May / June Family News
- Bad: Cancer is Spreading
- Good: Ella Prepping for University
- Good: Mia, Mason and Brenden Soccer
- Good: Family Dinners are Evolving
- Note: The picture is of the kids at the top of Rag Top Mountain in Shenandoah NP in March.
A Hard Shadow on the Family Table
So much to update across the spectrum of our family! Grab a cup of coffee for a quick catch-up around the table. God is building our faith through trials but also opening the doors of opportunity. First, the hard news:
Last week was rough. On Tuesday, I had PET and CT scans, and on Wednesday, the results were disappointing: The tumors in my lungs were slightly bigger by a millimeter, but more concerning was that there were new areas in my liver where cancer was spreading, and both my hip and right 5th rib were more active. This part about my rib was no surprise – I began having pain in my side some weeks ago. For the past 3 years, while I have felt various levels of discomfort, it was always a result of treatment, or a procedure, or some other side effect. But now, the pain I now feel each day in my side is a direct result of the cancer. It’s mostly manageable, and varies from day to day, but it’s a clear sign of progression. All of this turned out to be not just a read flag, but a stop sign. My Oncologist at Sara Cannon said that with the results of clear progression, it’s likely time to end my trial of CUSP-06 and consider alternative treatments (Radiation, other chemotherapy or immunotherapy.) There is no clear other trial drug that she could recommend.
Further, my iron levels and hemoglobin were so low that we could not proceed with treatment even on this past Wednesday, and I had to be scheduled to receive 2 units of blood on Friday just to get the base level up to avoid organ damage. I am also scheduled to get an iron infusion early Monday morning. I am hoping that I can still get another full treatment of CUSP-06 on this Wednesday, but that needs to be confirmed.
This upcoming week, we are meeting with our chief oncologist to circle the wagons and come up with a new treatment plan. This has been an unsettling week. For the first time in 3 years, we don’t have a clear path forward. There are still several approaches, but none of them are obvious. Please pray for wise choices, good research by our care team to take the right approach, and success in managing the new angle of some continual level of discomfort. The uncertainty has caused no little concern for us all.
This will be financially challenging for the rest of the year as well. While the trial covered many costs of treatment, we are still at the end of my FSA for the year, and a few costly repairs to vehicles earlier this year as well as a repair to the home AC have kept us from creating any real cushion. And even thought BCBS said I was approved, Vanderbilt still insists that I owe $1700 for my Histotripsy 8 months ago. Ugh. I am working on some ideas to come up with some extra income, but – Well please pray for us in this area as well. (GoFundMe)
Now, for the good news, and there is a lot to celebrate. We are preparing for Ella to attend Samford University this fall. We have been navigating all the ways to prepare Ella for the full university experience, and she is signed up for classes and plans to participate in Air Force ROTC as well. We are excited for Ella to start this next stage of her life.
Both Ella and Mia had the opportunity to serve on an international mission trip earlier this summer and had an extraordinary experience in a very different culture. They have also continued to work their jobs this summer gaining great experience and some important financial resources. Even Mason has started doing yard work around the neighborhood and is earning his first wages (and bills. He owes me for lawn mower gas!…)
Colin has sprouted up and is helping with more challenging chores. His voice has dropped enough that our dog does not always recognize his voice from another room and barks at him until he sees that it’s just Colin.
Brenden has picked up a couple of new hobbies this summer and thrown his whole self into them: coin collecting and model building. Using my dad’s coin collection, he has learned all about mint marks and different kinds of coins from many different countries. He has also been diligently building a detailed helicopter model.
Mia, Mason, and Brenden are also starting to train for this fall soccer with LK United. Mason and Brenden had a great season this past spring with the team, so much so that Mia was up for jumping back into the sport. LK United has been that great balance of competitive play, character building coaching, and encouraging team camaraderie. It’s very often hard to find sports teams where the schedule is of the hook, or the competitive drive is so fierce that it’s ugly. This team just seems to hit the sweet spot of the best of sports. Looking forward to the fall!
Closer to home, I have noticed something has clicked in many of our dinners together: the conversations are evolving. There is still lots of nonsense and occasional bickering that kids bring to the table in bigger families, but now it’s being layered in with discussions of music, movies, culture, headlines and spiritual perspectives. Francis Schaeffer and Thomas Aquinas are referenced along with Batman, Vader, and Hail Mary. It’s unpredictable, sometimes frustrating, occasionally hilarious, profound, and sweetly richer.
As we continue to live and grow as a family, I find great satisfaction with the people I live with. I have a wife that has worked with great effort to support, love, guide and discipline a set of exceptional, vibrant, unique, creative, opinionated young men and women that are our children. I love them all SO MUCH, and I love that they all have this passion for life as well. Most of all, they all seem to have found a sincere faith in God that is also uniquely their own – each at their own stage with their own questions.
I pray that each of you get to have the experience of sitting around a table with a family that feels secure enough to voice their opinions, but also secure enough to challenge each other’s ideas, but humble enough to still listen even in disagreement, while sharing a foundation of faith and love. If your missing it, keep that cup of coffee and join us at our table. You would find yourself welcome here.