Mar 13, 2020 Latest post:
Jun 23, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We realize a lot has transpired in a short amount of time and feel this will be the best way to keep everyone up to date with Joe's journey. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Joe's Story: Just over one month ago, Joe began experiencing increasing amounts of pain in his upper back and shoulder areas. We really didn't think much of it at first; we chalked it up to him sleeping wrong and us needing a new bed (LOL), or him carrying around 40 pound twin boys...you know...the usual! However, on February 9th, the pain was so much so that it prompted a visit to the Edward Hospital ER. He was also experiencing some tingling and numbing in his fingers, so it needed to get checked out. I had been in Milwaukee for Mia's gymnastics meet with my mom and the girls at the time, so when he told me he couldn't wait for us to get home, I knew something must not be right.
During that first visit to the ER, Joe had some tests run and we were told that he had spinal stenosis and something called radiculopathy (which is comparable to a pinched nerve, or set of nerves). After meeting with his primary care physician, he was given some medication to help manage the pain, was lined up to start physical therapy, and monitor progress. Unfortunately, the pain was not subsiding and his doctor instead recommended he have a CT scan, along with an MRI to take a closer look at things. It was after the MRI that we learned Joe had a fairly large tumor on his spine. His doctor was really quite shocked by the results and knew it was going to take people "above his pay grade" to determine what this was. The tumor sits in the thoracic area of Joe's spine and encompasses the bone in both his T1 and T2 vertebrae, as well as what is called the epidural space of his spine. Imaging also revealed that the tumor lies to the right of his spine, and into the nerve canal, which is what is causing the pain, numbness, and tingling that Joe is experiencing.
From that point, we were referred to a neurosurgeon through Edward Hospital who recommended a lot more testing. They needed to get a closer look at the tumor, which required Joe to repeat the MRI with contrast, as well as a CT scan of the pelvis and above (also with contrast), and a biopsy. Joe was admitted to the hospital that day in order to expedite the tests and try to determine some answers in a more timely fashion. At that point, though the doctors didn't tell us much, I think they knew time was of the essence because of the tingling and numbness he had already been experiencing. So, lucky for us, Joe was bumped the "front of the line" and was able to have all three of those lengthy tests completed in roughly a day and a half. Now we wait for the results...
Prior to being discharged from the hospital, we were told that the MRI and CT scan looked good...as in the tumor had not metastasized/spread to other organs, etc. So that was a huge relief...but we knew we had to wait for the results of the biopsy, so wait is what we did. That wait turned into a good week and a half because the pathologist here was unable to make a confirmed diagnosis and sent it off to Mayo Clinic in Rochester, MN for additional testing. Last week, Friday, the oncologist called Joe and told him Mayo had confirmed a diagnosis--Ewing Sarcoma--a rare and aggressive cancer that is otherwise known as a pediatric cancer. There are roughly 100 cases of Ewing's of the Spine to date.
Rest assured, that's not going to stop us from fighting the hell of out this cancer!!! Yes, it's been a tough road for all of us so far...so many things happening in so little time, which is both good and bad. Bad because our heads are constantly spinning and there's a lot of fear in the unknown, but good because it gives Joe a better chance at getting started with chemo and literally killing this cancer, which is what we need to do. And the doctors believe this can be done which is even better!!
We had an appointment this past Tuesday with the "Captains" of our team--and it's an AMAZING one. We are so blessed to have Dr. Schueller (neurosurgeon), Dr. Kash (oncologist), and Dr. Undevia (Sarcoma specialist from University of Chicago) on board. Not to mention the countless nurses we have met along the way. We can't give a bigger shout out to Edward and their people...they are truly amazing. Joe is very comfortable with our team and because of that, we feel confident about this journey we are about to embark upon. We are praying people and believe in the power of our Lord to help see us through this with strength, faith, hope, and love.
With ALL that said (sorry...but for those of you who know me, know I can't help it! LOL), we cannot tell you how much we appreciate all the love and support you all have already shown us and we really haven't even started yet. From the phone calls, texts, facebook messages, cards, links to resources, food, help with taking care of our kids and keeping our house sane, to all the prayer groups, positive vibes, and countless offerings to help in any way possible...please know, from the bottom of our hearts, how much we love and appreciate you. They say God only gives you what you can handle, and I will tell you...that notion has challenged me a lot throughout this past month. A LOT. But there is no time for dwelling with fear and anxiety. We have to remain strong and believe that Joe can and WILL beat this!!
Thank you all. Please keep all the prayers, positivity, good vibes, whatever you're into, coming!! Much love :))