Exactly two years ago Justin and I prepared to spend our 4th of July in the Cleveland Clinic Hospital. Our boys were back home being loved on by friends and family while Justin was enduring test after test to confirm all that he had been diagnosed with. Today we sit in the Cleveland Airport heading home and feeling grateful that we will spend the 4th of July in Boerne with our boys.
This trip was different than the trips of the past. Our other visits to the Cleveland Clinic always ended in Justin being admitted, a new diagnosis, an infection found, a plan changed etc. I would sit by and watch as teams and teams of doctors would fill his room and sit in wonder as they tried to figure him out. We sat in anticipation that one of these brilliant doctors would be the doctor that would be able to "fix" him. None of them did.
Two years later, we rolled him into the Cleveland Clinic in his wheelchair and jaws dropped. These doctors are the real deal. They write the books that our doctors back home learn from. They were genuinely surprised to see that things had worsened and that Justin was still alive. His doctors gathered together and examined him head to toe and rambled their doctor talk (which I wrote down and then had to google later) back and forth. And then it came time for our jaws to drop. The conclusion was that "Justin, you are alive BY GOD'S GRACE" Wow. White blood cells are what defends your body from infection. Justin's two main treatments are Rituxan which is a chemo infusion and Immunosuppressant medications (which keep his body from rejecting his organs). His body is continuously attacking itself and basically no part of his internal self is safe...against itself. Sorry if I lost you in that mumbo jumbo. Anyways, the combination of his treatment plan wipes out both his T cells and his B cells (both white blood cells). This makes Justin what the doctors referred to as "a ticking time bomb for infection"...pretty comforting, not. He literally has no immune system plus he has a living fungus in his lungs (aspergillosis). The medications he takes could mask an infection until it was basically too late. This is why even the best doctors around can recognize that he is here only by the GRACE OF GOD.
The doctors were able to explain some things to us and provide some info on why certain treatments have not worked in the past. They agreed that his doctors in SA are doing the best they can do. They did a ton of labs and want to go over all of that thoroughly before they make any adjustments to the treatment plan. Other than a few minor changes, we are pretty much already on track for the best possible treatment plan for Justin right now.
IVIG (which starts Monday) will really help in replenishing those B cells which will provide at least some protection over his body for infection. He will do this once every month over 3 or 4 days. It does not make him feel well during and after, but it will be worth it in the long run.
So, there is that. I feel like now more than ever we have seen the grandiosity of God's grace. James 1:24 tells us to count it ALL joy. We know that God uses ordinary people to accomplish extraordinary things. He did it over and over again in the Bible. He has a great plan for our little family...I just know it. We know that every good and perfect thing comes from above and we know that his enormous gift of grace is one of those very perfect things. This is no doubt a lot to handle. For all of us, but especially for Justin. We can't see the final chapter of His big and perfect plan, but we do know that is will be good. The ending to this WILL be good. This man has been transformed and this family will never be the same. Life is short, we know this, but eternity is well...forever.
Bringing Bryce on this trip was hard, but such a great choice. It was hard to have him there hearing first hand from doctors that they can't "fix" his daddy, but it was a great distraction and reminded us to have some fun too. We had to have some hard discussions, including one where Bryce prayed that his daddy would be able to meet his kids when he grows up and gets married one day. But, His mighty and always sufficient grace kept the discouragement at bay.
We did the one and only Cleveland tourist attraction....the Rock and Roll Hall of Fame! It was fun and Bryce had a blast. Thanks for the prayer, ya'll.