Miracle On Order.......Miracle Received

What More Can I Say?

2011-03-11T15:54:00.000-08:00

Ahhhhhhhhhhhhhhhhh!
Thank you for the Miracle!

Nine months gestation.................

Today is the day! I am moving out. Sitting here now in the wheelchair (only chair left in the apartment) waiting for Cort furniture rentals to come and take the rest away. This is the day I mark Mission Accomplished. I am moving home to Livermore full time now. And it has been exactly nine months in this apartment. A perfect amount of time to gestate and release a daughter into her second life. The time here covered the period during transplant evaluation, transplant listing, transplant waiting, transplant and transplant recovery. I have been here for three seasons Summer, Fall and Winter. We had Christmas here huddled together in the front room with Anna's recovery bed next to our tiny Target tinsel tree. Sara says it was the best Christmas she ever had. This place held me in my tiredness, in my sorrow, in my anxiety, in my hopefulness, and in my final immense gratitude. It is done.

I am so glad that I am not getting on a plane to some far off city but only driving 1 hour from here. We will find a new normal and ways to be together in good health and for fun. I am so happy to return home. Before I do I am writing my last blog entry for this chapter in my life. I am serious this is it. This blog was to be about my experience being a mother of a 29 year old with cystic fibrosis who needed a transplant. That is not what I want to write about any more. I want to claim other parts of my life. I want to focus on other aspects of who I am. I want to dive into my third chapter of life feeling fulfilled and ready to explore other ways to be. I am considering whether to start another blog so I have set one up in case I can not get the writing bug out of me. I will call it Chapter Three (click on the title to get there). If you are interested you can check in. I give no guarantees how much I will write or even if I will but I thought I should set it up to give me an option.

Before I sign off I want to mention the serious and the silly. The serious is the earthquake and tsunami that hit Japan today. The morning was spent with the TV on. I send love and prayers of protection to my friends in Japan. I am especially concerned about the Adachi's and hope that Akihiro who received his lung transplant in December is doing OK. They live in Sendai which was devastated with the rising water. Part of my journey to Anna's transplant was via Japan where I prayed in their temple. Japan is a very special place and my heart goes out to everyone there.

May Blessings Rain Upon Japan

And here is also the silly. When I moved here I posed the question...... how much yogurt would be eaten in the time I lived here? I reported from time to time on my goat yogurt consumption. I saved every container for this very moment. The answer, 39 containers of goat yogurt, plain and vanilla. Think what you may about this food of choice for breakfast.

So, here it is, my ending to the story. I received hope in Japan that a Miracle would come for my daughter dieing of cystic fibrosis. Many serendipitous things happened along the way. We even met and received blessings from the Dalai Lama. The Miracle arrived. It was tough and grueling for a good part of this journey. Many tears were wept and many wonderful loving and fun times were had too.

We must also always remember that someone we do not know lost their life in order for Anna to receive a new life. We are so grateful. And now, because of this kindness and generosity from another's grief we are beginning new lives, all of us, Anna, Casey, Sara, Lou, Doug and Me. It has been an amazing journey for sure..................

Our Last Supper (Lunch)

Want to continue to follow Anna? Go to Anna's blog.

Visited With Grammy

2011-03-09T18:27:00.000-08:00

Today we redeemed a gift to have a pedicure........... fun and relaxing. Thank you Linda, it was great. After our feet were pampered, cleaned and beautified we went out for lunch. Food again, my increasing waistline is glad all of this fun is soon coming to an end. Our restaurant search lead us to Redwood City and a funky little restaurant that in her last years was a favorite of my mother's. As we walked into this late 50's era place we immediately felt Grammy. Mom was here. I took her here to lunch a few times. The lunch was good, not fabulous, but it felt that we were with Grammy. This was a surprise for me. I did not realize that today was a day to include Mom in our day. It was perfect though.

After lunch we decided that Mom would have wanted us to have desert so we traveled up the hill to the Woodside Bakery. Mom and Dad lived in Woodside for 30 years. It feels like their home still. They loved the bakery. We bought a small box of cookies "on Grammy" and coffees. She would have been so happy that we had these cookies. To spend a little more time with Mom, we went to the Woodside Library where a bench was placed by our family in her honor in the beautiful native plant garden. It was indeed time to talk with Mom. It was time to say, "Mom, look at Anna. Can you believe it? She has new lungs!" Mom would have been so thrilled. As Anna said, she would not have done well during the intensity of the hospital recovery and all but only if she could see her now!

We sat on Mom's bench eating cookies and sipping our coffee. We felt her and Dad all around us. They were wonderful people who loved gardens, nature and Woodside. Again, it was a full circle moment of completion. Where I had sat on that bench my self since transplant, Anna had not. It made us both feel good to show Grammy the results of the past difficult year. When we sat there Anna said, "I have a feeling I am going to have these lungs for a very long time. They feel like they are at home inside me. They are happy here." Love that thought!

Let The Show Begin!

2011-03-09T06:50:00.000-08:00

Anna with Marc Smolowitz

Finishing up post transplant........

Sunday we all met in San Francisco for the showing of the movie, The Power of Two for the cast and the crew. It was again at the Viz theater in Japantown on Geary. The film is finished and tells the story of twins with CF who meet the challenge with courage and creativity breaking through boundaries, living beyond expectations, and becoming international advocates for organ donation and transplant. Their struggles are told honestly and their triumphs are an inspiration. Interwoven in the story is Anna, their friend for 20 years. While their story is being told, this person who was a child when they first met her has also grown into an articulate woman fighting the same foe. Anna bravely shows her end stage CF and talks about what it is like to be on the transplant list. I am the tearful mother by her side.

It is a movie and a portrayal of our family within it that we can all be proud of. I hope that the film offers all of us an opportunity to be vocal advocates for organ donation. We know that everyone wants to see it but there is an official process that must happen first. How to market the movie is first on the agenda. We were promised that this year there will be a gala event in the bay area for family and friends and all interested to come and see the film. That will be very exciting. If you are interested you can stay in touch through Anna's blog, facebook, the Power of Two web site or (not really announced yet) my new blog. When there is a local date for it to be shown we will let you know.

Notice, Casey, Doug and I (behind the camera) were wearing masks. Anna shared her little stuffy nose with us so we were very careful at the movie. It was eye opening to have to wear a mask like she does. It is warm with your hot breath filling it but it is also a feeling of safety. We were not sick but we wanted to be very careful to not share any germs. There were a number of transplant patients at the showing.

One more comment about the film. It was striking to see Anna pre-transplant. In the film we revisited the sounds of coughing and the tightening of the stomach as you watched her fight for clearance. CF is such a hard, hard disease. Those that have it and fight it are remarkable.

Among our other CF friends out there are Steve and Akihiro who both also received lungs recently. We understand that Akihiro is doing well in Japan. We are so pleased. His father is portrayed in the film with photos and childhood video of Akihiro stressing the differences in CF care in the US and in Japan. He is the first CF double lung transplant recipient ever in Japan.

Steve is still on some IVs and working with his meds. He has had a rough time in his recovery since rehab and we think of him all of the time. We look forward when he gets better and this summer he and Anna can meet in the pool for a swimming fiend duel.

And, there is another friend of Anna's from CF Camp and Retreat, Katrina. She is in San Diego and has been on the list for over a year. Katrina is severely ill at this time. There is a call out for a living lobe donor for her because she can not wait any longer. It is a small number of lung transplants that come from a living donor but it does happen. Those that are a match can offer a lobe of a lung to someone on the list. In this case you usually need two living donors so that both lungs can be replaced with lobes. For Katrina, they see this as a last chance for her.

I know that Anna is struggling with how unfair this seems for Katrina. She has been watching her since she was listed long before Anna was. Patients wait much longer for lungs in other parts of the country and even in this state. Northern California has a very good record for organ donation. There are patients on the Stanford list who have been there over a year and are still waiting but the statistics are so hopeful in this area for them to finally receive their lungs. This just underscores the great good fortune for Anna that she was able to receive her gift after little over 3 months. We are so grateful.

And again, it was poetic justice that as we are wrapping up this phase of the transplant experience we got to see the final film. The sense of full circle is real. We are moving on.

Refinishing, A Very Good Project

2011-03-08T04:39:00.000-08:00

Week 15 post Anna's double lung transplant......

How to begin to write this week? I will write daily until I give up the keys to 1513. This is the last week of blogging about a Miracle On Order and being "the mother of a 29 year old daughter with cystic fibrosis" edited to: "the mother of a 29 year old daughter who received a double lung transplant". I took up this project to blog about this experience because, 1. I needed a creative project for me to do while I worked to support Anna; 2. I wanted to share about this miraculous and exceptional experience of resurrection and medical technology because it was so extraordinary; and 3. It was simply therapeutic for me to write it down especially knowing I had an audience that included my family, close friends and new friends who could witness this life event with me. So, to end this blog I will write as I began it, just telling the story.

