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| 1st bite... lots more to go! |
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!
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| 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.
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| 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.
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| 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!
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| 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!
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| 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.
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| 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!
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| 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.
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| 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!
