Hanks Place

Now that Henry’s “out” of the main part of the Regeneron study, the meds get delivered to us monthly! He’s starting to gain a little weight and has been seeing a neurologist for some small side affects but all in all we’re so grateful for this!

Today henry is having his last Endoscopy as part of the dupixant trial! 52 weeks flew by! While we’ve seen some improvement with symptoms, overall it hasn’t been the vast improvement we hoped for last year. However, Regeneron has agree to keep Henry in the study for another 106 weeks! 💙💙

Welp!! We’re halfway through the dupixant trial!! Today was the halfway scope and biopsy! This also marked Henrys 12th procedure at 9 years old! They don’t even go through the formalities anymore … just “any questions? Nope- great! See ya on the other side buddy!” 😂 got a decent view of his little tissue samples today too! Off they go to Cincinnati 😳!! He had a rough recovery with a sore throat this time and the doc did show us some areas of concern with “crepe paper” tissue in the upper esophagus that has never shown up before. This time around we won’t be told his “numbers” or eosinophil count due to double blind but that’s ok! He’s home resting now and being spoiled with Gatorade and ramen 🍜 💙💙

Today was at home injection day!! We will do every other injection in the home from her on out (I believe). Today his big brother Connor offered to assist! It takes a village to calm him down before each injection. I wish I could say I’m getting good at these but today didn’t go so great. A bit of a reaction at the injection site so now we’re just monitoring him. He is cozy in mom and dads bed with a movie!! 💙💙

Injection three in the books!!
Henry has had a couple very weird side affects (we think) since his first injection. The main one has been spitting-a lot! He seems to think there is a “hair” in his mouth and he must get it out! This has gone on since injection one to this day… so we just got a call from our sponsor saying they’d like Henry to start seeing an ENT as well to rule some things out and a therapist for some major anxiety this kid has.
All in all we’re trucking along, taking the advice as it comes and continue to monitor his weight! Which , even through covid, has increased by 1 pound! 🙌 to small miracles!!

In an effort to document all of Henrys journey with eoe and subsequently , dupixent, we have had a doosey of a couple of weeks since injection one! There was a bit of a scare with his bloodwork that came back from the first injection, so we quickly went to the lab to recheck some things! Then, just as we were given the all clear to proceed with injection two, on January 4, covid struck our home! Our quick thinking, over achieving (🥰) team at Texas children’s got permission from the sponsor to have the second injection couriered to our home! It arrived late this afternoon and we quickly removed it from its special refrigerated box (thanked our courier profusely) and waited for it to cool down to room temp! With a little help from FaceTime, our Nurse prac and pickles the pug: Henry is officially on to injection three!!

Today was the day!! Henry had his first dupixent injection. As part of a double blind trial there were lots of conditions, consents and moving parts to this but it went well! Henry has been a part of the EOE clinic with Dr Davis (pictured below) since he was six months old. She came in today and said “what a journey we’ve been on henry, nine years” and what a brave boy he is to be in this trial to help other kids his age with eoe feel better. Henry told her that kids with disabilities are like superheroes - because they have something no one else has. What a great way to start this next journey. The injection itself didn’t hurt, but the push of meds did. Henry has expressed he doesn’t like the term “drug” so we’ll be calling this “medicine” from here on 😂. He immediately had no reaction but throughout the day started showing major fatigue, which we fully expected, and now a sore injection site, also expected. So! We carry on! Next injection January 4th!

HE’S IN!!! Just got the call from the study manager at Texas Children’s - Henrys scope showed high enough levels of eosinophils in at least two places and he is in the dupixent trial!! Thank you all so much for your thoughts, vibes and prayers for our son !!💙☮️

He’s out! And parts of my baby are on their way to Cincinnati Children’s Hospital! 🤞

Here we are nine years later… after hearing things like “incurable,untreatable”, “new disease, not a lot of research,” “in its infancy,” “may be the youngest we’ve seen with this yet,” amd my favorite- “well, let’s try this and this for a while…”
Today we’re on the verge of an ACTUAL TREATMENT! One that has had significant findings in children 12 and up. Henry is in his final phase of possibly being approved for the 12 and under study. He’s just been taken back for what will be his most intrusive biopsy but one with, hopefully, the most impactful results.

This is such a great article (quick read) about the double blind trial we’re in ! Henry goes for his endoscopy on Nov 17 to determine if he has a high enough level of eos in two places of his esophagus. Henry will be in the first group for his age group (under 12). If so, he’s in!! This article also does a quick rundown of his disease and what he has dealt with his whole life .. 💙

Second Dupixent® (dupilumab) Phase 3 Eosinophilic Esophagitis Trial to Demonstrate Significant Disease Improvements, Underscoring Role of Type 2 Inflammation in This Complex Disease | Regeneron Pharmaceuticals Inc. TARRYTOWN, N.Y. and PARIS , Oct. 25, 2021 /PRNewswire/ -- Dupixent 300 mg weekly significantly improved the ability to swallow and reduced eosinophils in the esophagus compared to placebo, reinforcing positive results from first Phase 3 trial Eosinophilic esophagitis is a progressive disease that