LJ’s last scan showed his tumor increased by 13%. The time following news like that is always odd. A mix of pain because the monster just won’t get out of my baby’s head and joy because LJ is completely symptom free. Well kinda. For a week or so after the scan LJ was showing symptoms, […]Read More RSV and Rollerskating!
There really is no easy way of explaining how I felt the weeks leading up to LJ’s two year post diagnosis mark. Sometimes I can only relate our life to being stuck on a rollercoaster that is making you sick but you never want the ride to stop. We were coming off a “bad scan” so […]Read More But God,
JANUARY 2020 After a whirlwind of a month in December I was really looking forward to some down time in January! Both our moms were coming to visit but other than that we didn’t have any major plans. We celebrated New Years Eve on the 1st because our kids lost their minds about 9pm waiting […]Read More Happy New Year?
We have been so lucky to spend the time surrounding LJ’s MRI’s at the Great Wolf Lodge. This time we were able to check in the night before giving us time to unwind before he had scans the next morning. I use the term unwind very lightly because regardless where you are in the world […]Read More 13%
December 2019 December had finally arrived. “The most wonderful time of the year” was here and we were a solid party of four. Looking back on it I still can’t believe we have celebrated two holiday seasons with a DIPG diagnosis. When I tell people LJ was given 9-12 months they usually look at him […]Read More Christmastime Chaos
I written a lot about scananxiety that shows itself around cancer diagnosis related scans but what about all the time that isn’t around scans that is filled with anxiety? I am a psychology major and very distinctively remember learning about panic and anxiety disorders. Truthfully, I thought these were “make believe” disorders, something a patient […]Read More Anxiety.
September 2019 Once you become a cancer family your world kind of slows down then it can rapidly speed up as you decide what your role will be in fighting the battle of whatever type of cancer you are up against. When we were leaving the hospital on D-day, the day LJ was diagnosed, the […]Read More Cancer Family
AUGUST 2019 August started out with one of LJ’s biweekly blood draws at the Liberty Campus of Cincinnati Children’s Hospital. It was the best blood draw yet. LJ sat on my lap, just me, a nurse, and of course nurse Emmaleigh were in the room, his port was accessed effortlessly while he chatted with us. […]Read More Normalcy
July 2019 The summer kept chugging along and we were really enjoying our time at a weekly meetup with other homeschoolers called Wild + Free. While there a woman asked me what was LJ’s prognosis (not randomly but I was telling her about why we moved to Ohio) and the best way I could explain […]Read More 2 TDYs and 1 Trip
June 2019 June was a whole entire month that we did not leave the state of Ohio. We did not even venture into Kentucky. This is why we asked for humanitarian orders from Alaska. We needed some stability and man, not unpacking suitcases, well except for that last weekend, feel SO good. Just cooking meals, […]Read More A Month at Home!