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Henry’s Story

Welcome to Henry's CaringBridge site. I've created it to keep friends and family updated about Henry's treatment for acute lymphoblastic leukemia. We appreciate your support and words of hope and encouragement during this time when it matters most.

P.S. We hate cancer and hope you feel the same.

Latest Journal Update

Home Day 12

Hi, friends.


Sorry we have been so sparse on updates lately but our new routine has been especially busy for Ryan and me. Being home has been great for Henry and our family but Ryan and I have become part-time nurses and in my case, I'm back to my regular job full-time, so we're staying extremely busy. Henry still has some nagging gastrointestinal issues that are likely caused by chronic Graft Versus Host Disease in his gut. It causes inflammation that prevents him from absorbing nutrients and fluids from the food he eats. He has persistent nausea, vomiting and diarrhea even now. The treatment is long-term IV steroids and time. In the meantime, we are still feeding him through his GJ tube and he gets TPN (IV nutrition) 12 hours each day. We hope that it will improve over time, but until then, we're stuck with all the unpleasant side effects of steroids: mood swings, puffiness and cravings. No fun.


Thank goodness we have help from our families. Grandma Carol is here now taking care of Henry and helping me get the disaster that is my house (and life) organized. We have had so many people reach out and help us since we've been home- I am positively blown away by the generosity and thoughtfulness of our friends and family. I am woefully behind on thank you notes, so please be patient - I'll get there!


Overall, I am still awed by what's happened in the last year. I think it will take months and even years to process all that's happened: the good, bad and ugly. Eight months ago, I would joke about needing counseling for PTSD but I think it is more of a reality than a joke these days. However, I never lose sight of how blessed we are to have Henry home and cancer-free. Through this process, we have gotten to know lots of families whose children are fighting this battle and a number of little ones lost their battle in 2014. It makes me appreciate how fragile and precious our time together is and I feel truly lucky that we got a second chance.


xo-

Misty