April 19, 2018

Melanie again...this one is kind of long (sorry)
I wanted to sum up what all is going on from a medical perspective.
Yesterday we spent all day at MD Anderson. We met with Mark’s endocrinologist, one of the few paraganglioma (PGL) specialists in the world. He started his research in 2008 and has had nearly 800 patients in that time with this condition. He’s definitely our guy and seems uniquely amazing. His goals at this time are to rule out the following:
1. Metastasis—which is rare but possible.
2. Secretory nature—some PGLs secrete adrenaline and other hormones which make them more temperamental.
3. Genetic cause—about 30% of PGLs are associated with a genetic syndrome which if this is the case, would have long term implications for Mark and our kids would need to be tested too.

So what he ordered to evaluate for these possibilities are
1. CT scan abdomen and pelvis performed Wed night and a nuclear scan (hoping to do the nuc scan in STL)
2. Resting blood tests to look for catecholamines in Mark’s blood
3. Chromosomal testing (more blood tests)

We also met with Dr. Rice, cardiothoracic (CT) surgeon. He agreed to do the surgery. It will be “open heart” and his goal is to remove all of the tumor. Although he feels it’s not likely, there is slight (5%) chance the tumor could be aggravating the major vessels including the aortic arch and the carotids that sprout from the arch. Due to this possibility, he will have to have an aortic specialist on standby. Also, he was honest with Mark and explained that there is a minor chance the vocal cord nerve will be damaged with the surgery. This nerve is running near or through the tumor at the current time. Not the best news for a vocalist. Because of this Mark had to have a baseline eval with a speech pathologist who looked at his vocal cords. That was so interesting. Dr. Rice ordered more CT scans to check blood flow to the tumor and to also make sure Mark has healthy open arteries to the brain. Those scans are happening Thursday afternoon/evening. Surgery will likely be at least one month from now.

So again we wait...

Our prayer requests at this time:
1. No metastasis!
2. No genetic component
3. Thanksgiving for doctors and health professionals who dedicate their time to these rare conditions
4. Thanksgiving for all our friends and family helping us out SO MUCH!!

God is good all the time.

April 17, 2018

Hello from Houston! This is Melanie--I'm taking a turn with this blog. I've never written a blog before, so now I feel cool.
We made it to H-town just fine. It's warm here! A lot of you may know that Mark and I used to live in this city. We moved here on 7/1/01, the day after our big, beautiful, Catholic wedding. We were just two young newlyweds in a big new world, not knowing a soul. It was a great adventure lasting almost 3 years.  It is heart-warming for us to return as we have many fond memories here. We met some some amazing people while living in Houston, many of whom became life-long friends. The parish we belonged to sprouted Mark's passion for youth ministry and even motivated him to teach himself how to play the guitar! But most of all, living here taught us how to function as a married couple, how to depend on each other, how to trust each other. Over these next few days, we look forward to driving by our old apartment, walking around Rice Village, hitting up some of our favorite restaurants, attending Mass at St. Vincent DePaul and visiting with our old pals, Gus and Marta, who are graciously hosting us during this trip. (Thank you Gus and Marta!!) Although we wish it were for more fun reasons, we are humbled to return to where our awesome life together began.

April 13, 2018

Happy Friday the 13th. Recently, I've been asked by several friends why I stopped updating this page. The quick and skinny is because I'm in a holding pattern until after I visit with some physicians at MD Anderson. No one wants to hear my daily routine. So, here's a quick update before my visit to MD Anderson just to keep things "fresh."

I find myself at the close of my day, lying in bed after all prayers have been spoken and lights turned off, letting my mind wander. There are obviously fears and concerns that I have always battled as my mind tries to rest under heavy eyelids. Those fears and concerns aren't necessarily anything new, but rather a bit intensified under recent weeks dealing with immediate issues. As I laid on my back last night, with my hand on the small of my wife's back, an intense sensation of appreciation and love overcame me. If I were to be able to write my life's story before it were to ever occur, to be able to live the life I have lived so far would seem too good to be true. An amazing youth and childhood with a mother that offered her children everything leading to a successful opportunity for happiness followed by fun and formative friendships in high school and college, meeting and marrying one of the largest influences in my life having an eternal impact on all that I am, still, followed by a handful of incredible children all blessed in their own special way that have each taught me lessons in life I never dreamed I'd experience. Those are only a few of the major foundational memories. Granules of minor experiences encompass those and other events in life fill in all the rest bringing me to become the man I am today. Again, I could not have written it any better to this point.

