Dear friends,

I’m so touched by the growing number of readers and supporters of our blog and website. Thank you to everyone who has sent in positive words about our trailer. Thanks especially to those who have supported our project by donating money. We are so deeply touched by your generosity.

First, I must say that Andrew, Marc, Nickolas, Yasu, Matt, Ashley, Naomi, Jennifer, Justin, Meghan, and now Dan and Kirsten, have made up our small but powerful US “Dream Team” that have made this project grow into what it has become. Ana and I are simply two people living out our lives, no different from many of our CF/transplant recipient friends; and therefore we cannot receive credit for the beautiful trailer, or the professionalism of this website and online social media portal. I am so impressed and humbled by the efforts of our team, especially Marc, to create such a wonderful trailer. We also can’t wait to see the full film, and I’m sure we’ll blush in modesty as we have for the trailer.

Well, it’s May 1st, and this marks the beginning of Cystic Fibrosis Awareness Month. Today we celebrated the promises of May by walking with over 150 family members at Crissy Field, in San Francisco, California, to raise money for CF research. We joined Team Charlie, and walked in memory of Charlie Stockley, a friend with CF who died tragically because donor lungs did not become available for him on December 24, 2006.  It was sunny and warm, and a beautiful day to celebrate dedicated families coming together with hope and determination to beat CF. There was so much love for Charlie, that it seemed he was still with us.

This day sums up our activities of the month of April. I went to Houston and Utah to speak about Cystic Fibrosis to families and healthcare providers. From April 8-10, I went to Houston for 48 hours and spoke for 4 different groups: first at a breakfast for genetic counseling students at the University of Texas; then an informal sit-down Q & A conversation with the Baylor University Adult CF Center staff, then right away to speak to medical students and providers at the Compassion and the Art of Medicine lecture series ; then the following morning we went to the Texas Children’s Hospital CF Education Day to speak to families where we debuted our newest lecture on finding the tools to fight CF. It was a wonderful way to spread the word about this disease and to remind families that we are not alone.  I spent time with my dear friend Beth S. and her family- the best part of Houston by far. Everyone we met, especially the genetic counseling department staff, Dr Potocki, Dr Cross, Dr Katz, Claire S., Susan Fernbach and Patti Furman!- were so incredibly warm and welcoming. I was treated like royalty and humbled by the kind reception. I was so amazed by the medical clinic/hospital empire in Houston. It seemed endless, like their main industry! The weather was perfect– best time of year– only time of year!– to visit Houston! I enjoyed a visit to my favorite cafeteria in Houston, Cleburne Cafe, as well as two meals with our hosts from the GC program and Dr Cross from Family Medicine. What great food Houston has to offer! Since I had back-t0-back activities, I had no time for any siteseeing or touristing… it was all about relationships on this visit.

Last night I returned from Utah. I spoke at the University of Utah Primary Children’s Medical Center for their Parent’s Night Out Thursday night. I have been wanting to visit Salt Lake City all my life… but was wary of the altitude. Since transplant, I have been enamored with the Mormon Tabernacle choir, which unfortunately was practicing at the same time of my lecture. Too bad– I’ll have to return for the real concert! I arrived 5 hours later than expected on Wednesday night, and crashed at La Quinta at 2am, only to get up to a snowy blizzardy 30 degree day in Salt Lake City. I went to the Mormon Temple Square to appreciate the faith, history and culture of this hardy group of former persecuted pioneers.  I went to see the organ recital in the beautiful Mormon Tabernacle, and then had a tour with two lovely ladies doing mission service from Connecticut and Paraguay. They certainly tried to convince me to be Mormon! The wealth and beauty of the buildings in the square- together with blooming tulips and almond and plum trees covered in snow- was very impressive. After a quick lunch at the Family History Library cafe, I drove in haste in the snow (after getting lost) to Antelope Valley Island State Park at the GREAT SALT LAKE! Amazingly, the snow stopped and it was even a little sunny on the island. It has been one of my dreams to visit this historic body of water. I rubbed my hands in the water, felt the soapy salinity, felt the powdery feeling after my hands dried, and of course I collected water, my tradition with old- colistin bottles. With way too little time, I drove briefly around the island.  I only had 30 minutes- I could’ve spent hours at this wonderful wildlife refuge. But I stopped enough to see a herd of light brown and white antelope galloping across the plains. Also I saw three buffalo in the distance. Such magestic beauty! Also I saw many, many types of birds, all enjoying the sanctuary of this lake. I’ll so glad there is this preserved habitat for the last remaining wildlife of this area; given all the Walmarts and sprawl housing all around Salt Lake City…..

