Visit one was successful, and after all yall’s support, I wanted to pass along a summary of the visit. Because why can’t we share!
First off though, a very special thank you to everyone who enabled this trip by watching our kids, Mom and Col and Mrs. Jones. Thank you all for the moral support and humor throughout the day! And thank you especially to Melanie, who got up 3 hours earlier than normal, drove the whole day, asked questions, took pictures, was my sounding board, and all around awesome person on this whole trip and every day of my life. I wouldn’t be able to do any of this without Mel.
We left home at 0330, NOT snowing here in Manassas/DC, fast drive up to Reagan National, and early enough to get a Dunkin Donut and coffee (again, thank you Mel!) The flight was very uneventful but beautiful to look out the window.At first I thought we were going to flying over the water but I was deceived, it was clouds!
So, I’ll be honest and say I don’t remember Boston at all. I “think” I went through when my family went to Maine BACK in the day. Outside the airport, we took the Ted Williams tunnel out of the city to Worcester (Wistah… Wustah…) and the architecture in Boston is quite lovely! I mean by that I didn’t see a single garish building (Ok Fenway doesn’t count) on the whole drive. THAT is impressive. The next impressive thing is the number of old churches. Steeples, steeples, steeples, gothic architecture, man…. Even from the outside, BEAUTIFUL.
Umass was really cool, new, and BIG. Luckily we had good directions, and we got there early enough to have breakfast and also go in 30 mins before our appointment at 1100.
And ok, this is what you wanted to hear about. The visit was awesome. Dr. Owegi was trained by my neurologist Dr. Maragakis, so she knew our whole team up at Hopkins, which is a huge reassurance. It’s just nice to be able to have doctors that are on the same page on things! The clinical research assistants were also awesome, they had been in contact with me since January and helping me get set up on the whole trip. (They really were awesome!)*
The fun parts began after I signed on the dotted line. The physical exam, always fun to see how my body is doing. I swear at this point I’m like a drunken sailor. Then, the breathing test. THE BREATHING TEST!
I got an 84 on the breathing test even though twice I nearly broke down laughing. Because LOOK AT IT! IT’S RIDICULOUS! The good news though, and I’ll be BRUTALLY honest here – breathing means survival. If I’m operating at 84, then I’m doing FAIRLY well – I would say that a year in from symptoms, I’m beating the odds so far. God be praised.
This wasn’t the hardest part of this whole thing. That’s to come later. The fun part of this is my brother-in-laws voice in my head saying “push push push push push push push push!!)
Then we had an EKG. Gotta make sure my heart is functioning normally. This one also was humorous as the little sticky things wouldn’t stick. And I had trimmed my chest hair because I KNEW. Still, didn’t work, it fell off.
But wait, there’s more! The final thing was to draw blood. And if you are following the blog you know I don’t like needles. The docs always stick it on the inside of the elbow where your arm is super sensitive and I imagine the needle poking even deeper into my arm and…. ew. I hate that. So… they did it to both arms. I don’t know what the heck was going on, because my veins were popping but they couldn’t get any blood. Called in backup, even she had trouble.
I actually think that blood draws on the wrist hurt more, but are easier to grimace through as opposed to the elbow area. So I’m gonna ask for that in the future.
Now we wait for the results, and if they are good the next appt may be in a month and may only take about 15 minutes, so we “might” be able to do it over the phone!
We were there from 1030 to about 230, then Dr. Owegi also gave us food recommendations at my request, and Mel and I went for a date in Wustah… Wastah… sometime Wystah… at this place called Volturnos.
Neapolitan pizza, it’s REALLY good. I think we may go back.
After that the drive back to Boston, and again where Mel showed herself amazing. Straight shot back up 90 to Boston and I fell asleep and Mel LET me. Holy cow, driving solo in a different state with her navigator asleep??? And she’s already done most of the hard work- I just had to get stuck with needles.
And back at the airport, which aside from Mel and I getting patted down again, them not understanding what a picc line is, and being 2 hrs early for our flight, was fairly uneventful. Mel and I were pretty tired, especially Mel’s hard day, and we were able to make it home where the Jones’s were home with the kids. At 2345. Have I said how awesome Mel is? So I got her a thing that she likes (my love language), and to many more!
Again, thank you ALL for all the help watching the kids, offering moral support, praying for us, supporting us on Facebook, offering contacts and help… Thank you all! I love this community, I love meeting new people and old friends and feeling God’s love through you. I even love meeting new people in the ALS community that are so nice, and caring, and genuine. I wouldn’t have met them if I didn’t have ALS so it’s a blessing to be able to do so. That’s right, ALS is a blessing.
If you have any questions, go ahead and ask!
*(So the trial – I’m not sure if I’ve explained it, but Dr. Owegi was really thorough in explaining the whole thing. The big takeaways are: bone marrow harvest on visit 5 (they will take the marrow from my hip. They’ll put me under for it, so we might probably overnight that day and enjoy something around Boston. Then, they’ll grow the cells and when they are ready they will inject them into my spinal fluid on visit…7? That is a 24hr inpatient procedure. [This is Spinal Tap!] The injections will be 3 total, and the whole study is about a year. In another post I’ll explain the rationale of this whole thing, and the hope and the desire of the outcome.)