Bells and Whistles

Life's not always full of them, but today we were all about bells ringing.

So far, 2024 has been 9 months of waiting. 9 months of patience. 9 months of feeling meh. 9 months of worry. 9 months of too much parent time when you’re 22. 9 months of head down, get-through-this-doggonit. 2 of the last 9 months were spent in a hospital bed. 34-ish Mondays were spent in a doctor’s office. 17 rounds of chemo to get to today. And on Monday September 23, Jack FINISHED the full treatment plan for Ewing’s.

Yesterday morning Jack rang the bell at Children’s. Dr. Campbell, his PA Tamrah, Nurse Lane, and the incredible nursing and care team gathered to sing him out the door and back to chemo-free life.

If he could have the port removed while he’s careening out of the hospital parking lot to head to Austin he would. That will take a few days to schedule. And he’s resolved to spend a few more days with dear old mom and dad. Jack is so very anxious to return to Austin and rejoin his friends ASAP. Just in time for Texas OU.

What’s next—besides moving into the FIJI house with an air filter and mom’s fingers crossed? Scans every 3 months for the next 2 years to confirm he stays NED. Monthly bloodwork for next few months to ensure his immune system recovering. Most importantly, returning to friends, school and normal life.

In the beginning we said we’d make every effort to find and celebrate joy as this journey unfolded. No lie, it’s pretty difficult to live while you are waiting. But we’ve really tried to embrace every celebration. Charlie’s college graduation. Three beautiful summer weddings of dear friends. A LOT of GOLF. 22nd birthday dinner with lots of friends. Family together time in Wyoming. Catching big fish. Catching little fish. More golf. Dinners with friends. Way more time with Jack than we ever could have hoped for when he went to college. Not what he had in mind, but pretty wonderful for us.

The past 9 months have also delivered some undeniably valuable lessons and insights. Learning to focus and concentrate when you might otherwise be worrying is an important skill. A lot of life is about just putting your head down and moving one foot in front of the other. You can experience joy and sadness at the same time. Even when the lows are low, the highs can be wonderful. Looking too far into the future can be too much. Sometimes thinking about the end of today is just enough future-casting. Sleep is not overrated as a way to speed up time. Reading a good book is also an excellent way to pass the time, unless you’re on chemo, and then you can barely read the EXIT sign. Vitamin D is an invaluable healing agent. Time outside is just plain good for you. Nose hairs are pretty valuable and hoping they return ASAP. Sleeping with your dog really is OK. In fact, it’s very calming to cuddle with an adoring yellow lab. Worrying for someone else isn’t that productive, but sometimes it’s the only thing you can do. Doctors who talk UT football, basketball AND Ewing’s protocol are one in a million. New, yet profoundly deep and meaningful friendships are forged in this cauldron. The friends who texted the positive thoughts, but finished with “please don’t respond” were just what you needed.

Sometimes the best outcome is exactly what happens. And we are humbled and grateful. Grateful Jack had the good sense to say, something isn’t right on December 17. Grateful that friends helped us navigate the hospital and care network to identify and get into the right doctors. Grateful that friends and family checked on us day and night and provided the most profound support (and the best chocolate chip cookies!) we could ever imagine. Grateful to Dr. Campbell, his incredible team of nurses at Children’s; as well as Drs. Lewis, Gorlick and Gill and their teams in Houston for their expertise and care. Grateful that Jack had the fortitude and grace to face this head on with humility and courage, following doctor’s orders (mostly) and taking complete ownership of his recovery. Grateful that his tumor responded so fully to treatment and he can move forward with the highest hopes that this super bad boy Ewing’s is adíos forever—this uninvited guest not welcome in our house ever, ever again. ❤️

Signing off with one last hospital room window from his last long inpatient treatment earlier in September. We were met with Rapunzel. Okay, I have some questions about that. In the chemo ward where everyone’s lost their hair, the princess famous for her impossibly long hair is a good choice??

Stealthy and very talented friends Karen and Lisa snuck in and updated the artwork to something much more appropriate for Jack…