Last week Anna and I went to lunch and chose PF Changs. After we sat in our seats Anna's eyes lit up and she reflected, "Mom, we have come full circle. This journey started here. Remember it was during my transplant evaluation that we went out to lunch at PF Changs and you got that fortune?" I remembered, "Wow, you are right, Anna. We then swore that we would not have another fortune cookie after that, but today we should."

That fortune in early July said, "You will soon witness a miracle." It was stunning. Finding a miracle was exactly what we were looking for. Anna was at the end of her life with CF lungs and the only miracle to save her was new lungs. We mused on what "soon" meant, such a relative term. Now we know, soon meant 119 days on the transplant list. We could not know this until the time had passed. All that we could do was to trust and have faith that our miracle would arrive "soon".

After we enjoyed a lunch of lettuce wraps, hot and sour soup and pot stickers the check arrived on the ceremonial little black tray with two cellophane wrapped fortune cookies for us. Anna chose hers and I opened the other first. My regret is that I did not photograph it right away. I slipped it into my wallet, it is not there now, but it did say, "Good things come to those that wait." Perfect. Yes, when you are patient and you wait for "soon" to arrive, good things indeed do come. Anna's said something about the exotic and traveling to the tropics. That was really perfect for her too. From crippling pulmonary disability to being able to realistically dream of a tropical vacation is where she is today. So, we came full circle, miracle received.

After that lunch I returned home to Livermore for the weekend. It still feels novel for me to be home. It has been suggested that Doug and I need to go away, that we need a vacation. It is just that I have not been "home" hardly at all in the last year and that going on vacation is what it feels like when I go home. I just want to be home for more than a weekend now. I want to get up in the morning from my tempurpedic mattress (ahhhh) with a greeting from my sweet Roxy dog. I want to go into my kitchen and make my coffee there not here in this Sunnyvale apartment. I want to do this day after day after day after day. Then I might think about a vacation to some far off land.

I have thought often about something that I say, "I can not wait until I can have my life back or start my life again." When I say this it makes me stop and reflect, "if this has not been my life, then what...... is". This constant statement goes back to one of my first blog posts on June 17, 2010 when I wrote, "I do not want to do this. There is something inside of me that rebels." I would never choose to have to fight against the most formidable foe of end stage cystic fibrosis. No one wakes up one morning and says, "oh, today, let's see, ah yes, I want to spend my time fighting for my daughter's life and wait for a lung transplant while I watch her suffer and nearly suffocate from thick crap in her lungs." I had to do what I had to do. It is now done. Now, I want to wake up from more creative dreams. Enough of this type of struggle.

So this weekend I started a project, refinishing some chairs. I found them on craigslist for $12. I think they are kind of cool. So, symbolically it is really therapeutic. I spent hours taking off the finish. I worked with steel wool rubbing off the old worn and ugly to reveal the beauty of the wood underneath. I am not sure if in the end I will want these chairs for my new, old round kitchen table. I am not sure how they will end up. But, there are possibilities that they will be great. It is fun to have this project to get me started again. It is just what I needed to begin to say, I have my life back. I am getting up each morning to do what I want to do. And my dear Anna, she has been "refinished". Her old veneer has been taken off and the beauty of the new is glowing.

At clinic yesterday Anna's PFT was 78%. It is continuing to climb. She is watching herself get better and better and better. All is good with just a few med adjustments. She graduated to going to clinic monthly now. Amazing. She is very, very happy and there is so much time in her life now, she does not know what to do with it all. Projects. Yes, she needs projects too..........

Tendrils

2011-03-03T06:01:00.001-08:00

It happened yesterday. We were clear. The time has come. We are done with this phase. Sitting together with "nothing to do" Anna and I recognized the signs we were looking for. I wanted there to be enough cushion of time to find them. I wanted us to find them together so that it was mutual.

Anna currently has a small cold in her nose but she is handling it. She immediately had a swab to check for any bad viruses. There are none. This is just a little cold in her nose. I must note this is a very unusual event for her. No cold that I have ever remembered was "little". All colds went directly to her lungs for a protracted CF event. And, I mean all, since the beginning of time. Without CF lungs being vulnerable to the whims of viruses she is handling this one like a normie. It is a sign, a sign that this is working.

Other signs are the obvious such as, she is driving, she is cooking, she is getting on with it. What is left are the tendrils of holding on to each other. This is why we needed this cushion. We have held on to each other so tightly so lovingly, with such respect and care through this year that finding those tenacious binds and releasing them is difficult. Our desire for our own lives and discovering who we are now is our push. Excitement about how to live a "normal" life (albeit as a transplant patient now) is an inspiration. But, the love, the friendship, the companionship we have had with each other to have made it this far through so much pain, fear and just plain "Hell" is so sweet and sticky like glue. Time has come to dilute the glue and separate into our lives. We will find a new normal for our visits and time together as mother and daughter and as a family.

Many people have commented to me that they have enjoyed reading the story that I have told in this blog. I am so grateful for all of the positive comments and compliments to me. I am so grateful to have been able to write about this extraordinary experience and to have a way to so freely share it with others. Modern day technology is quite astounding. The phenomenon of blogging about ones life and sharing with others is an amazing opportunity. I believe that it must be most valuable to the people out there who are suffering from some difficult fate and need community and information. It is very lonely to live with life threatening diseases and situations without knowledge and community. It is an incredible world that is so open today.

I will complete this blog next week. I hope to gather my thoughts and reflections as I finish emptying the apartment and handing in the keys. That will be a monumental day of liberation for all of us. May our dear Anna be blessed with good luck in this journey. May she be blessed with good health, good medical care and opportunities to fulfill her life's dreams. May all who have been there with us also be blessed with goodness.........

Blowing In the Wind

2011-02-28T08:33:00.000-08:00

Week 14 post double lung transplant......

Well, this past week we went with the direction of the wind, so to speak. From art to science, and with country friends visiting and luncheoning in the city, we did many different things. The week ended with Anna passing another milestone of independence and good health. Anna had a dinner party for friends! A simple thing to do but for her it was a very difficult task in the past. Her energy level, time constraints with busyness due to treatments and regimens and cross infections concerns made it so difficult to simply have friends over for dinner. Saturday she had 4 women, all great supporters of her and connected to her CF life for a birthday celebration for dear Linda. Wonderful, life is getting even more normal.

Thanks to Sue and Peggy for visiting. Here is Peggy's coffee reflecting an image of the sweet hearts of these two special friends...........

After visiting the art museum with Peggy and Sue we met Sara at the CF Lab for more research of Anna's CF sweat.

And thank you to Dr. Wine, a long time friend of ours on this CF path. We started this journey together when our babies (only days a part in age) were diagnosed. It has been such a life time of experiences, changes, trials and miracles.

Only two more weeks with the apartment............ and I think this goes for the blog as well......
I will say more soon.

Celebrating, Do You Know Happy?

2011-02-23T06:57:00.000-08:00

Celebrating February 22 2011, three months post transplant, November 22, 2010

We had heard the magic of three months. Well, we also know that this magic is not for everyone. There are others who are continuing the struggle after three months to get their feet under them. Our friend, Steve landed back in the ICU about two weeks ago with a terrible infection and is home now on continuous meds. He is four months post. We think of him every day and send good vibes. Anna constantly reassures me, "Steve will get better, it will happen. He has to and when he does he will forget about these hard times." Steve we can not wait to see when your magic timing of turn around will be.

But, for Anna, the magic of three months is true. This week seems even more different. She is more in touch with getting on with it. The beginning of driving, spending some time alone, building confidence is strengthening her. This week I will only spend three nights in the apartment. We are weaning. It is hard as we are such fast friends enjoying time together, lunching, shopping, Oprahing, healing. But, we need our independent lives and new directions.

We had to celebrate this date so of course Anna chose lunch at Yakko's, our celebration restaurant this year. Temptation roll, a bento box, and a big smile for Anna. We then drove to pulmonary rehab at Sequoia Hospital. Anna's getting so strong. Steve is not there any more as he is home healing but today a new rehab buddy appeared. He is three weeks post transplant after his second double lung thransplant. He rejected his lungs that he received 5 years ago. Amazing to see how incredibly well he is doing. He is a CFer too. So now as I slip away even more, Anna has this new buddy to keep her entertained.

