(I am Robin Modlin, a friend of Ana, Isa and Andrew for almost 20 years. I was invited to go on this trip to Japan to support my friends in their endeavor to raise awareness about organ donation, transplant and cystic fibrosis. I am also mother of another friend of theirs, 28 year old, Anna, who lives with cystic fibrosis and the hope of one day having a successful lung transplant.)
Day 7
The train continued to travel to Sendai arriving in a heavy rain. We had to get off of the train very quickly with all of us, and the tremendous amount of baggage this entourage carries. It was done in record time with preplanning 20 minutes before arrival. Applause broke out when the final bag was placed onto the station floor. The Sendai station was connected to our hotel so that we did not have to travel by cab. It was just a bit tricky finding a way to maneuver with a few of the oversize equipment bags. While we walked through I intently tried to read and understand signs as the next day it would be up to me alone to get myself back to Tokyo. That is an adventure I am sure that I will write about tomorrow.
The train was about 40 minutes late arriving as we had to stop for typhoon wind along the way. Poor Mr Adachi must have been getting impatient waiting for us but there he was dressed in a beige suit, waving and waiting at the ticket exit. Mr. Adachi was our gracious host. He is the father of a 20 year old young man with CF. We came to Sendai to be a part of a benefit concert for cystic fibrosis, the first and only of its kind in Japan.
We could not check in yet and had to leave our bags at the reception desk. Ana, Isa, Andrew, Naomi and myself went up to the hotel restaurant to a beautiful private dining room to meet Rumiko Aoyama and Mrs. Adachi. These are CF mothers, Our meeting was warm and tearful. Here were my sisters who understood this disease and how it affects a child and family. To all my CF community mom friends, I brought you with me, we cried and bonded together.
Lunch was a wonderful and exquisitely presented Chinese meal with many individual portions offered at our place in fine white bowls of various sizes. The room was very beautiful with interesting understated flower arrangements on the table and on the far wall a collection of small teapots. We were having a “mothers day tea” for all of you who know that this is CFRI’s most successful fundraiser. And the conversation with us all was just like you would expect it to be. It was the same as when we all in the CF community get together, we compare notes, share how our children are doing, describe treatments and discuss new things we have learned. Mrs. Adachi and I reached across the table and held hands tightly expressing the deep meaning to be connected in this community and how important it is to have CF family friends. It comforts like no other salve.
Rumiko lost her teenage daughter to CF in 2004. A photo of her daughter, Yoko is in the memorial slide show shown at the CFRI conference. She courageously is still very active in trying to help bring attention and proper care to the disease. There are only 37 patients diagnosed with CF in Japan. There are only 6 families actively involved but who live distances from each other. It was Mr. Adachi, a local university professor with the help of Rumiko that founded The Committee To Enable CF Treatment in Japan. This is an awareness and lobbying group that was enacted in June this year. The CF concert we came to see and for Ana and Isa to participate in will benefit their endeavors.
Early afternoon we went to the University where the concert was to take place. Meanwhile we heard that the typhoon was expected to arrive in full force for this area at 6PM, the time the doors were to open for the show. The weather was raining but there was no wind. Time would tell how this would impact attendance. Arriving at the auditorium perfect organization and professionalism was immediately obvious. A rehearsal revealed that we were in for a treat that evening. We were also invited to be interviewed by the local Sendai TV station. We were asked to answer in 30 seconds, “what would you tell about this disease to someone who does not know about CF?” a nd “what do you want to say to the CF families in Japan?” It was very special for me to be included in this interview.
There were a number of hours before the concert started so we were treated to cold refreshments, hot tea, bowls of small individually wrapped Japanese crackers, cookies and candy, bananas, and small sandwiches of egg salad and ham. We had to take our shoes off before entering the area of the “Green Room” where we could be in a tatami room that was used to teach tea ceremony, lovely. I strung and arranged the Healing Flags decorated by CF families in our area for my onstage presentation of “our bond across the ocean” to Mr. Adachi and Mrs. Aoyama.
