This is long overdue, but here is the post about our first trip to Akron for EPI 743 drug trial.
First a quick background on the EPI med
There is still no cure for Mitochondrial diseases, but there is a drug trial for a med call EPI 743 (will be different commercial name when it comes out), it has shown to improve life of kids on it, and in a few instances even reverse some of the symptoms (however that was a very small study so those results should be taken with a grain of salt).
We have been trying to get Jagger in the trial since early March, we had it all set to go in June in Akron, OH (one of the very few sites in the country doing the trial and the closest to us) but then the Pharmaceutical company changed a few things in the protocol and it has to be approved by the hospital and the Institutional Review Board (IRB) and that took forever
In the meantime, the trial was moving from Phase 2A to 2B which required a known gene mutation and has a placebo element to it, meaning that half the participant will actually get a placebo for the first 6 months and not the drug itself.
So we could not get into Phase 2B since we do not have a gene mutation at this time, and we were not going to take our medically fragile/immune compromise child across the country to possibly get placebo.
So after months of waiting and sending medical records (almost 2000 pages), test results etc., we were finally admitted as the last patient in Phase 2A!!
The trial consist of 3 visits to Akron Children’s hospital in the first 13 weeks, then a follow up every 3 months (which we can hopefully do in Atlanta, at least some of it)
So we embarked on our big adventure.
For this first trip, we decided to drive, it gave us more flexibility and since and we were not 100% sure how long we needed to be there for the initial visit.
I am sure a lot of you drove long distance with kids, but with a special need child, it is a whole different ballgame! Annett was amazing at packing the car and despite being very very full with all the equipment we need for Jagger on a daily basis I was still able to see some of the road in my review mirror.
On October 25th early afternoon we took off for Akron. The plan was to drive 6-7 hours and spend the night in Lexington, KY.
Jagger did very well in his car seat for the first 4 hour or so (and we found out during the trip that was his absolute limit), and we made it without much trouble (even if the last hour was very difficult for Jagger) to Lexington.
After a fairly agitated night (pain crisis that required morphine) we took off for Akron. The remaining 6 hours turned into almost 9 hours of absolute nightmare.
We got stuck in major traffic in Cincinnati first then in Columbus. It started to rain about 1 hour after we left Lexington on Friday morning and rained nonstop until Wednesday afternoon, thanks to Hurricane Sandy. Jagger was super agitated and we were only able to keep him in his car seat for 2 hours or so. About 1.5 hours away from Akron, Mister Jagger decided to poop, so I had to find somewhere to stop to change him, but we were in the middle of nowhere.
So I pull in this old country gas station and we started to change him by the gas pump (only spot that was covered). And here come the TMI, but it was the most explosive diarrhea he ever had. It took an entire packet of 75 wipes and a beach towel to get him clean, it was all over his back, up to his neck and of course he was screaming and moving the entire time and it’s really not easy to change a kid in the back seat of a car! And the poor kid was probably cold, as it was no more than 45 degrees outside!
But after all those emotions, we finally made it to our rental house by around 9 pm. Since we had to stay several days, we decided to rent a house, so we could use the washer and dryer and it was actually cheaper than a hotel.
We did not do much on Saturday and Sunday, and just relaxed, some grocery shopping and I drive to the hospital to make sure I knew where it was for the Monday appointment.
My good friends Jeremy and Cindy that live in the area came and had lunch with us on Sunday; it was so good seeing them. We all went to University of Indianapolis together back in the days and we really don’t get the chance to see each other very often anymore so it was a great visit.
I did get a call from Dr. C on Saturday night, so that is usually not a good sign, but he just wanted to move our 11 am appointment to 7 am as he had to try to get out of town before the hurricane hit full force.
So very early Monday morning October 29th (Jagger usually doesn’t fall asleep until 1 or 2 am and sleep until 10 am so this was tough on him) we drive to the hospital.
We met with Dr. C and his nurse Hilary, we had to answer a ton of question and fill many forms to get started on the trial.
Dr. C did his evaluation of Jagger and they try to take blood. However that was not successful so we were sent to the lab on the other side of the hospital.
The lady in the lab was really good, but the orders were not put in the right way so after she was done and had Jagger blood, we realized we needed more blood, so we had to get him poke again:(
We then had to do a baseline EKG, and we were able to do it earlier than our appointment so we were back to the house by lunch time.
Jagger and Annett were very tired so they took a nap and I went to the Pro Football Hall of Fame. I have wanted to go there for a long time, so I was happy I finally made it there. It is a pretty cool place, and everyone that like football should check it out!
Tuesday morning we went back to the hospital to receive our first dose of EPI 743, and then we had to wait for 2 hours and do another EKG.
So in the mean time we went to the cafeteria and hanged out for a bit, as we were walking back to the heart center, we heard “Code Black” over the intercom and it turns out the hospital had a bomb thread! Their first ever, and of course when we were there! LOL
So the whole place was on shutdown and cops/maintenance people were going room to room checking for suspicious package.
We were still able to get the EKG done and then we went to the parking garage (attach to the annex and not to main hospital) so we were able to leave and head back to the house.
On Wednesday, we just took it easy, relaxed and started to pack.
While in Akron, we were able to see one of our new Mito Mom Friend Shawna and her adorable little boy Braylon. It is so nice to meet in person after talking all this time on facebook!
We also had a visit from my friend Chandra from University of Indianapolis. I have not seen her since we graduated (over 10 years ago) so that was great to catch up for a few minutes and she was able to meet Jagger, even if he was sleeping at the time of her visit!
We had the house rented until Friday am, but we decided to leave on Thursday morning and follow the same itinerary and spend the night in Lexington.
We still hit traffic around Columbus, but nothing near as bad as the way up, however Jagger was a lot more agitated and did not sleep at all (which is not good, as we can usually drive longer when he sleeps). Around Cincinnati, we had to stop to change him and Annett took over while I tried to calm him down in the back. Did not work very well, but we made it to Lexington around 10 pm.
The night was ok, and on Friday morning we left for home; however Jagger had another idea in mind, and was whining the entire time in the car, so we were not able to make it farther than Chattanooga and had to stop and spend the night at a hotel there. That was not plan, but if we did learn one thing with a special need child is that we MUST be flexible at all time, almost nothing goes according to plan!
Jagger was a bit better on Saturday morning and we finally made it home early afternoon on Saturday, it was great being home and I totally understand the saying “home sweet home”
We have to go back early December, and this time since we only have to be at the hospital for 3-4 hours, we will try flying.
That will also be a crazy adventure as we cannot take all his equipment with us in the plane, and it requires a TON of planning (especially with oxygen and meds).
But hopefully that will go well (and Jagger will not get sick with the all the germs in the place) and we can try to fly the next few times we have to go to Akron!!
Annett and Jagger at the house in Akron
Sleeping between Dr Visits at Akron's Children
Ok, now I am awake! What are we doing here??
Ready to go!!
Hotel have big beds, I like that:)