(originally posted by Wendi)
Mark is now in week three of his treatment, and all things being equal, he's doing great. After the adjustments in his medicines last week, and the addition of a one hour iv bolus (fluids by iv), he has been feeling much better. In fact, I think the fluids are helping almost as much as the medicines, since he felt awful Saturday, which was his first day without them. So Saturday we spent most of the day resting, with a"brief" trip to the hospital to get his neupogen shot (this encourages his white blood cells to grow) because his white blood cell count (WBC) and his neutrophil count (ANC) were both low. On Friday I gave him the shot myself with a nurse supervising, thinking we would do the shots at home over the weekend, but our insurance would only cover it if it was done inpatient. It wasn't as hard as I thought it would be. One more new experience.
We had another new experience on Sunday - we caught the last day of the rodeo here in Houston. Jim was a bit disappointed. He was expecting it to be more "authentic"; dusty, tumbleweeds, wide open spaces, cowboys. There were plenty of people wearing cowboy hats, but it was all concrete and crowds. We spent more time in lines than on rides, but overall I think we made good memories. We chose the perfect ride to end the night on. It was called the Crazy Coaster and it was pretty crazy. We were all laughing at the end, partly from the sheer pleasure of being scared half to death!
Waiting for a car to go home put a damper on the day, but it gave us our one uber horror story, so... We've been using uber with pretty much no problems, however everyone had called for a car at the same time that night, and our driver evidently had no idea how to pick up at the rodeo. He spent 90 minutes sitting in traffic and driving in circles around us, and when he finally got within a couple blocks of us, he cancelled on us. The next car only took 10 minutes to get to us, but by then Mark was in tears, he was so exhausted and frustrated. The kids seem to have gotten over that, though, and speak of the day fondly already.
Yesterday, I managed to mess up our schedule, not realizing that if his counts were low on Friday, we have to have labs run and back before they can start his chemo, because if his counts don't come back up, everything goes into a holding pattern until they do. Usually they do the labs right before or after chemo, so when I saw that they had not yet scheduled his chemo Sunday night, but they had scheduled him for labs at 8 in the morning, which would be too early to do his chemo (there can only be 1-4 hours between chemo and radiation), I just skipped it, figuring it would have to be fit in later with the chemo when they got themselves together. Instead, we had to wait for the labs to be run once we got there, so we ended up in the "chair room" (it's literally a room with chairs where the kids sit to get their chemo when they don't have to be there long enough to need a bed - they're comfy chairs) for hours, and his radiation had to be switched from 1:30 to 5. It did give us a nice break in the middle of the day though. We went back to the house, Bella and I went outside for awhile, and Jim and Mark played Super Mario Bros on the Wii.
Today Mark woke up super tired. He is still experiencing numbness in his fingertips, in fact it's spreading a bit, and yesterday his foot was burning. He has had a few stumbles while walking, but I'm not sure if that's a result of his fatigue or if he's starting to lose feeling in his toes and he's just not aware of it yet. His hair has also started to fall out. You can't tell yet, but he can pull out little clumps at a time.
Other than that, he's doing well. Thank you all for the letters, packages, prayers, thoughts and good wishes. I'd like to say we'll get individual thank you cards to everyone, but if we don't, please know we are very, very grateful.
Love and blessings from Houston,
Wendi, Mark, Bella, and Jim