Update on my "other knee". Remember the HELP button in the elevator at the orthopedic surgeons office? It was still there staring at me. I did not have to push it this time as he declared, no surgery at this time! His conclusion, there are tears and degradation with arthritis as the main culprit for my knee swelling now. He told me to lie down while he drew his syringe of orange stained fluid from my sweet knee and shot in some cortisone. "Rest the knee for ten days, use ice and then get back into exercise slowly." OK, will do. A much better outcome than last August.

It Is Done............

2011-02-22T06:56:00.000-08:00

THREE MONTHS POST TRANSPLANT.......

Anna says it all! Please click here to read her own words......

Anna at Three Months...

Changes, Moments

2011-02-20T06:59:00.000-08:00

Changes, changes
Last weeks 70's has shifted to cold and snow....

Sunday, tomorrow marks 13 weeks post transplant........

The gift and curse of time. Time heals and passes during those times you say to your self, "this too will pass." That is sure, that is something we can count on. But as time passes what is, is no more. There are constant new moments. The moments of promise you have already touched have slipped by. They will not return. So now as this is a moment I do not wish to let just slip by, I notice. I notice the waining moon that lit up the morning sky as I woke up. I notice the snow melting on the deck outside the window. I notice that now I am in a "better" place. I cherish this moment and this noticing.

I think this is why we love the country. It slows us down. It makes us notice. Less zooming cars, less slow cars backed up at each stop light waiting for the train, less concrete covering the soil that accepts the fall leaves, the winter snow, the spring shoots and the summer dry grass. Back to Murphys again to ponder on our new possibilities. Nothing needs to be cast in stone. No decision has to be made that can not be changed but when you are at our age,we seem to weigh things far more carefully. But at this age there is also an advantage of that time that has passed. As it has passed, our experiences have gathered. We can draw on what we have felt, seen, been through and dreamt to find a direction of sorts. Where has our hearts led us? Where do we resonate? What is most important now? How do we create our lives? What flavor is most delicious?

Coming out of the intensity of the last year can be greeted as a rebirth of sorts. I think this can apply to many such experiences of intense human living. Whether it is a death of a loved one, a divorce, a transplant and saving a daughter's life, an accident, a job loss or other extraordinary times, one can feel the pain, the transition, and open to new possibilities. They are always there. They exist in those moments that you begin to notice. I know that Anna is also listening, noticing, realizing that this is an opportunity, a new turn in her life. She must also draw on her past, what she knows and now what other things she wishes to learn about. The world is open. Where does she resonate? What nurtures her? What nurtures anyone of us in our lives? Are we living the life that we want? Can we make even small changes that can lead us to our preferred life direction? Is there something now that speaks to what you want? Can you notice it? Can you acknowledge it?

We passed a milestone last week. Anna drove with me in the passenger seat. Things are getting better. Each week there is a level of strength that is growing. Independence is not far away. She continues to do well. I feel more "normal" too. I am less tired. As Vincent, the acupuncturist told me, "as you rest more and more, you will feel better." Rest helps us to restore. I am restoring. This is all good and my mind is on the positive today but Tuesday I go back to the orthopedic surgeon. An MRI on Wed showed a significant meniscus tear in my "other" knee. The right knee has the tell tale signs of intense swelling, stiffness and the general inability to get me around properly. Oh boy. Well, what a way to end this journey, the way I started it, but this time Anna has agreed to be my caregiver as I recover from the next knee surgery. I guess it will be poetic justice and a karmic payback. My turn again to be vulnerable and now I will let my newly made daughter with gorgeous lungs shop for me and bring me tea. May this time pass too but not without noticing as many moments as I can.

Updates and Dreams

2011-02-15T06:51:00.000-08:00

Ahhhh, healthy lungs, suflowers and the country life....

12 weeks post transplant.............

I have been bogging down on the blogging. The energy seems to be waining as we relax more. Time is proving to be the healer as Anna gets stronger and "weller". She still is some moon faced due to the prednesone, a true tell tale sign of a transplant recipient and there is a sense of the delicate. It is like if you see the strong limb of a tree you may reach out to grab it and hold on like its the arm of an athlete but if you see the pink plumb blossoms opening on its stock your inclination is to approach it gently. Anna is a plumb blossom aspiring to be the strong limb and athlete one day.

At clinic yesterday Anna's PFT (pulmonary function test) proved to continue to go up to an FEV1 of 71% and the marker for her small airways at 133% of what would be expected of a healthy person. Wow, to see growth in the PFT instead of decline is a real gift and an oddity still. All is doing well, still some adjustments in meds but all signs are of recovery. Anna was given the go ahead to drive and her sternal precautions were lifted. She was also given the go to be able to travel a bit and go to Murphys! Things are starting to get normal. So I need to back off a bit and start handing over the reins to my plumb blossom.

I have misplaced my camera. I think that word is kind of like "misspoke". Did I misplace it or did I loose it? I can not find it so perhaps the truthful thing to say is that I lost it. I have thought of one more place to look but I can not get to it. I have missed having my camera. I have enjoyed taking photos through this experience and sharing images with the words. Hope I find it soon or I must buy another camera.

I wanted to share photos of yesterday when we went to Jeff Wine's Cystic Fibrosis Research Lab at Stanford where Sara is the research assistant. Anna volunteered her CF sweat for an experiment. It was great to see Sara in action. They are studying various ways to collect data about the sweat response in CF. The sweat test was the original test for CF. Now with genetic testing one can have their blood tested for the gene. I believe any positive sweat test is also followed by genetic testing as well. Because my camera is "misplaced" I used Anna's but it quickly left my hands to meet the floor with a crash. I broke it. I may be having to buy two cameras now. Oh hum.

There will continue to be more updates on Anna as there are still more procedures and tests for her in the next month but I am finding my mind wandering to other things like, do I want to be a farmer? Or more accurately, do I and Doug want to finally end up in a few years "retiring" from Livermore to live full time in more of the country (expanding Murphys) with some acreage, a barn and a few animals, a pond, a country garden, a few grapes and the sounds of the creek and frogs? Is this Livermore home an interim to be followed by a more rural life? On this we are pondering. Could it truly be that what was chronic illness as the center of our decisions is now gone and we can think about ourselves as the center of our own universe now? It is very hard to make this shift. Our minds are so ready for illness and care giving. Can our minds now accept Anna's improving health and growing independence? We do need to make some attitude adjustments so that we can expand our horizons.

........The thought of a cute red barn with a split rail fence holding a miniature horse or two, designing a new home that compliments the surroundings and opens to the western sunset, walking into the country garden to harvest the sunflowers and fresh English peas, sweet and crisp, is very appealing. Just dreaming......... It is a very different place (mental space) than where I have been. I think my mind just needs a vacation........... Could I really do this as I enter this older stage of my life? I must think, why not? All dreams are possible, don't you think?

Happy Valentines Day

2011-02-13T21:30:00.000-08:00

My Valentine!

12 weeks post transplant.....

I am home or am I? Today I was in Murphys, Livermore and Sunnyvale. I have a bed for my head in all three places. Which is home? I crawled in this Sunnyvale bed tonight with my partners here, my MacBook and my IPad. They sleep next to me after I enjoy a little program presented by one of them with my head propped upon my cushy pillow. They are my companions while living a solitary life in the apartment. But, wait, I did give notice! March 12 is not far away so long as Anna's body cooperates and she continues to do well. Then it will be Livermore and Murphys. Hooray! And then my partner will be Doug, my valentine! That will be great, indeed.

Tommorrow morning is clinic, bright and early, got to get some shut eye and hopefully Anna continues to pass with flying colors............ An update will be coming soon........... Happy Valentines Day.

An Update........

2011-02-07T21:49:00.000-08:00

11 weeks post transplant.........

Monday morning I wrote a blog post that some how was erased. So annoying. I did not have time to redo so now, I am. I can not remember what I wrote, if it was clever or whatever. It is funny how things change all of the time. What you feel like writing about one minute will change after a period of minutes, hours or days. When you sit to compose it depends on what is on your mind at the time your fingers hit the key board. The words I wrote on Monday are now long gone but because of the photos left in this space I know I did talk a bit about nests.

Last Friday my brother, Greg, my niece Erin and her handsome Ben came to visit us for lunch. Following lunch we went to see the new sculpture at the Palo Alto Art Center created by Patrick Dougherty. Patrick is actually a cousin of ours. His father and our father grew up together on farms in the Hinton area of Oklahoma during the "dust bowl". They were part of a large Irish family with many close cousins. I never met Dr. Ray Dougherty, Patrick's father but when we learned that Patrick was creating these wonderful sculptures in the bay area a few years ago we introduced ourselves to him. Patrick has become quite well known for these marvelous "nests". He uses sticks, twigs and tree cuttings to build fantastic whimsical structures. We are so lucky to have one near by. It is at the corner of Newell and Embarcadero for anyone to visit and walk into. It would be an absolute dream for a child to have one of these in their backyard to play in.

