Archives for January 2009
To the Next Trial
Published on 31 Jan 2009 at 6:39 pm.
11 Comments.
1045 views.
As Nurse Jolie pointed out, we’re done with the twice-a-week-in-Houston trial. I can’t say I’m too sad about it. Just two weeks of that chaos was enough fun for me. But, no time to rest. We hit the ground running and have already signed up for another. Unfortunately, it’s back at MD Anderson but we [...]
Update
Published on 28 Jan 2009 at 11:17 pm.
15 Comments.
1065 views.
Hello, everyone. This is Nurse Jolie filling in for Chris for this update. I will try and just stick to the facts.
Today’s Saga
Published on 26 Jan 2009 at 2:51 pm.
12 Comments.
930 views.
We were supposed to be in Houston getting treatment right now. Ah, but we’re not. Here’s the true tale of helicopters, weather, purchased (and then refunded) airline tickets, and elevated liver enzymes.
Today’s Nail biter
Published on 23 Jan 2009 at 11:50 am.
6 Comments.
795 views.
Yesterday MD Anderson refused Maggie’s treatment. Apparently for the second time this week a liver enzyme has been out of whack causing some concern. She’ll return on Monday (without Angel Flights – another story) for another test and, if her enzyme hasn’t righted itself then we’ll likely be kicked out of this study.
And Back
Published on 20 Jan 2009 at 10:23 pm.
13 Comments.
816 views.
Maggie is back and doing fine. MD Anderson delayed her departure until around 2:30PM. Fortunately, the Angel Flight crew was none too bothered by the delay. Her special flight was held until around 3:15PM and touched down in Austin around 4:45PM. Despite all my worry, they seemed to roll with it all nicely. Thank goodness. [...]
To Houston
Published on 20 Jan 2009 at 11:02 am.
10 Comments.
689 views.
Maggie told me yesterday that with some of my writing on this blog I tend to have a flare for the dramatic. The words shot like ice daggers from her lips into my ears, splitting my skull on their way to my heart. As shame and passion overcame my soul, I rended my shirt, crying [...]
Thank you!
Published on 16 Jan 2009 at 11:03 am.
6 Comments.
788 views.
Thank you everyone for your kind and generous donations toward helping us with our flying challenges. Maggie and I are very touched by your generosity. Gosh, thank you. But here’s a funny twist. Gratitude aside, please hold off on your gifts. While every single one is very, very appreciated, we think they may be unnecessary [...]
Blah, blah
Published on 15 Jan 2009 at 1:45 am.
13 Comments.
807 views.
I truly, truly wish I had some good news to report. I’m so tired of being the sad sack, the fun suck, the wet blanket. But I have nothing. Instead, I have cold, hard reality. Maggie has been suffering from increased pain over the last few days. We were hoping that it was a phase [...]
Clinical Trials
Published on 12 Jan 2009 at 6:06 pm.
11 Comments.
716 views.
We are at MD Anderson for our next clinical trial, BIIB028. Maggie’s fine. It’s been about the 5th worst hospital experience we’ve had but it still beats being here for a week. We’re just waiting out our observation time until we can go home.
New Pain
Published on 7 Jan 2009 at 7:18 pm.
7 Comments.
875 views.
Yesterday morning Maggie’s chest started bothering her. Last night, it was substantially worse. This morning, the painful trend continued pushing us to call Nurse Mary for counsel. The pain is sharp, painful, and amplified by any movement that tenses her stomach muscles like sitting, coughing and, the worst of all, vomiting.