Caleb Update 1/12/24

Yesterday, January 11th, was this amazing kids seventh birthday!!! How on earth did that happen? In addition to celebrating 7 glorious years on this planet, we are so happy to let everybody know that we are officially discharged from the hospital and home together! We’ve been home for a week now and are settling into our new normal. Caleb still has a long road of recovery ahead of him. He still is on tube feeds and a bunch of meds to help manage his symptoms, but things are slowly getting better. 

We were able to get home late last Friday and had a fun snow day, celebrated Christmas, made Christmas dinner, and overall started making up for a lot of lost time together as a family.

We continue to go to clinic twice a week and are working diligently to make sure Caleb feels as good as he can so he can continue getting stronger. Both Mike and I return to work next week, but we are fortunate enough to be able to work remotely and continue to stay in our germ-free bubble (or as close to germ-free as we can be).

It feels so great to be back home and sleeping in our beds, but we remain consistently aware both of how quickly things can change and we try to focus on taking things one day at a time. As happy as we are to be discharged, we were given the very sad news that the daughter of a family we became close with while we were in the hospital passed away on the same day that we were told we could go home. Her transplant day was one day after Caleb’s. She and Caleb both love The Avengers and the Eagles and this was the link that sparked our initial conversations with her father. We are so grateful our paths crossed as the cancer journey can be so isolating but finding people with shared experiences makes all the difference. This disease is brutal and unforgiving and despite medical advances, many young people die every day before they even have a chance to begin living their lives. There just are no words.

Our leukemia journey is far from over and I honestly don’t know if Mike and I will ever really breathe easy again, but we remain hopeful and so grateful to be at home and together under one roof once again!

Sending love and gratitude for everyone who has, and who continues to support us through this process. We are forever thankful!

Colleen and Mike