Today we are doing something completely different. Anna and I are spending the day at Stanford hospital waiting for hours while Anna is having a gastric emptying study. They are looking at how long it takes for food to leave her stomach. Slow emptying is a common side effect of this type of surgery as so many of the nerves necessary for normal function are cut and it takes a while for them to repair. Sitting in the second floor B and C waiting area has been the perfect place to see "the team". This is the passage way for the lung transplant doctors, nurses, and others. You do not have to make a clinic appointment. Just sitting where we are you can visit with your health care providers as they make way down the hall......

All is continuing to go well. Anna is improving everyday.......... Life is so good. She wrote such a sweet blog entry about how it feels like the greatest Christmas gift, Click Here.

Visit Patrick Dougherty's web site to see more of his incredible work by clicking here: Stickwork

A Poem and More Reflections

2011-02-04T06:41:00.000-08:00

ten weeks + post transplant.....

It is amazing
How it all changes
Each moment
Aware of the textures
Aware of the tastes
Arising
Falling
Opening
Closing
Here I am

I am feeling better now. Working through with my emotions. It has been a week of easy tears. That tends to be more unusual for me but when I have those times it is a relief. Letting some of it out helps so much. It makes me feel more vulnerable with very tender spots that I want to care for. Since I can be a tough one on the exterior most of the time I kind of covet these times of vulnerability. It is nice to feel a bit softer.

But, as I said, I am feeling better now. A letter of notice has been sitting on my table for a day or two waiting for me to act. I think today I feel ready to hand in the notice to vacate this apartment on March 12. That gives a bit of a window past our three month mark of February 22. That gives a little wiggle room for our transition to launch. I have the willies about this because when you go through this intense of an experience you can not believe it is truly lifting. I wonder if there will be another crisis just around the corner hiding from us. Could be, but I am going to vote for this is a go and Anna is just going to continue to improve. No more obstacles, just healing and restoring for us into a new Spring.

More Reflections and A Poem

2011-02-01T02:38:00.000-08:00

Ten weeks post transplant......

If I am being redundant then I apologize. Anna continues to get better. There are still a few issues like regulating her blood pressure to a lower, more consistent level; getting her blood sugars in better control; the very slow healing at the top of her incision; continued sternal precautions; a resolving blood clot and the need for coumadin but, she breathes. The lungs are perfect. Time will give her what she needs to open and expand her new lungs but they work well and she loves them. Because she is doing so well, at the next clinic visit in two weeks we will talk about her being able to start driving. She is on track to the magic three months when she will not need the constant companion. I am deciding on a move out date from this "crash pad". We are talking about that a lot.

I think the recognition that she is truly a survivor is allowing the past year to come into clearer focus for me. You know how when you are so engrossed in a task you can only see what needs to be done and not the bigger context? Once again, to risk being redundant and boring you, I am recognizing the obvious, we escaped the bullet. Anna survived. Anna is surviving. Anna is beginning to thrive. I gave it my all. I have written about my weariness, my tiredness, my loneliness for home, my husband, and my creative life. Each day I am feeling this. I see this as healthy. This is the way it should be. Heaven forbid if I wanted to just continue this path as the ever involved doting mother. How gross, really. It is much better that I feel I want this to be done so that we can both have our separate lives and our own adult paths.

But last night the grief bubbled up. The pool of grief now is barely under the surface. The new healthy ground is allowing me the luxury of realizing what really did happen this past year. We fought to save her life. It was a pointed determination and conviction that knew not what was to come but was willing to overturn all obstacles including the haunting notion that she was dieing. To fight this fight it was better to set our sites on the outcome we wanted, new lungs, a successful transplant and a new life. What was happening in our midst and under our pounding hands was, Anna was dieing. That's the grief, that is the recognition that is finally here in a deep way. I was a mother in battle. We were a family in the most profound challenge of our lives. Last night's cries and sobs began an emptying of that grief and a deeper recognition of my own personal story. Each of us has one. That is what we are creating and writing as we move one step at a time.

One At A Time

Oh the sands of an hour glass
we watch them falling
one at a time but in a stream
marking time

The gravity of life forces the falling
One pile of passing opportunity with each grain
One pile of mounting experience with each touch down

There it is, the before and after
in front of you
Yet, never the same even in each second
of the passing,
tumbling,
falling sands

Turn it over
don't let it end
the new knowing will usher more grains
building another pile.

May All Continue To Go Well

2011-01-30T17:56:00.000-08:00

The cold weather has returned. So glad we went to the beach when we did. Week 10 is about to begin. The tiredness is not as intense. I started some acupuncture a week ago and have now had 4 treatments. There is something about this Chinese medicine. I know that there are studies that show it not effective but there are others that show it to help with pain. I guess I am going for the pain. It is the pain of tiredness, soreness in the legs, and general pain of life. Wanting to get through this final period with a sense of rejuvenation, ready for an energetic Spring and year to come. I have sought out acupuncture at certain periods of my life for about 30 years now. It seems to work for me. What I do know is that that hour on the table with needles inserted, a room darkened, gentle music playing and a kind soul caring for me does the trick. I always leave with a sense of deep, deep rest. Just what I need.

This week will include a clinic visit, rehab and the continued process just begun of cleaning out Anna's cupboards. She is starting to reclaim her home and its contents. Even after going for "an hour" walk she can recover and keep at it. The young woman is starting to act like a "normie" like you and me. We take our ability to have our day and all the things that we do definitely for granted. To someone with serious chronic illness the normal things can not get done like they do for us. But now, Anna is starting to getting them done. Wonderful.

At clinic we will talk about our transition to normal. I will have to give 30 days notice to leave my apartment and I am hoping that I can give notice this week! That means that hopefully in this month Anna will begin to drive again after a year of not being able to while taking over or rather, taking back her life with me shrinking back into the shadows. I will always be there when needed of course, of course but it is time for new life and more time with our honeys. Less time as a tied at the hip mother daughter team. It is time. It is time. I am only thinking positive for Anna's continued healing and recovery to move forward. May all continue to go well..............

A Day At The Beach

2011-01-27T20:20:00.000-08:00

January at the Beach, Ahhhhh......

The weather in California is unseasonably warm. Yesterday we went to the beach. Sorry to those who live in other parts of the country but it was gorgeous in the 70's here. Another outing that is reminding us of healing and why it is so good to be alive and to breathe.

Every where you look there are treasures to be found.

9 Weeks Post

2011-01-25T07:02:00.000-08:00

Mother Sculpture

On Saturday it was 2 months and today it is 9 weeks post transplant.....

The days are passing with out crisis, with continued healing and more and more indications of "normalcy". Yesterday Anna said, "Remember when Breath'n Steven wrote that it is amazing to breathe every day with his new lungs? He is right. It is hard to believe this. Every breath is amazing."

We are at the 9 week mark now. 12 weeks has been the magic number to us and so we are getting closer. It is at 12 weeks that most transplantees can begin to drive again and are not in so much need of help and constant care giving. Soon we are going to have to think about our transition so that it is not too abrupt in my absence. I imagine we will go a little at a time. Anna talked about her needing help her entire life and how strange it will be to not need help if that will really be so. It is true that we made choices with Anna that centered around her need of support for her entire life. I am sure she will still need some but the thought of a healthy, independent Anna who can finally strike out of the binds is quite wonderful.

As we are getting closer to this time of transition it seems it is harder and harder for me to continue doing this. It must be because we are coming to an end to this part of the journey I am unraveling the tight holding on. The call to be "at home" with Doug is so strong. I miss my life of tootling around the house, coming and going on my own schedule and long periods of aloneness where I can concentrate on my creations. This morning I thought that instead of resisting these feelings or feeling bad about them I should dive into the "I have had enough of this program". I should not ruminate on it but feel it. What does it feel like to want this chapter to be over and to get on with my life?

Perhaps it is that there is something bubbling inside that wants to burst forth. The bubbling is lapping at the walls of my restricted life. It is reminding me that there are other things to do. This makes me anxious in some ways as I am fearful that more complications or family crises may arise preventing or delaying me from this uncorking. I am also weary, weary and weary. It is not that the healing, the joy of Anna's new found health and the breaks and times at home now are not rejuvinating. It is the weariness of the length of time of all of this. It has been a long haul for me to give and give and give. The weariness comes from the part of me that needs change, freedom to move and create and periods of deep inward time. It will take a while in my own space for the weariness to leave.