The concert began with the main performer, Ambe Mitsutohi playing guitar and singing. He was so good. Next, Mr. Adachi was invited to the stage to be asked a series of questions about CF and his son, Akihiro. His answers were highlighted with small video clips of his son as he grew to be 20 years old. It was moving and touching and disturbing as Ana pointed out, the images and the treatment and care was a reminder of what CF was like 30 years ago. His son was very sickly his whole life without the proper nutritional support of adequate enzymes and pulmonary medications. The Adachi’s traveled to Los Angeles when Akihiro was 5 years old and there lear ned how to give percussion treatment. We were struck with how fortunate we have been to have our community and good, advancing medical care. This young man and Rumiko’s daughter did not attend school after elementary grades because they were so ill. The Adachi’s have listed their son for a lung transplant in Japan. There were told it will take about 3 years if donor lungs could possibly be available, with only five brain dead donors this year this may be too, too optimistic. We all must send love and positive thoughts to this family.
The concert continued with more music, Ana and Isa’s speech about CF and their miraculous lives. They invited me onto the stage to offer our gift from the CF community in America. After a tentative Konbanwa (good evening) I offered the Healing Flags to Mr. Adachi and Mrs. Aoyama. They in turn offered gifts to us. The flags were unfurled on the stage with us all holding them up, green, pink, yellow, blue. Andrew entered the stage to bring Isa her bagpipes to be played as an incredible example of the amazing miracle of lung transplant that has turned sick Ana and Isa into women who can be active, athletic, healthy and even play the difficult instrument of bagpipes. It was quite a moment. We were all overwhelmed.
Obviously, the typhoon did not interfere with the concert. It petered20out from a typhoon to a tropical storm to one with only rain and an autumn cool in the air. We were very fortunate. It may have prevented some from attending but under the circumstances with such a threatening storm the concert was very well attended with people of all ages including school children dressed in their matching uniforms The concert continued with Ambe singing. After a 15 minute intermission the auditorium filled again and we were able to sit in the audience to enjoy the remainder of the show. Rumiko and I sat next to each other with Ana sitting nest to me on the other side.
Again, I do not speak Japanese so I can feel and see but I do miss a lot in words. Ana was able to interpret some of the songs and commentary for me as we sat and enjoyed. There was a young woman’s chorus from the women’s university in whose auditorium this concert was staged. They were marvelous, and there was a reading from a children’s book by a pediatrician who was in the audience. The story was told that an 8 year old child of an unnamed illness asked his doctor if he would ever be cured. The doctor answered saying we do not know these things in life. If life had a straight road we would never know when to turn. Life is a curvy road where you can not see around the next bend. He did not know if this child would ever be cured but he would walk together with him. It was so very touching a nd read with such heart. There was more music, singing and then a wild percussion band with a large drum with a bright pink strip around its middle, small tambourine like hand drums and energetic drummers. It was fun, loud and energetic. This amazing concert came to a close with Isa playing Amazing Grace on the bagpipes and Ambe singing a song that he wrote about the bond of twins and the bond of community. The entertainment was so high quality, so enjoyable, so educational, so touching and all for CF! Here in Japan! Carol Jenkins, and all of you at CFRI, you would have been so moved to tears as we were. Incredible!!!!! We loved every minute of it. You will see it on You Tube soon.
When we left the concert for the evening there were long and heartfelt good byes. We wished Mr. Adachi well and to have good fortune for his son. After Rumiko was already in the cab she decided to get out and ran over to me to hug me for a last time. We stood on the street edge holding each other and telling each other we are friends forever. To think she was alone when her Yoko died with no other CF community to understand and support her, it breaks my heart. She is a warm and dedicated woman who is breaking through the reserve of Japanese culture to reach out and express her emotion. What a meeting we had.
We did not check into our hotel until 11PM and w ent to our rooms agreeing to meet at 7:30AM for a traditional Japanese breakfast. This will be the end of my trip with Ana, Isa, Andrew and the crew. My next adventure will be to find my way back to Narita Airport in Tokyo without my Japanese speaking guides. Wish me luck. Sayonara.
Robin
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