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 and Dr. Loukas think this is the best one available right now.  It comes with different challenges but the travel requirements are much more reasonable. Continue reading To the Next Trial →

Hello, everyone.  This is Nurse Jolie filling in for Chris for this update.  I will try and just stick to the facts.  Continue reading Update →

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. Continue reading Today’s Saga →

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. Continue reading Today’s Nail biter →

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.  It’s so nice to find a friendly sponge that can calmly absorb a little of the havoc that’s being thrown at us. Thank goodness for the Angel Flight volunteers. Continue reading And Back →

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 aloud “Why?” as the lashing my lover had bestowed found its final resting place, deep in my psyche only to be uncovered years later by a psychiatrist, paid well for her mental spelunking.  Hmmm… Maybe Maggie’s right. Continue reading To Houston →

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 for right now.  The volunteer agency Angel Flights is living up to their name.  They have arranged for volunteer pilots to fly Maggie to and from Houston next week at no cost to us.  They are even working on covering ground transportation in Houston so that she can get to and from the airport.  Crazy cool.  Of course, there’re some caveats. Continue reading Thank you! →

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 she was going through.  But it keeps getting worse.  Her nausea has increased substantially so that she’s vomiting many times per day.  Food staying down has become a real problem.  And, as if things aren’t challenging enough, she’s caught a cold. Continue reading Blah, blah →

We are at MD Anderson for our next clinical trial, BIIB028.  Maggie’s fine.  It’s been about the 5^th 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. Continue reading Clinical Trials →

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. Continue reading New Pain →