Life chews on each one of us and spits out the finished product at the end. I am continually learning that I only control my response to all the unique pressures and gifts life offers. How I choose to fill myself throughout this journey leads to what comes out when life is heavy and under pressure. For the sake of my soul, my family and all whom I know and love, I pray that my faith, received as a gift, is given as that same continued gift when under strain. My appreciation for all the kind words, prayers, cards and so much more will never be fully stated as it's not possible. Thank you all for your prayers for my family and my health. I will update again after I know more of how this current obstacle will be treated.

Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.

   ~ Saint Teresa of Calcutta

April 5, 2018

Happy Opening Day. Too bad it was a slow game and a loss. Nonetheless, it's great to be back in baseball season. On to the main event...

The past two days have been largely pain-free. It's hard to explain the frequent pain over the past two weeks, but following the biopsy snafu and breathing in general, it's a relief to "feel normal" again like before knowing anything was going on in my mediastinal area. I hope these kind of days continue until after removal.

Perhaps having a lot of the stress and anxiety of calling and coordinating meetings with different surgeons and specialists for my MD Anderson visit was all that was needed to lift a lot of anxiety off my shoulders? I may be too ambitious in wanting to be done with all this, but as a guy that plans things thoroughly, I want to make sure my time in Houston is well-spent and things get done. I'd rather not draw things out over multiple trips. After this trip and all of the consults and tests that are going to occur, I want to leave MD Anderson with a planned timeline for surgery, recovery and ongoing treatments if necessary. I am certain I'll be recovering there for some time following this procedure and am also certain of follow-up visits ensuring I am cured. Let's get all these details knocked out and put a goal for us to drive towards. Once a defined goal exists, I'll sprint towards that finish line with prayerful determination. Then, on to the next challenge in life, whatever that may be.

Finally, the amount of prayers invested into my family, my health, etc., may never be realized until I meet my eternal Father. And though I may never be capable of appropriately thanking everyone who has taken that time, please know that I feel it's all these prayers continually lifting my spirit, giving me endless hope and fervent optimism. I've always believed my faith communities at Holy Infant and St. Alban Roe were exceptional, but the outpouring of love and prayer has blown me away to emotional tears. I am loved by so many and am thankful to have so many people be a part of my faith life. There is no way one could ever repay this much affection, but can only continue sharing His love I've received with everyone I meet in the future.

April 3, 2018

Today I cancelled the PET scan and MRI scheduled through Mercy here in St. Louis. I spent a lot of time with various people from MD Anderson and finally spoke with someone regarding these locally scheduled tests. I was advised that the doctors at MD Anderson would be ordering them again regardless of having them now. I get it. So, since there's no need to double up on these costly scans, I'll just pray for a bit more patience to get things done in one location. 

Today was a bit of a frustrating day trying to get things done. We want to coordinate with various doctors to get everything done in a 3 day visit to Houston, and still have high hopes that this will happen, but it's not going to be firmed up until we meet with our first doctor. He'll have to coordinate meetings with other doctors and hope they can fit us into their schedule while we're in town.

So, with all that today, I'm not sure what else we can do other than wait. I'm in good hands. I need to keep busy the next two weeks to keep my mind off of this wait.

As always, thank you for your continued prayers.

April 2, 2018

Happy Easter Monday. It's been a productive Monday. This morning on my way into the office, I scheduled my PET scan for this Thursday. Though my cardiothoracic surgeon believes that, in my case, the tumor has remained local and not metastasized, I want verification of that claim. The PET scan should offer that verification. So, my Thursday morning will begin with a scan followed by an anxious wait for the scan to be read. Then, on to St. Louis Cardinals Opening Day!