Dear friends and supporters:
Thank you for reading our blog once again.It has been a very hectic few weeks. We go from one talk to another, fortunately locally. Our minds are frantic, as we struggle with saying no to so many requests. We are trying to support the film production efforts while balancing our health, exercise, doctors visits, and other activities. Ana and I complain often about being behind in responding to our emails, and forgive us if we’ve ‘stood you up’. Ana is hectic planning her wedding, which is only 3 weeks from now! My house is a disaster; the dog is slightly neglected, but I’m feeling well, thankfully and continuously grateful for this incredible life.
It is mid-May, and the day has finally arrived for Mom, Ana and me to go to Japan tomorrow! The Japan Rail Passes are bought, the inter-Japan flights are confirmed, the hotel, etc. are all booked. Meds are packed, including several extra weeks in case the volcano strands us in Japan. And we’re looking forward to eating ramen! And anpan! And curry-rice! And everything Japanese!
Thanks to the support of Naomi, Adachi-san, Ohkubo-san, and our new friends in Takamatsu (Dr Kiyomoto and Dr Tokuda of the International Exchange Committee at Kagawa Medical School), we will be making 4 speeches in 3 cities starting Saturday, May 15. We also have an amazing American Dream Team that has been organizing so many events while we’re going to be in Japan, including a fundraiser in Ohio and upcoming event in Los Angeles in June!
First, Ana and I will arrive in Tokyo– just like ol’ times. We’ll meet Adachi-san, who is a father of a CF child, and the chairman of the Committee to Enable CF Treatment. He has invited Ana, my mother, and me to meet several other CF parents to visit the Ministry of Health at the Diet (Japanese Parliament) on May 14. We will be speaking with Upper House member Ms. Okazaki Tomiko, who is a chairperson of the Intractable Disease Committee in the president’s party. She has supported the CF lobbying efforts. I’m humbled for this opportunity to speak, with my mother’s translation and guidance, to those who need to hear what it’s really like to live with CF! And to offer stories of people who do so well in America with the right medications and treatment.
On May 15, we will speak at the “Bridge to Life” festival, a donor ceremony for Japanese donor families. In 2009 there were only 6 brain dead donors and about 170 donation after cardiac death donors. That’s nothing for a country of 140 million. But the families, small in number, still gave life, and went against the status quo. Many of them have been publically criticized for donating life… It will be very emotional to address these families!
Then we travel to Takamatsu, the city where Ana and I lived back in 1994-95 with Stanford’s Volunteers in Asia program. We can’t wait to reunite with several friends and former students! We will be speaking on Monday May 17, in the morning and afternoon, as well as possibly make a visit to the Governor of the Kagawa Prefecture and the local Japan Organ Transplant Network office to greet, or ‘goaisatsu’. I look forward to walking around my favorite downtown, visiting the awesome shotengai (shopping malls), and reminiscing at Ritsurin Park, a beautiful place that gave us much respite and hope during our cold, sick year in Japan. I can honestly say that Ana and I never, ever, ever imagined we’d be back in Takamatsu, especially 16 years later. This experience is a testimony that one can never imagine how life will unfold. We can never say never!
I also find destiny is very much part of our plans. Adachi-san says there are many angels involved in our Japan trips. I can’t agree more. When debating about whether we could fit Takamatsu into our calendar, we heard there is a CF family who lives there with a 3 year old child , whose parents really want to meet us. So we couldn’t deny that opportunity. We’re looking forward to meeting more “family”.
After Takamatsu we’ll head north to Sendai on May 18, using a roundabout long journey on Japan Rail and Itami (Osaka National Airport) to Sendai, in Northern Japan. Wish us luck that we can make all our connections… and fit all our crap into our suitcases tomorrow morning. There is so much medicine and omiage, or gifts… the classic Japanese habit of ours to always bring craploads of gifts. I feel naked if I don’t give gifts. Just ask Andrew. Drives him nuts.
In Sendai we join Adachi-san again as well as a few other CF parents, for the Charity Concert featuring jazz musician Mits. Sakakibara, trained in the US at Berklee School of Music. I hope they raise lots of money for the Japanese CF Committee! they desperately need funding for their lobbying efforts and education for families. We will participate in an interview with him, hopefully in more English than Japanese. Then I will break out my bagpipes, God willing, and play two tunes. I hope and pray they are in good shape to be playable.
Tonight I went to band practice one last time, to have my teacher fix the reeds, and now it’s on my desk drying out to pack tomorrow. I have piles of shit strewn out on the bed, waiting for the pipes to go in the suitcase first and then pipe clothes around for padding. This week I perseverated on what color top I needed to go with spring-colored scarves, instead of actually studying Japanese. So I hope we can manage the speeches. Luckily Mom will be our crutch.
After Sendai we take the bullet train straight to Narita International Airport and head home. Three days after I get home I have a piping parade and then go to Chicago for a UNOS meeting. Lord help both of us stay well, especially Ana as she gets ready for her wedding.
The best news I have to share is this email, from Adachi-san last week:
“Dear Anabel-san, Isabel-san,Today, we got an excellent news. The Ministry of Health, Labor and Welfare has just released the results of deliberations that the four medicines (Creon, Pulmozyme, TOBI, Colistin) are approved as medically requisite ones. This is historic, it’s landmark for CF in Japan!!! None of this would have been possible without you.”
I am humbled by the dozens and hundreds of people who have advocated for CF care in Japan, and their efforts are paying off. Ana and I simply sat at our computers and wrote emails, and I blush at Adachi-san’s accolades.
While this doesn’t mean the drugs are approved, it does mean the government is acknowledging there is a medical need for CF treatment in Japan, and will assist to encourage makers of CF drugs to invest in selling their product in a country with few CF patients. I implore Genentech (Roche), Novartis, Solvay and all the CF drug companies that do such a good job marketing their drugs in America, to be merciful in their profit needs and think of the power of their humanitarian action for the Japanese. I am concerned about their next steps, but I hope and pray the Committee to Enable CF Treatment will be able to pressure and incentivize these companies.
I end this blog by sharing my sadness of the passing of our friend Emily H, a vibrant, beautiful, positive young woman who was our former CF camp camper in Los Angeles. This girl had the sweetest, brightest smile and was a geniunely GOOD person. Emily recently became the spokesperson for Ambry’s CF Surf Camp, and we surfed together twice last year. CF is such a horrible, relentless, unfair disease, that the healthy-appearing Emily simply crashed a few months ago and fought a hard battle on the ventilator for several months. She went up and down, and went through such incredible suffering. She was never stable enough to be considered for a transplant. My heart aches at her tragic sudden loss.
To see her wonderful words of wisdom, check out http://www.cfvoice.com/info/adults/videos/emily-video.jsp
Emily’s loss reminds me of what a miracle it is to travel to Japan with my mother, a few days after Mother’s Day, and celebrate still being together. This will be such a special bonding journey for the three of us. No film crew, no boys, just us and our busy schedule of activities. I wish all daughters could be with their mothers on Mother’s Day, and to have opportunities like we have.
Well, I end this blog, and will write again from the other side of the Pacific. Please breathe deeply. Take care, and thank you for reading.
Sayonara, mata ne (Good bye, see you later!), Isa