I rushed back for a speech at the CF Parent’s Night Out and made it in time, changing from hiking boots to pumps in the car.  Amazingly, my hosts Katie and Diane said more parents RSVP’ed to this event than any other. We were offered delicious teriyaki dinner (in honor of our Japanese heritage:)) with delicious strawberry shortcake. The tables were all decorated with springtime garden theme treats- like seeds, oreo pudding ’plant cups’, and a nice flower centerpiece. Such immense effort from the CF team!  Then I spoke for a wopping 80 minutes… to wide eyes and open interested parents. They asked a good 6-8 questions afterwards, and I was so touched by the interest. Many said this was the best talk they heard… I’m humbled. All I do is blab about growing up with CF. So it’s just wonderful to know that this storytelling is so helpful and hopeful for parents. I loved to see such dedicated parents who want to do the best for their children. There is so much fear of the unknown, so many complex emotions, so many questions from parents of young CF kids.

That night, I slept well, feeling uplifted by the community bond that I feel whenever I speak with CF parents. In the morning, I drove in the light snowfall south to Big Cottonwood Canyan, along the Wasatch Mountains, and made my way to an area about 10 miles into the canyon, where other cars were parked.  The car thermostat said 27 degrees. I was near Donut Falls Trailhead, but snow was deep and abundant. With my waterproof boots and snowpants, I trekked through the snow, following a ski track, for 3 hours up the mountain which was around 7720 feet. I breathed heavily through the deep snow, peeled off my many layers, and breathed in the fresh mountain snow. My lungs felt so, so, so good. Praise God. I was totally high and happy. This is my favorite thing to do in the world. I wish everyone could experience this bliss… I wish the scenery was better, but the skies were misty and cloudy with snowfall. The snowflakes landed on me with petite flower and star shapes– those little details, and the brevity of their existence, offered such immense beauty.  I felt like I could walk forever; I didn’t feel tired, only hungry(hypoglycemic). So I turned back and hiked down. I only saw 2 other people on the trail- skiers, of course. It was a heaven-like peace.

I had some time to kill so I drove to Park City briefly to check out the town. I’ve been nature-deprived so I had little interest in going to Olympic Village, the expensive slopes (yes, I’ve become my father), and the shops. I bought a sandwich, walked up and down the historic mainstreet, admired the dozens of slopes, feared the overexpanded development in every direction, and then drove hastily back to the airport to get on an earlier flight back to San Francisco. I had seen the mountains, the lake, and was satisfied… and REALLY hope to return to Sundance Film Festival!!! Please cross your fingers for Marc, for our cause!

So all these trips- combined with inspiration, people, and adventure, have one purpose in common- to speak to CF families to give them hope. I’m the luckiest person in the world. Who else can be healthy enough to travel, while speaking about living with illness. I have finally embraced this disease, this life, that was chosen for me. I never wanted it; but I’ve open my arms wide to all the gracious possibilities that have arised because of my disease.

As we celebrate Cystic Fibrosis Awareness month, my hope is that everyone touched by CF can find a path of self-awareness and positive possibilities. Maybe our purpose is higher than if we were born healthy, despite the struggled and pain caused by illness. I hope you find your way.  There are Great Strides happening all over the nation this month; check them out and see what an exciting time it is to have CF!

Well, that’s my May report! Thank you again for CARING so compassionately.

I wish you a healthy happy month ahead. Twelve more days, I’m off to Japan. It’s rest, preparation, and more rest ahead.

Love and hugs to you,  Isa

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