And then I taste the weariness. The first thing that comes to me is how it connects me to other women. It is the feminine, the mother that holds the sick child and nurses with every drop in her breast. Every mother has felt the weariness, the tiredness that comes with the infant up at night and the lack of sleep. The worry about your child from early ages into the teen years. There are times when you just want to shake it off for just a moment but the love and connection is so deep you never, ever would. This mother earthness is apart of us and necessary to keep it all going.

And here we are. It is a good week. The sun is shining and we are in our schedule of pulmonary rehab, blood draws, walks in the lovely weather, eating out (and eating too much). We need more winter but this taste of Spring has been so nice. Anna is wondering how her life is to unfold and is learning a new way to be. I am carrying my restlessness and weariness in a bundle at my side, reminding me to keep stepping forward. We are getting there.

We Are So Blessed

2011-01-19T08:30:00.000-08:00

Five Women, Blessed By Life and Its Gifts, Japan, Oct. 2009

Our week began with celebrating the January birthday of our twin friends, Ana and Isa. We were treated to a traditional Japanese new year dinner made by them. It was fun and delicious. It was also Anna's first evening outing. And even more importantly, it was the first time after getting out of the hospital that Anna and Ana and Isa did not have to be concerned about CF cross infection issues amongst each other as there were no infected CF lungs in the room that could pollute the party atmosphere. This is a very monumental shift for them and their friendships.

Our gathering was a celebration of the miracle of becoming 39 years old for Ana and Isa and the miracle of new life and a new year for Anna and our family. In the photo above I am in Japan with Ana and Isa and two other CF moms, Rumiko and Mrs. Adachi. Sadly, Rumiko's daughter was unable to receive the blessing of transplant before she passed away from CF. Rumiko celebrates the miracle of her daughter's life everyday and is involved in the CF community in Japan carrying the beauty of her daughter with her as she reaches out to others. Sitting in front of me in the photo is Akihiro's mother who on Christmas Day, 2010 was the first CF patient to receive a double lung transplant in Japan. The Adachi family is experiencing this miracle now and we send our love and prayers for continued healing.

At the party we learned more about the completion of the the film, The Power of Two. (A powerful and excellent documentary about Ana and Isa as double lung recipients, organ donation, Japan's cultural issues about transplant and the miracle of transplant). Ana and Isa just returned from a private showing for the music artists whose songs are in the film. Most of the artists did not know anything about the film prior to the showing. The feedback was very, very positive. It was considered engaging, moving and informative. Anna Modlin was considered a central figure in the film as she is shown pre transplant suffering from her lung disease waiting for her miracle gift. Everyone wanted to know how she is doing and they want her to travel with the film as it goes to film festivals. Time will tell if she will be able to do so.

I wish I could say, it will be opening on a certain date and time to direct everyone to see it but we must wait for film festivals and other opportunities to open up for its debut. But, please watch for it in the next year. At the private showing two artists performed songs that are in the film. One is by Sara Melson. We were emailed this song while Anna was in the hospital. We had heard it once before when we saw a preliminary viewing of the movie but did not remember it all. It is an amazing song that is tied to Anna's appearance in the film. When we could really listen to the words we realized it sounded as though it was written just for her. We had deep cathartic cries while the IV's beeped, the nurse interrupted and the hospital thing kept going on. We could feel it coming...... She is so honored to be able to associate her story to this song. I have included a link to the song for you to hear and see the music video. Click on this link.

Sara Melson, Feel It Coming

To learn more about the movie, if you have not seen this before, here is a link to the current trailer for the movie.

The Power of Two Movie Trailer

We are so lucky and so blessed by life's gifts........... Isn't it all so amazing?

Happy Birthday Ana and Isa and again, Happy New Year Everyone!

Working on Chapter Two

2011-01-19T06:28:00.000-08:00

now eight weeks, two days post transplant....

The idea of normalcy is growing, like a plant. A plant? Yeah, the roots are there from the past, the shoot is coming out of the ground where it was dark and dirty. We are wiping our eyes of the residue and the leaves are unfurling, like a plant. Some times poetic metaphor sounds kind of dumb, like a plant or like a lotus. But it is useful when you want to convey an image. I think that is why we do it even though sometimes it seems so trite.

Anna is now transitioned into her condo. After a weekend there it did not make sense of her to move back to the apartment. She is mastering her stairs and that is making her legs stronger and her stuff is there. So there she is like a Sees candy in a box. A Sees candy in a box? Yeah, she is a sweet thing surrounded by her sweeties (cats, Milton and Jack, and her Casey) like a Sees candy in a box.

Being back there is awakening the routine of old. It was in Anna's condo that we were doing the waiting, the treatments, the O2 etc. No more and being there it does feel so strange. Now our normal is a new routine. There are times in the day when a bell goes off and you say, "time for treatment!" Wait, no, no more. And yesterday, another remnant of the past was found in the cupboard, her pill boxes with the regimen of CF gathered for the day to day. All pills were removed to their former bottle homes and the old boxes were dumped. The new pill routine has its own new box. I have not been dumped yet but I am looking forward to the day. I told Anna, "when you are making dinner for me, I am leaving. That will be our marker." We will see what week 12 will bring, hopefully more independence and Anna being able to drive.

We came back from our weekend break to this routine with other musings to think about. Anna and Casey are making plans for future adventures and Doug and I were thinking about other real estate, buying rugs, planting gardens, miniature horses to raise, and other fun things. As Anna said, "thank God we are moving on and thinking about other things!" And, early yesterday she declared, we are now in Chapter 2, "Play Hard"! OK!

Now, we all have to tone and get fit to do the Playing Hard part of chapter 2. On Tuesdays and Thursdays Anna and Steve work out together at rehab. Each time they are stronger and improving. I am trying now to get into the act and starting to stretch and care for my poor old sore muscles and bones. I am going to have to catch up to Anna who I am sure will surpass me at some point. And won't that be great like a dream come true............. (my favorite metaphor).

Normalcy

2011-01-15T09:32:00.000-08:00

Just short of 8 weeks post transplant......
I changed the heading to the blog.........

A little bit of normalcy. What are the reminders of normalcy? Is it the coffee brewing with the aroma of fresh grounds waking up the morning? Is it the little things around the the house that make you smile and remember where they came from? Funny how seeing a little thing on a shelf can flood the mind with a story. Did it come from the garage sale two years ago when you were just out and about or from your favorite store that had a clearance sale? Maybe you got the best deal ever and will never forget that moment.

I see the little pig on my stove in Murphys. Happy times fill me. It was at a garage sale not far from here. A pig collection was on display spilling out of the open garage. Ladies who knew each other greeted each other with, "haven't seen you for a while." That is when I saw the smiling pig. He said, "take me home". A woman a little older than me told me that everyone gave her pigs because her husband was a cop! Funny, her friends kept giving her these gifts with a chuckle in their hearts. I thought that was so cute. I just had to have the little pig that made me want to do a little jig. Now I see him sitting there always to greet me when ever I am so lucky to get to Murphys. That is a type of normalcy for me.

Being here with my hubby is normalcy. Anna is home with her honey caring for her. That is normalcy or the way it "should" be. We have a weekend away. Anna is now well enough with no more home IVs or aerosols or any other appointments until Tuesday morning. It is as though the sun came out and offered a reprieve to the darker days. We know we are not out of the woods yet but things they are a changing. They are changing for the good with movement toward normalcy.

Things will always change. This is the one thing we can all be sure of. When we are in our darkest moments, that is one thing we can think about to give us comfort, "this too will pass". This is one of the foundations of Buddhist thought. All things change, all things are impermanent. This idea and this truth of nature and the way things are helps one to go the full circle. Some times the change is not what we want it to be but it is change. Alongside one undesired change will be another that is desirable. We just have to look for it, recognize it and it helps to accept it all. It is like the winter we have outside our windows. The beautiful leaves are gone making all things look barren yet the silhouette of the the tree's limbs reach out to the sky in such an intriguing sight. It is beautiful in its own way.

I love the winter and being in nature where I can see it, feel it and hear it. When I stand outside I can hear the silence filled with a swollen creek. The flow of water over rocks that have been there for many, many years, perhaps even hundreds of years. I listen to the swoosh and constant movements of each drop and think of the Miwoks who lived here and ground their acorns in the holes beside the creek. I can imagine the little children up to mischief splashing near their mothers.

I can imagine the hundreds of deer that once roamed on the hills. I sense the peace of the ancient ground of this place. That was normalcy for the peoples that used to live here. So much time, so much destruction, so much pain and sorrow, so much rebuilding, so much change has come and gone and yet I get to stand here and revel in the beauty and love this moment. I am grateful, grateful for it all because it just is the way it is. I will try to be kinder and gentler than my peoples' history that contributed to the pain and destruction. That is all I can do about that. I can not change what happened then. I can now honor the story and seek a better way, a better way to preserve some of this for others to come. For sure I am part of the change and impermanence this place represents. I am here now but will not be one day. Once again, I love this moment.

