Mixed Emotions

We had a wonderful weekend. Trip had the biggest following at Hike for a Cure. 25 people hiked in honor of him. Over $16,000 was raised for histiocytosis research. Dr. McClain, Trip’s specialist in Houston, was there and spoke about his research and what he hopes to have happen with “Spit for a Cure” which is genetic testing of the families facing hisitocytosis. The weekend was emotional and uplifting. It was humbling to see how much support we have and comforting to be in the presence of others families in the middle of treatment or who have already experienced the success we are so desperately hoping for. We heard stories of triumph and hope and courage. Those remind me to hang on…

… when I feel so crummy because of his MRI results. I’m so sick of words like “minimal improvement” and “subtle change” and “stable disease” and “persistent mass”. I’m ready for words like “large improvement” and “great change” and “no active disease”. When do we get those? I’m tired of waiting and tired of chemo. I’m tired of doctors being satisfied with results that only show the disease as stable. I get it’s good that the disease isn’t growing, but how much of this do we – does Trip – have to take before it’s gone forever? So, with that thinking, it should be needless to say that I’ve had a huge pity party for myself. I wanted to be able to write this entry with a more positive tone, but right now I just need to feel sorry for myself and get it out. Hopefully I’ll feel better and have more perspective after. Maybe I should clean something.

We have wonderful friends who support us with their whole hearts – even the young ones. My precious, generous godson, Cole, walked up to me at the hike with a handful of his saved dollar bills and told me that he wanted to give it for Trip’s disease. I immediately broke down in tears hugging him. Another little friend, Tristyn, told her mom when she was getting tucked into bed after the hike, “Mommy, this was such a wonderful day.” And yet, another little friend, Dylan, jumped into bed last night with Trip’s Histio Warrior sticker on and said, “I love T Ripper!” Those are things that bring me to a puddle of mush but things I will remember forever.