Monday, July 19, 2010

Cocktails and Steak

Good thing I felt recharged yesterday because the hospital is sucking it all right out of me. I think I previously posted a comment William made, but if I didn't I thought about it, about being puzzled why he always feels sick in the hospital and feels good at home. That's how I feel today. Sick, Sick, Sick of the hospital. It is all too familiar.

This morning began with the clinic and his blood counts were fine. Then I asked more about this chemo cycle and the timing of things as far as counts dropping, recovery, nausea periods, and the harvest. I found out that this chemo cocktail typically takes longer for the blood counts to hit their nadir (low point) and longer to recover. And the next cycle can't start until his counts reach a certain number. So then I started worrying about the timing of the harvest and when my boys all come back and how that fits in with school starting on Aug 9th (so crazy), and his next cycle and scheduling my brother to come help.... So I gave up trying to ask any more probing questions because the answers were the same: we don't know and every child is different. Thanks.

His biopsy went well other than having to wait for 2 hours for our turn. William is eating moderately well. I guess it helps to be fasting until 3pm. But he is still turning his nose up at the hospital food and is requesting I bring back steak tomorrow morning. So I'll be grilling again early tomorrow morning

Round 3 is a new cocktail. His infusion schedule is different than I understood (I'm still learning). Unlike his last 2 cycles, which had chemo on a continuous drip for 72 hours, he receives one new drug for 2 hours, then another new one for 1 hour, then a diuretic and post hydration (extra fluids) for 6 hours, then he's done until the same start time the next day. So that will be a nice change, but he'll still be hooked up to the I.V. for fluids the whole time. The diuretic medication and extra fluids help flush his kidneys so he has to get out of bed quite often--even throughout the night.

When we were brought up to the floor after his biopsy, we discovered that we were in a sharing room. Not my favorite, but I can't be too picky. However, this time it was the quad room-two sharing rooms joined by a large doorway with no door! Oh the joys of sharing with 4 patients. The bathroom was in the other room and the other room was housing a toddler that the nurse said was having temper tantrums all day long. I immediately thought, "If William is going to be nauseated, I'm going to be running into the other room, disrupting them, just to empty and clean the bucket"--among other thoughts. So I hurried and went downstairs to the 5th floor where my friend and veteran hospital mom was with her daughter and got a quick pep talk that I could go ruffle some feathers and request another room. I did. They were full. But a couple hours later they came back and said a child was going home and we could move. Hooray! We are still sharing the room, but the boy and his mother are very nice, he and William get along great, and they are lucky enough to only be here for 1 day.

Today I had weird thoughts that we have bad news looming ahead of us because this past week felt so good. I quickly tried to push that thought away because it brings tears and I have no supporting evidence for it. I know that our family won't be given more than we can handle and we've come a long way in 7 weeks. There are a lot of families that are a lot worse off than us with jobs, finances, insurance, travel distance, support systems. We are very blessed that we have so much support in our lives. And with that reminder, we can handle this week in the hospital and eat steak.


  1. Julie,

    As I read your post today, I thought about a recent hike up the mountain that is in our back yard. It is a good vertical hike and tests my metal....I find that on the most vertical parts of the hike, I cannot look up the trail and keep going. If I look up and see how far it is to go, I lose my stamina. However, if I look down and take that one step at a time and just keep moving, I can keep going and make it to the top where the vista is worth the climb. This isn't advice - you dont' need it, but as I read your great posts, I think of how emotional trials are like physical ones in many ways...

    I am so impressed with you and am so grateful to you for your posts and your faith which inspires me. Love you dearly, Julie!

  2. Wow Julie. You guys are going though a lot. I agree with the post above, Just one step at a time. We love you!

  3. The other boys are now in Idaho!! We are all missing William-4 boys really feels llike someone is missing, and the baseball bedroom will now go to the twins because Clark doesn't want to sleep there alone, and Soren doesn't want to not sleep in his little bed. Knowing how challenging chemo has been to this point, this session sounds more slow and laborious. No fun! Our thoughts and prayers remain with you all. But we love the distraction of counting down the days til the boys see daddy, then mommy and William again. Soren said he also misses his house!

  4. Julie,
    We really enjoyed sharing a room with you and Will. We have had some...questionable roommates in the past and you guys were fantastic. Tyler, although not on his best behavior the whole time, really liked playing the DS with Will. He's never really interacted with any of his other roomies. I wish you strength, courage and NED! Just a little tip..I was reading about Will's love for Star Wars. There is a night nurse named Brad (he usually works on the West side but occasionally the East is blessed with him). He's a Star Wars fanatic! He and Will would have lots to talk about.
    Love and Prayers,
    Kim and Tyler Armstrong