Normalcy is a personal and very relative term.

ART

2011-01-12T06:44:00.000-08:00

Tuesday Anna started to notice the prednisone taper. She was feeling tired, a little lethargic and potentially grumpy. That is what can happen when you get off the miracle drug. Prednisone has saved Anna's life many times and has been an important part of her therapy through CF and now is vital in transplant. Prednisone is one of the key immuno suppressants that will keep her body from rejecting her new lungs. Eventually she will taper to 5 mg per day forever. So, the mood swings and changes will be part of the adjustments to this new life.

After a day of Stanford, again, and then pulmonary rehab at Sequoia where Anna teamed up with her buddy Steve to "workout" we ended the day with another plate of great food. We sure love to eat. As we chewed and talked I began thinking about what type of art project I might create when I "get my life back". Anna said, "You have not talked like that for a long time." I concurred and thought about when the last time was that I entered my creative world. Anna chimed in, "I know when the art stopped. The last day you worked on a project was the day I helped you set the rebar in the form to start a new sculpture." Once I thought about it I realized that she was right.

It has been about 2 1/2 years. A remarkable length of time since I have been able to really be in my studio and freely create. How could that much time have gone by? Now I remember. I set that rebar to begin a sculpture of a woman representing bounty, fullness and prosperity. It was to be one of my concrete series of mosaic women. It sits in my new studio in Livermore waiting for me to add the wire mesh, more rebar, concrete, and creativity. Perhaps the theme of abundance is more appropriate now after all I have gone through in the past 2 1/2 years.

I left the beginnings of the sculpture in my Palo Alto garage when I flew with Sara to Rome. We visited the magnificent city and Venice and then traveled to England. We had so much fun. I left her there for a quarter of study at a university. On my journey home I was in the Dallas airport when I called home to say I was on my way. It was then I was told Mom went by ambulance to the hospital. This is what greeted me. My mom was on her decline toward her exit. The next 8 months with Mom were so difficult. She had migraine headaches that destroyed any positive experience left for her at the end of her life. But, not only was I dealing with Mom, Doug's mom had lymphoma and was heading for her end of life struggle.

By December of 2008 both of our moms had suffered through months of disease and needed so much emotional support. Doug, me and Roxy drove to Reno to be with Renee and Doug's brother and wife to help her transition to her death. We were with her as she took her final breath. It was an honor to be able to be there for her. But it was true, at that time, it was only a part of the drama of our lives. The difficulties continued. Making space for art creation continued to be impossible.

In 2009 my Mom, my dear sweet mom had so much discomfort due to her headaches, and what I also diagnosed as "heartache". We visited the neurologist frequently and tried so many things that never worked to give her relief. In April of that year she fell at her doorway and broke her hip. I ran to be at her side and got there just as the emergency team was wheeling her toward the elevator. We met in the ER. I could see that this was it for her. She had found her long desired exit. Mom's hip surgery was successful but healing would require effort and determination to get well. She did not have that. She told my sister, Sue and I that she did not want to get well, she wanted to go. That was on a Wednesday morning. By Saturday at 6PM my mom left her pain and loneliness for my dad with her family around her. It was such a gift for her to allow us to comfort her and be with her as she passed.

That period of time also included my Sara being hospitalized twice. She is the healthy one but it was her turn. One of the hospitalizations was on Christmas eve and day, 2008 and the other was just as she was to begin her senior year and needed her appendix removed. Drama, drama, drama in our family. We all wondered when it would ever end. And it did not!. Of course next Anna began her decline and we decided it was time to move. You guessed it, any time for serious art making? No way.

So here we are and this blog has chronicled the drama of the past 6 months including my two surgeries, one on my knee and the little one on my face and of course, Anna's transplant. Will I ever do art again? I hope so. Last night we got out some art supplies. We don't have much with us here but I made a collage. Finally, some creating with images and color. It is of course a collage about the transplant. One thing that strikes me about it is that we have been through so much that has been so difficult, painful, sad and all of it but you do not see that in the collage. It is curious to me. Our life has not been all about all of that hard stuff. We also have had lots of fun and good, good times. So, I see hope in this image. I see spirit. I see family. I see new life. What a relief. Maybe the tide is turning............

Anna says to me this morning, "Mom we are in a new chapter now. I think it is time to change some things on your blog. We are moving on." Thanks Anna. I may do that.

The First PFT Post Transplant.....

2011-01-11T07:26:00.000-08:00

Seven weeks post transplant on Monday and a clinic visit..........

"OK, here I am in the fated PFT room and chamber. This is what I have been dreading, the 'numbers'. The numbers have determined my fate forever. The numbers determined my eligibility to the T list. And now, this is the moment with my new lungs, the first base line number of a PFT."

"OK Anna. They can not hear my thoughts. They don't know that I am sitting here saying to myself, #@$!!&%$#@#@!!!!! But, I am. I am getting ready. I can't get away without doing this. Here I go."

"They say it will be OK. They say I should not worry. They say my numbers will go up over time. Oh what the ......... time to lighten up and do what I do."

"Breathe in and blow, blow, blow"

"Keep it coming, blow, blow, a little more......"

"OK, I did it, and I did not cough. I do not feel like holy crap after. I can breathe. Amazing."

"They say, no obstructions. They say it looks good. Can it be?"

"Hey PFT, maybe we can be friends, after all."

" Not bad, not bad at all."

Anna's first pft was an FEV1 of 66% and the small airways at 109%. Pre transplant it was FEV1 of 28% and small airways were at 9%. FEV1 is how much air you can expel in 1 second. This is a critical number in CF. Great place to start Anna. The lungs are working. They just need to expand more and be worked. We look forward to seeing progress in the PFT room this year rather than the dreaded drops as CF progressed. Wish these numbers could no longer be a determining factor but they will be. They will help to determine how she is doing and whether she has some rejection. It is just the way it is.

Bye Bye CF Stuff...........

2011-01-07T20:49:00.000-08:00

It never ceases to amaze Anna that her O2 sats hover at 99 to 100%
She found her sat meter today and just had to check.

(After a day or two of rest my virus left, energy returned and I returned to Sunnyvale.) Today was a very good day that started out early. We had to be at Stanford by 7:30AM for a blood draw. Then, we were up and out so went to Hobee's for breakfast. Anna ate a large breakfast. What was just a few days ago symptoms of slow gastric emptying now seems to have eased. She can eat well with little discomfort now. Another sign of healing for sure.

We went shopping for fun after eating. While in the store I got a call from the nurse coordinator. Anna's INR level, blood clotting factor or coumadin level was way high and so was the prograf level. I was told, "don't let her near knives, or let her fall or bruise today." Oh, OK, no knives. I felt that I was in charge of a delicate china doll more than ever. I hovered over Anna and watched every move. This balancing act of medications, blood sugars, digestion and healing is tricky. One day it is on the mark and another it is off. I suppose it will still take a while to get the dosages perfect. So, we must have blood draws Sat, Sun and Monday too.

The big event of the day was O2 pick up! Finally, today, Anna and I ventured to her house to see the kitties and get rid of the bulky liquid oxygen tanks. There was also some ceremonial throwing away of unneeded medicines and putting away, The Vest. Never, never again will Anna have a percussion treatment. Never, never again will she fill bags with mucus filled tissues. Never, never again will her day be determined by the schedule of aerosols and Vest and pounding and coughing and spitting........... Never, never again. Her home is now rid of those CF reminders.

(To be honest, if one day she enters chronic rejection she will need O2 again and some aerosol medicines will still be in her transplant life but the major part of her CF lung pulmonary toilet life is now over, forever.)

Yes, today was a good day. Each day healing is happening. It is wonderful to see. So great to get rid of that past yucky part of CF life...............

And today, we laughed, we laughed so hard, so much harder than ever since transplant. It was an amazing experience. The laugh was only made of air. There were no subsequent coughs. It was trans formative. When Anna was a little one, if I thought she needed to cough out crap I would tickle her and make her laugh producing coughs and coughs and being out of breath. As she grew older and more compromised her laugh coughs became more and more profound. But now, you know what, she can laugh and laugh and enjoy the jiggling, the spasmodic breaths of joy and stop without turning bright red or purple because the laugh caused the cough of the century and the need to gasp for air..........now only joy at the humor that is in life.

