Busy Livin’

It has been SO long that we have been busy survivin’. Now, I feel like, although still having to be extremely cautious, we have turned the corner and are starting to be busy livin’.

We still go to Children’s weekly for 8 gazillion tests and extremely thorough check-ups with Dr. Kohler. I LOVE that man- Dr.Kohler that is. He has taken such paramount care of Luke. He is nothing short of brilliant, an expert in all things BMT, he LISTENS. He checks Luke from head to toe, inside out, over and over and over again weekly and I’m sure daily as test results roll in throughout each week. I almost…almost have Dr. Kohler cracked with my shenanigans and quirky random questions. Luke has perfected his mom eye roll. He shows me at every appointment. I’m proud!

100 days post transplant is August 3rd. Although we are still in the middle of an extremely long quadruple marathon, 100 days is a significant day statistically on the medical side. Well, and on the emotional side. 100 days has been a goal since this shit show all began. There is statistically lower chances of major life threatening complications, although we know we need/will get to 6 months, 1 year, 5 years, 10 years, and on. Luke started tapering off one of his major immunosuppressant (anti-rejection) meds a few weeks ago and that will be complete on July 28th. He has many others he will go off of soon after that. That is when his “new” immunity will really be put to the test but that allows his body to build its own defense cells. Then he will start being re-vaccinated for everything. Although my cells carry with them protection from my own vaccinations, Luke will start all over again with those. That will also put his body through more tests. As of today, Luke hasn’t had to take an anti-nausea pill in about 5 days. That’s something. He gets stronger every week, his stamina is building, his smiles are wider, and he continues to have a smiling heart.

It just so happens that at 100 days, Luke is allowed to go more than an hour away from Children’s Hospital Denver, as long as he is close to a hospital that could get him IV antibiotics quickly and fly him back to Denver. We will be celebrating allllllll weekend in the mountains! Well, all month and for years to come, we will be celebrating.

Luke will start KU online classes from home this fall. He will not be able to go back to Lawrence for a bit. As soon as he gets clearance to go, I will move him back to Lawrence, even if it is only for a couple of weeks in December, so he can be surrounded by his college family. I always joked (sort of joked, I was serious in my heart) that I would just go back to college with my boys (the college part, not the school part). Little did I know my “cells” would indeed be going back to college! That wasn’t exactly the plan I had, but ok, I’ll roll with it.

Today we are at Children’s for the start of his 100 day tests. MORE tests than the weekly gazillion. Lung chamber tests and ECG of his heart. Followed by full physical and rounds of blood tests. On Monday Luke will have surgery in the OR for a bone marrow biopsy, spinal tap, aspirate, AND TO REMOVE HIS BROVIAC! HOORAY! This will allow him to take a bath, swim, and prepare for a slip n slide baseball obstacle course I am working on! He won’t have the daily upkeep, taping, flushing, covering and sterile dressing and cap changes. HOORAY! These tests will only confirm that his transplant is still holding strong and there is still NO evidence of disease.

We continue to be so thankful for the love, prayers and encouragement as we move to this next phase of life. I know I am the luckiest girl in the universe being surrounded and uplifted by so many people. Thank you from the tips of my toes to the top of my head, inside out. My heart is bursting with gratitude.

Buckets of livin’ and laughter!

Suz