Mayo - Round 1: Church and a Jet Plane

Today’s update comes from the Mayo Clinic in Rochester, Minnesota. Jesus is walking with us on this path and regardless of what happens between now and whatever the end looks like-we both feel His comfort and presence with us every moment on this journey.

We left Michigan Sunday evening to fly up to Minnesota; arriving at midnight Central time (woohoo losing an hour! not..) This morning had us up bright and early and checked in at the Clinic for several hours of appointments. Marcy booked us a later flight so we could still attend church and family brunch, but man, we will both be so happy to hit our hotel bed tonight.

Todays appointments include several mountains of paperwork, consent forms, and all the hoops involved in getting enrolled in a clinical trial. This trial is an immunotherapy trial that combines two drugs; one that has traditionally been used for lung cancer, and the other an experimental drug. This trial has only been done with 20 people and is now on the Phase 2 stage and being run at the Mayo Clinic. Phase 2 of a clinical trial means that they’re measuring for efficacy of the treatment. They pair it with surgery, which I had to have anyway given that the tumor has continued to grow even through chemo, and they test the tumor tissue to see if the treatment is working, and they’ll use it for future research to hopefully help find a cure for this disease.

We’ve also been able to do a video visit with the neurosurgeon who will be performing the surgery and holy cow-this doctor really knows his stuff and put us both at ease, but was also very clear in how he explained things. We both really liked the first surgeon for the first surgery, Dr. Figueroa, but this guy-Dr. Parney does laps around Dr. Figueroa. And I would say that to both of them respectfully.

We are so grateful for this trial; our team in Michigan would have seen me in surgery on Monday, April 24th. The frustrating part is that they never mentioned that we could search for clinical trials at that point. Marcy has done a ton of research, and we were already connected to the Mayo Clinic oncology team from an initial consult earlier this year, so we were able to get into this trial in time. That’s one of the biggest criticisms of our Michigan team that they never mention clinical trials unless we bring information to them. Without this trial I would most likely be dead within the year. With the trial, the results of the initial 20 participants showed an average life expectancy increase of 3x. The care team here at the Mayo is outstanding and they are all working together to help me live as long, and with the best quality of life, as they can.

So what’s next?

Tomorrow I have my first treatment with the immunotherapy drugs; one a shot and one is delivered intravenously which takes roughly 30-45 minutes. Then I have another craniotomy in a week, also here in Rochester. Hard part will be that surgery and all the risks that come with it. They have to go through a healthy part of my brain to get to the tumor so there’s a risk of left side weakness, temporary cognition troubles, and more. The road to recovery gets longer and riskier with each surgery.

I’ll have Marcy with me and we plan to drive up for the surgery so we can bring all our creature comforts. Last time I had surgery, Marcy put me to sleep playing her guitar in the room and she really wants to do that for me again.

We will then also have to fly to the Mayo Clinic every 6 weeks for the next 2 years for treatment. They said that because one of the potential side effects of the immunotherapy injection could be brain swelling which could cause confusion or even another seizure, that I need to have someone with me when I come. Marcy and I will have to do this hard road together and there’s no one else I’d rather have by my side.

Thank you so much to everyone who has reached out; your messages mean the world to us. It helps us feel connected to you all and not so alone.

There is a huge cost to all this travel so we also so appreciate those of you who gave, have given, will give to the gofundme. We are beyond blown away by your love, care, and generosity which has given Marcy and I this chance to have more time together.

Thank you again and we’ll put out more frequent updates to keep this community all up to speed. For now, Marcy and I found an incredible brunch place where we were able to eat, recover, and plan our next steps. We are in very good hands.

Also, just to throw something completely different in these posts-I recently had the wonderful opportunity to stumble across a new Indian scout motorcycle! It was beautiful and made me remember the motorcycle I had growing up.

To the owner of such a gorgeous bike-thank you for parking in this particular spot. Tried to not look like a weird stalker or creeper while “subtly” trying to take this photo.

So in the meantime, if I can ask for either one of three different things please:

Refer to the previous post called Mayo Clinic & Clinical Trials

Kindly and prayerfully consider a donation to the gofundme as all funds will be used for traveling and paying for medical expenses not covered under insurance, link can be found here.

Please keep Marcy, Matthew and myself in your prayers. This has been without a doubt the hardest thing I’ve ever gone through but with Marcy by my side and the support of each of you-it gets easier and easier every day.

Also, because some people have asked, but not to shine the spotlight on them in a bad way-No, I have not heard from the VA yet. More updates to come.

Love you all.