Oh Geeezzzz and Oh My

2011-01-04T12:29:00.000-08:00

Winter Gardening

Grasses and perennials pruned
Wearing their haircut
Trim and neat
Bearing the memory of Spring to burst forth one day soon

6 weeks post transplant.....

Yesterday when I woke up my voice sounded like a frog. Well many times I have mucus throat, or hetero zygote (gene carrier) CF phlegm that accumulates in my throat. After a little while the thick stuff loosens and goes away. Well my voice was funny all day and even after sucking on zinc lozenges I still was gravely. So, virus? Did not feel sick but Anna was nervous and so was I. Doug and I made the switcheroo........ I came home and he went the other way to take care of Anna until I am virus clear. Guess I do have a little something that is trying to take hold. I am kicking it though. But, did I give it to Anna? Time will tell, but she feels we are so good at washing hands and being careful that there is a good chance she is going to be fine. I hope so.

So rest for me. Ahhhhh. Where my heart is at Anna's side helping her going through all the hoops and loops, it is good for her Dad to be there too. His work has been so supportive and wonderful. We so appreciate the compassion and understanding he has received to get through this period. It is really quite remarkable. We do not ever take these kindnesses for granted. I am so glad that we have this flexibility so that when one of us does succumb to the nasty scourges of viruses we can spell each other.

That is the Oh Geeeeezzzzz part of this. Oh Geeeezzzzzz that I should have the audacity to get something like a virus to keep me from doing "the work". Shouldn't I be better than that? I should never need someone to step in for me. I have had to learn about this way to receive in this past year more than ever before. I have to let go and let it be even though I do not want to. I prefer more control, really now.

But, since I was home I got to receive an Oh My! I asked a neighbor to help me with getting a gardener to do the winter pruning and weeding as I have been so unable to care for the home front. My lovely and kind neighbor has a friend with a gardening business who agreed to do the necessary job for me and they arrived this morning. So wonderful to have women who understand plants, gardens and a fine sense of aesthetics. So wonderful to know these women were caring for my garden while I was resting warm inside. So wonderful to discover they were giving this as a gift to me. I fully expected to pay them for their work but I was told, "you have been going through Hell and dealing this for such a long time. This is our gift to you." Oh My, my eyes swelled with gratitude tears. Such kindness and nurturing from lovely women. I can not tell you how precious this was for me. I have worked so hard for so long fighting CF and all of it and this is the time in my life that it has all come to a head with the transplant and I need this type of love and support so much and it is being offered. Oh, so great, so great. Thank you, thank you.

It is hard to ask when we need help. It is hard to receive even when it is lovingly given. It is like a feeling of embarrassment. I should be able to do it all myself. I should be strong enough. I should not show how vulnerable I am. I should not trouble any one else. I should rise above this. I should walk on water.............. This time I can not. I just can not. So, I have had to ask, I have had to blog, to share about this journey and to be vulnerable and open and see what that is like. It is embarrassing sometimes when someone says, "oh, I love the food you have been eating. The pictures were great." Then I know they have read my blog, know what is going on in my life and I can not hide. But, I put myself there. I am doing this sharing thing. When the embarrassment arises I look at it, feel it, and then I do not hang on to it very long. I have always honored openness and I do know that I have needed to develop more vulnerability in my life. I think that is happening. It is helping me to trust more as what is occurring is kind people are so actively involved in my life. I am receiving the help that I need and it is just so, so wonderful.

Medical update: At Anna's clinic visit yesterday we could see more progress. Anna's creatinine level was 1.0, completely normal kidney function! Everyone was very happy. Anna is needing to adjust blood pressure medications now as the increase in prograf is causing it to rise. But the way transplants are treated is one medication is given to counteract the side effects of the other. It is all a balancing act. Anna just needs to follow orders and take the "damn" pills. They are what will keep her lungs from being rejected. She was also told she just needs to come for clinic once per week right now. Dr. Weill is also putting off any bronchcoscopies. He does not want to do anything invasive at this time as she has been through so much. From his perspective "bronchs" have not proven themselves in studies to be very helpful in determining rejection in comparison to the dangers of the procedure. Other signs such as a drop in pulmonary function, fever, or shortness of breath are better indicators. This is so interesting because there are some transplant centers that do many bronchs and others that do none. There is no one right way to do all of this care. It is up to the discretion of the docs. Must say, we have been very pleased with the attitude and care at Stanford and feel Anna has received the best.

Anna is getting stronger every day and we no longer carry the wheelchair around with us. Go Anna Go..............

Today was the first day of pulmonary rehab, tomorrow is a cytogam infusion to ward off the CMV virus and Thursday is endocrine clinic. (Actually Anna's blood sugars have stayed well in control and she has needed little insulin.)

Touch

2011-01-03T05:10:00.000-08:00

Crows Touch The Gray Sky Of Winter

Meanwhile.........

When you are touched by someone you are healed in a very curious way. Touch, touched by a story, touched by a hand, in some way we need touch. It is why we are curious about others and their lives. We do not even know how much we need touch. Our soul seeks it. We need connection through friendship and the intimacy of sharing our humanness. When we are touched by listening through reading or hearing or seeing something real and unveiled by another, we find ourselves. We find those hard to reach places that want to be touched within ourselves by ourselves. Sometimes it is only by mirroring and revealing one to another that those lonely doors in the outbacks of our hearts and minds can be opened.

Touch is also a craft and an art. Touch is what is in the art you look at and go Hmmmmmm. Touch is what is in the human story that you follow and can not stop following. Touch is also in the fingers of someone who gives massage. Thank goodness for those that are talented in the art of massage. Massage and touch to my body deep in the muscles has always been important. Dad and I used to give each other massages. He loved a deep and strong hand digging deep into those strong shoulder muscles of his. I always loved it too. Sprawled on the living room floor we would rub each others back sometimes using those fun implements made of wood and stone to dig deeper into the muscles that held and held and held what needed to be let go of from the day or days or weeks past.

It seems that is what we do, we hold on. We hold on for dear life. This life is so many times like a roller coaster ride. Up , up, up and then when you least expect, swoosh down, hold on, hold on, it is wild. You may not make it there unless your grip is tight, the knuckles white and bones in a grip. The result, you got there and you got there because you think that that holding on prevented you from sailing out of the chair through the air and thump on the ground. Was it the holding that prevented the thump or was it that you would have gotten there any way if you hadn't held so tight? Oh, it must have been our mastery of the holding on. We must have some control and way we stay a float in all of this craziness. Or is it?

Yes, bless those that give massage, deep and loving touch, that helps us find the places we are holding and just won't let go, so that for that hour we can open those tight knuckles and bring color back to their white ghostliness of tight hold. It takes so much energy to keep holding onto the grip and yet it is a gentle reminder of soft music, warm oil and kind hands that helps us relax and renew. Those that know how to offer this type of healing through the touch of the fingers and hands give also of their hearts.

Every time I have a massage I tell myself, "if you can have a massage every week, you would be a changed person." That may be so, but have I ever given myself that luxurious opportunity to indulge in such a rich gift to my body and soul? No, and why not? That is the mystery to all of this isn't it? We need touch, and we find it through our ways of connecting but we never find enough. We keep needing more and more. This seems so human, so common. But yesterday, I did give myself the gift of massage.

Doug and I have found an oasis of healing and comfort that has helped us so much during these storms of the past year. We have found a wonderful healer that offers us such compassion and caring when we enter her healing room. It has helped both of us touch ourselves, let go of the white knuckles, find the breath that releases the holding, feel the warmth of the heated blankets that softens the tight tummy, and totally release, at least for a short time. To lay on her table with the soft blankets covering our vulnerable selves we touch down softly and land where we can trust another to sensitively touch our bodies. Giving ourselves this gift of allowing touch and the movement of her fingers on our backs, arms and legs tells us we appreciate our work, our hard work, our commitment to getting done in life what needs to be done. There is such a satisfying feeling to being so tired from your life that you are spent, totally spent, you have given your all and then angelic music, fragrant smells of flowers, warm oil and firm and gentle fingers find those places where your work is still in your body and invites you to let it go.

That hour of touch is so amazing when you have found a masseuse who you want to be your friend and is talented, loving, caring and full of heart. Thank you, thank you Pam.

Happy New Year 2011

2011-01-01T17:21:00.000-08:00

The best way to start the new year........... sleep in and eat. It is cold outside and a day to relax. Breakfast started the day with pancakes and cherries and pancakes and apple pie slices. Lunch, well, that was so fabulous, fresh crab mixed with a little green onion, mayo, lemon, and jack cheese on a baguette and broiled til warm and melty........... oh my..........

and of course for desert, marshmallows roasted on a fire in the vineyard............. oh this is going to be a great new year!

