Tuesday, August 25, 2009

Peace and Everlasting Gobstoppers

Here we sit. And, sit. And, sit. Just waiting. That seems to be a tremendous part of this trial. Can we endure the waiting? Sarah inhaled her last dose of the magical elixyr this morning, only to begin the marathon sessions of blood drawing, blood pressure getting and pulmonary function testing. But, amidst all the flurry of medical activity, there sits the waiting. And, we sit with it looming over us and becoming part of us.

I'm not complaining. Spending the day with goofy old Sarah is always a lot of fun. We have listened to lots of music and goofed off on the laptops. However, currently, I am blogging on Sarah's as my touchpad mouse died a little earlier. I have also had the opportunity to read and edit a book for my friend, Tom.

Tom has been writing all about his life as it intertwines with meditative practice. Today, I read about how he fought a battle with prostate cancer, recovered from a severed Achille's tendon, and swam out of veritable financial collapse only to meet a car accident resulting in eventual brain surgery. And, he did all of this with grace and faith and courage... And, I have to say that part of me just wants to puke. Don't get me wrong. I am SO in awe. I mean, I want to be Tom when I grow up. I want to nod and smile a spiritual smile, and hold hands with the doctors singing Kum Bah Yah with absolute faith that all is in Divine Order. But, I don't. I snatch at serenity and peace. I grasp at meditative practice. For me, it's like trying to hold onto very fine, dry sand. I can hold it in my hand and it just slips gently through my fingers until I reach desperately down to grab another handful.

Yesterday afternoon, I sat in this same office with my other beautiful, blond daughter, Dan. She has been having real trouble breathing again. So, we skipped over to Mobile to visit our very favorite doctor... He is the indeed the Willy Wonka of medicine. But, even Mr. Wonka can't get the formula right for the Everlasting Gobstopper to make Dan's lung functions improve. Since March, her lung functions have decreased. We have had moments of slight improvement, but in general , the results haven't been lasting. Randy, the girls' dad, has been asking me about taking Dan to University of Alabama at Birmingham (UAB) to let those doctors have a whack at her. So, yesterday, I asked Dr. Sindel (aka Mr. Wonka) what he thought about that idea. He agreed that it might be good to hear another opinion, so he is making the referral, and we will make the journey north. (Not too far north... Afterall, it's still Alabama.) I want Dan to get better. Watching her struggle to breathe is so hard. And, in the midst of this, I sit. I try to "be mindful" like Tom is writing about. "Be in the moment. Be present. Happiness is in the present." And, I get it. I think I get it. And then Dan breathes and it sounds a little like an accordion as she exhales, and I don't get it anymore.

I believe that God is all good and wants only the best for each of his children. I also firmly know that I don't know what is "good" or "bad". So, I understand that accepting what is has be the place of peace for me. But, I can't help the gnawing in my stomach that crops up when I watch Dan or Sarah struggle with the manifestations of CF. I do understand the whole "dying for our sins" concept at this level, though... (Although, I still have great difficulty with the Christian belief that God required this of his son, but that's a topic for a different blog, and I will probably never write it since the Obama/Palin blog struck up such controversy amongst my family.) I just know that if I could die and relieve Dan and Sarah of this disease, I would. If I could take it on myself, I would, gladly. But, that's not my role here. I'm supposed to find a more lasting peace, a stronger sense of courage, and a deeper faith as I sit with the fear whenever my girls face a CF-related trial.

Honestly, while this entry may not read like it, I'm really pretty accepting today. The drug study has been very positive. Tony Cowan, our researcher, is a blessing in how well he handles Sarah's little personality quirks... In fact, everyone at Dr. Sindel's office rallies around to support the girls in whatever way they can. I have listened to Rachel, the nurse, patiently field calls from frantic patients calling all day about the Swine Flu. My family and friends lift us up in prayer support and I do have moments of such peace that flies in the face of all the circumstances that present themselves in our lives. For today, we're all breathing... And, we are grateful.

Wednesday, August 19, 2009

Magical Inhalation

Sarah is enrolled in a drug study for inhaled Levaquin. In fact, she was the last patient in the Phase 2 trial before it goes to FDA approval to move on to Phase 3. (We considered blowing it off since school started, but given the importance of moving the research along, agreed to go through with it.)

All the particulars are topics for a different day... Maybe the next day Sarah is hooked up to I.V. waiting for periodic blood-letting as outlined by the procedures in this trial. I just haven't had much time for my quirky, bloggy updates... But, preliminary results show a marked improvement in lung function after only a week on inhaled Levaquin. Large airway functions increased by 10%, while small airway functions increased by 18%. And, these improvements were after Sarah developed a cold.

Dan did not qualify for the study because she was sick this summer and had to be on I.V. antibiotics. However, she is snuggling up REALLY close to her sister as she does these treatments in the hopes that some of this magical elixir wafts her way.