Better luck next time?

The good news is I don't have to worry about having a stem cell donor for a while. The bad news is I don't have to worry about having a stem cell donor because I'm not in remission. Dr. Bowles broke the news yesterday that I am still at 10 percent leukemia cells. So the second round of chemo, the FLAG-IDA protocol, did nothing for me. In the next breath he told me that I would be transferred to the University of Colorado hospital so I can participate in a clinical trial. The goal is still remission, followed by a stem cell transplant.

I was surprised. I was really sure, because the first round had worked so well, the second would surely knock out the last of the bad guys. But I was also sure one of my brothers would be a match for me. And I was also sure that I didn't have leukemia to begin with.

Over the next few hours, my parents came down to the hospital and packed up my entire room, which was no small task. All my clothes, bedding, electronics, coloring books, wigs, toys, teddy bears, food, mini-fridge, piles of lotion, lava lamp, artwork, and dozens of cards were getting hauled out when I was whisked away in an ambulance for the 20 minute drive over to the Anschutz campus. This was my first time in any kind of vehicle since I was admitted to the VA hospital on August 21.

My transport

I had a lot of testing to go through upon admission. Urine sample, stool sample, blood cultures, chest CT scan, echocardiogram, and yet another bone marrow biopsy. Blood cultures are getting harder and harder. This one took at least 4 tries, two people, a heating pad, and two big bruises on my hand and elbow. I guess it's a good thing they got that stool sample, because as it turns out, I have c. diff. Yay. I was surrounded by a few c. diff patients at the VA, and I was also on a lot of antibiotics for a long time. And of course, I have no immune system. So it was just a matter of time.

The university hospital is bigger and newer than the old VA hospital. Everything is color coordinated, the floors are shiny, I order the food I want from a fairly extensive menu, and I have an unimpeded view of the Denver Tech Center and Pikes Peak from my room on the eleventh floor. But I'm still in unfamiliar surroundings, and I cried so much in a single day my eyelids got so swollen I thought they were infected.

My new view

My new room

My treatment plan just turned on a dime. Actually, the new plan is still TBD. Still with Seattle as the goal, but which study I will be enrolled in and what that will look like is still unknown. Which is exciting, right?