My Miracle Seems Real Now

2010-12-30T15:39:00.000-08:00

When Anna was little after being diagnosed with cystic fibrosis we did not know how long she would live. The idea that her life could be saved through a lung transplant was unthinkable. And here we are now, miracle on order, miracle received. Our hopes and dreams for a future for our child, now a smart and capable young woman can come true. Remarkable!

5 weeks, three days post transplant......

It is Thursday and what a difference each day is making. The healing is in full force. Anna has no more leakage (except for a little via the picc line hole, getting less everyday).......... a big milestone to cross. She felt wet for so long. Creatinine is at 1.2, normal, and the kidneys are functioning fine now. The puffiness that turned Anna into a human marshmallow is lessening a lot. Yesterday in the morning Anna said, "I am just going to enjoy my morning coffee." That sounds like something unremarkable to most people but it is probably the first time she has ever said such a thing. For so many years now her mornings have been a struggle with treatments, meds and cooking a high calorie breakfast everyday, non stop. There has been no time for "enjoying a morning coffee." Life is changing.

After morning blood draw today I suggested we do something at 9AM. Anna said, "we can do that? We can just go and do something? That sounds so normal." We went to Barrone's for breakfast in Menlo Park. We placed our order and the waitress handed us our number, the fabulous number 22! Remember Anna received her lungs on 11/22. It felt as though our mojo and magic was visiting us once again. A relief and a treat creating smiles on our tired faces. After a little rest and nap at home it was time for lunch. Anna was craving Pizza My Heart.......... Ok, lets go out again. Two meals out, breakfast and lunch. Casey was with us. We took him home and as we drove away Anna said, "Hey, let's walk around the park!" We did. Her energy level is fabulous today. I am sure she is going to be running circle around me as she should one day soon.

We are healing, I am still exhausted (call it, tired to the bone, that will require an extensive vacation in say, an exotic location?) but encouraged that things are going to get better, quickly. Let us hope there are not too many turns in the road. There still can be surprises as Anna's meds are adjusted, her blood clot resolves, her blood pressure returns to normal and her body makes itself new. I would like to think that all of the troubles that Anna had in the beginning burned up the bad stuff that she might experience and the only things we will see now are forward progress.

Doug and Sara are taking care of our Murphys home this week and tomorrow Anna and I are going to Livermore! I get to go home! We will stay until Sunday and then we will return to begin a busy week with clinic appointments, infusions, and pulmonary rehab.

Tomorrow is New Years Eve and we are ending this year with hope and optimism and beginning the new year with new lungs for Anna, the hardest parts behind us and a deeper sense of our capabilities and the joy of being so well supported by people who have cared about this journey. The world looks bright. We are grateful to the donor and their family and all of the wonderful medical professionals who cared for Anna during these critical 6 weeks.

May you have a fabulous New Year filled with Love......
I do believe that is the key ingredient.
We all need love and connection.

Watch Out, More Gross Photos

2010-12-27T20:23:00.000-08:00

I realized that I never shared the photos of Anna's lungs given to us right after they were removed from her. If you saw the lungs after 5 weeks in Pathology and are still interested and not too grossed out these are fresh and whole. They are injured and well worn lungs that kept my daughter in this world fighting daily against the clogging mucus that lived in them...........

Turned the Corner

2010-12-27T15:21:00.000-08:00

5 weeks post transplant..............

First, let us not forget our friend Akihiro in Japan and send he and his family prayers of recovery and the fulfillment of the miracle. We hope that he is healing well.............

Today we left the apartment at 7:30AM to get to Stanford for blood draw, chest xray and transplant clinic. Also waiting for a clinic visit were Steve and Stephanie and Michelle. So good to see them. It was great for Anna to compare notes. Steve had his transplant one month before Anna and Michelle had hers 12 years ago. We have such a wonderful community of CFers who have been able to beat that cystic disease and take a chance on new life through transplant with new mucus free lungs.

Anna's clinic visit was so positive. They believe that she is now doing great. Creatnine is at 1.4 and her INR is below 2 now so that she can have the dialysis catheter removed tomorrow. She has been released from coming every day. Tomorrow we have the procedure at 9AM but then we do not come again until Thurs AM for blood draw and not again until Monday for clinic. Wow, such a difference a few days make. In celebration Doug and I took Anna out for lunch. It was the first "normal" thing we have done since before the "call". The food was delicious and it was such a wonderful relief. It is time now to say, "We are on our way! Anna is in recovery and will be having a new life with experiences of good health she can not even imagine." (Transplant will continue to offer its challenges to health and well being but it will be different than the past years of chronic lung disease that is for sure.)

While in the restaurant it was so striking that just a day or two ago Anna was feeling poorly, too weak and leaky to do lunch out. How did it change so fast? Things really are getting better. After lunch we met Casey at Pathology to say good bye to her old lungs. It was time. With the good news of the morning it felt like the timing was perfect to see the destroyed, end stage lungs and say adios amigo we are moving on........... It was clear to see the lack of health and vibrancy in the old wind bags. They did their thing giving Anna life as long as they could. It was clear that Anna, did need a transplant. The lungs were sliced up for research and investigation like, did this person really need this surgery? I think the answer was, yes. We could see the mucus and Anna enjoyed squeezing those puss pockets to see the slime emerge. I know that is gross but it was so satisfying. What was also special was that she saw her new Xray and compared it to her old one to see how wonderful her new ones really are.

Christmas Miracles

2010-12-26T11:48:00.001-08:00

Akihiro
A True Christmas Miracle

We got home on Wednesday afternoon, exhausted. The next day was spent trying to begin our recovery from one month in the hospital and adjusting to all of our new routines that we have. We also had Xmas to prepare for. Well, we did not do much but we did wrap a few presents that others bought so that was fun for Anna. Our little tree adorned the room with the gaiety of the holiday and the gifts began to gather around.

The next day we had a visit from Uncle Greg and Aunt Terri. It was so good to be with them and they brought us the best chicken catcitore (sp) and cherry pie we have ever had. MMMMMMmmmmmm. Seeing family and receiving these kind gifts helps us so much.

At first we thought that our Christmas would be missing Casey and Doug due to viruses but as it turned out Casey had been banished from us for a whole week and was better and the cold that Doug thought he had never turned into anything so, our little Christmas Miracle was that we could all be together. After driving to Stanford for our daily blood draw in the early morning Anna and I returned to the apartment with Sara and Lou cooking up some Xmas bread pudding and other wonderful goodies. We had a lovely morning of food and gifts and laughter and reminiscing about the last month and all we had gone through. We were all glad to be done with that chapter but appreciated the love that sustained us all.

Sara, the Christmas Elf

The most amazing thing is that in Japan our friends, the Adachis were having their Christmas Miracle. Akihiro, 20 years old with CF (so very, very rare in the Japanese) was called for his lungs! So, so amazing. He was listed around the time that Anna was but in Japan the waiting time can be so much longer. Perhaps because of the new changes in the law and an increased social awareness and acceptance of organ donation in Japan Akihiro's wait was not too long. We are so excited for him and his parents. Akihiro's surgery was 12 hours long. A very long surgery but he is now in recovery. May he be surrounded with love and support and make it through with few if any complications. We are so astounded at this special, incredible Christmas Miracle!

Anna, So Happy To Be Home

We will continue to go for blood draws everyday until Wed. Tomorrow is a clinic visit and an appointment to see Anna's old lungs in Pathology. Tuesday Anna will finally get the dialysis catheter removed. Anna's kidney values continue to improve. She is getting a little better everyday. Thank you again for all of your caring. We hope that everyone had a wonderful Xmas with their loved ones............ that is truly all that matters. It is there that the miracles are truly found and on a daily basis.

Did You Have A Christmas Miracle Too?????

Final Highlights As We Hope To Leave Today......

2010-12-22T09:17:00.001-08:00

An Xmas Gift From Isa!

Day 30 or 1 month post transplant to the day......

We are awaiting the final word but confident today Anna will be released. Coumadin levels still too high to pull the catheter but it can wait until next week as an out patient. Going home is far more important. Creatinine is still going down. Things are working, sort of. The Tummy needs more healing and etc..... There still is a lot of healing to be done. Being home will help with all of that along with the added ingredient of time.

Here are a few of the lighter side of highlights this week.

A Special Visit From Pet Therapy

Anna's Wonderful Dr. Steve, the surgeon fellow

Finding Cheer In Making Cards And a Few Decorations

The Big Highlight next week will be seeing Anna's old lungs in Pathology on Monday at 1PM. So keep a lookout for pics that may gross you out or may fascinate you..................

Tuesday Update.....

2010-12-21T19:39:00.000-08:00

Another update about getting out of here. