Monday, June 29, 2009

Audrey's First Birthday Party

I can't believe Audrey is one year old already. Where does the time go?



Jen had planned a Tinkerbell party at our nearby park so the kidlets had plenty of room to play.
We woke to an overcast drizzly morning, but were hoping the sky would clear for the 2:00 party.
At 11:00, the sky opened up and the rain soaked the ground. Visions of children playing in the wet grass and sand was not what we had planned. By 1:00, it was still drizzling and the sky threatening. A last minute decision was made to just have it here at the house. Phone calls were made to all the party-goers to announce the switch. We all clicked into high gear to unpack the park goodies to set up in the house. In a mere 20 minutes, the house was ready, all decked out in Tinkerbell decorations. You would have never known the party wasn't planned here all along.

Jen resurrected her cake decorating skills and made a beautiful Tinkerbell cake. We put out an assortment of homemade goodies and drinks. Everyone showed up and it turned out to be a very nice day afterall.

Happy Birthday baby face! We love you very much.

Monday, June 15, 2009

Guinea pig time once again



My Doc asked me last month if I would participate in another CF clinical trial. He knows me and my eager willingness to help find new treatments that make our CF lives healthier, and hopefully, last longer. And who doesn't want to live longer when you've been told you won't.
So sure, let's do it.

This trial is testing a new application of the broad-spectrum antibiotic Ciprofloxacin, commonly known as Cipro. Most people know it as an antibiotic prescribed to treat bacterial infections, such as a Urinary Tract Infection. It is most commonly used as an oral tablet or a solution through an IV. I've used it in several of my IV rounds, usually accompanied by another antibiotic IV. But in the trial, I will be inhaling a powder version directly into my lungs using a newly developed inhaler device, which is also being tested.

The trial will last approximately 3 months, 9 visits spread throughout the time frame. I will be subjected to complete physicals, lung xrays, sputum samples, urine tests, pregnancy tests (ha ha, don't think so), blood tests and pulmonary function testing at every visit. The study Doc and staff will poke, prod and analyze me, charting my results, if any. This is also a blind study, so I will not know if I am actually taking the drug or a placebo. I am randomly assigned, so even the doc doesn't know if I am actually on the drug.

I have mentioned to people that I subject myself to clinical trials. Some are horrified and ask, "why would you do such a thing" or "why subject yourself to so many unnecessary tests and pain." And I respond, "why not, if I don't, who will?"

When you have an incurable, terminal disease, you know down deep that your only new options for medical hope lie in the unknown and untested. We CFers are a tough breed. We withstand so much medical intervention and dangerous, poisonous drugs just to stay healthy. I know many of us are willing to do just about anything to help each other by donating our time and bodies, testing new treatments, hoping for the cure. So what, we are poked a few more times . . . big deal . . . I've had much worse.

Without us, the CF patients, offering our bodies to try new drugs or new applications of old standby drugs, new treatments never make it into the pipeline or mainstream as a viable medical option. I'm proud to be able to have enough lung function left to be able to participate in such important research. It could mean a better chance at life for the just diagnosed child next door.

Wish me luck, I start tomorrow, Tuesday June 16.

Trust me, the most painful part will be fighting the traffic driving into downtown LA. ; )