple as that. In the hour that we waited, nothing happened – and that was a good thing. The rest of the kid’s doses were increased, we had homemade peanut and tree-nut free cake to celebrate Steven’s birthday and Ella’s graduation, and we watched an endearing video of Ella’s journey made by her father. We celebrated, laughed, and dare I say cried just a bit together about the wonder that is happening before us, together.

Group hugs were in order!

In that dosing hour we forgot about hives, stomach aches, and reactions, and other possible problems. There were none. Nobody asked if the cake was okay, to check ingredients, or to check an itchy spot. All was right with our little allergy-free world! Ella even got an entire gift bag full of peanut-filled candy from an OIT alum!

Amazing family paving the way!

In a moment of Zen, I looked around the room at my support group, and Maddy’s. Everyone was smiling, happy. Ella, beaming, her parents too. This celebration was why we were completing peanut desensitization. There was no other reason than this moment. The journey, in this case, is about the destination, and we have to keep our eye on the prize. Every little stomach-ache, and tiny hive, is allowing our daughter’s body to prepare for something bigger, something greater. In this case I am looking forward to that bigger picture and ever since that moment. I thank you, Chad, Angie, and especially you, Miss Ella, you are some of the bravest people I know and you paved the way for many of us to come. Thank you for providing the road map for us, being our GPS in this life-changing experience. We appreciate your guidance, your advice, and most of all, your support. This is one journey that we’ll be on for a long time, no matter how many miles; we’ll sit back and enjoy the company!

Lots to celebrate, too!

Peanut/tree nut free party!

 

 

The Moms!