31 pages

(Our peanut allergy research journey. April 29th.)

31 PAGES

I received this set of life-changing paperwork ninety-one days ago.

I wouldn’t let myself read it until now.

I called it “31 pages of don’t get your hopes up”.

It’s actually a consent form for enrolling my  son into a clinical trial for patients with peanut allergy. A bizarre series of events landed us on the list of potential participants, but also required a ninety day “washout” of some of his medications. There was a catch… At any time during the three month waiting period, we could get a call that the enrollment reached maximum participation and was closed.

Here’s my secret to managing a life threatening food allergy:

I don’t get my hopes up.

For fourteen years I have navigated my son through a minefield of hazardous…. PEANUTS???? Yes.

For fourteen years I have had to stay in game mode. Never let down my guard. Never get my hopes up because I can’t afford to get them crushed. I can’t be taken to that dark place because I’ll lose my edge and if I lose my edge, he won’t be safe.

For fourteen years I’ve waited for the call we got today…

THE ENROLLMENT IS STILL OPEN AND OUR APPOINTMENT IS CONFIRMED!!!

One week from today, my son will have his initial screening and we will sign this 31 page consent form. There will be several tests and screenings over the next couple of months and if they all meet the protocol, he will begin a two year immunotherapy treatment. At the end of two years, he is expected to be “desensitized” enough to ingest a full serving of peanut with diminished or no allergic reaction. They can’t use the word cured…
technically…
But I have my hopes up.

(Edit to photo… As a precaution, the name of treatments, researchers, or any identifying information cannot be posted to social media to maintain the integrity of the research. I will try to document our journey through the perspective of a mom and my son which may at times seem cryptic. This isn’t about research… It’s about our journey.)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s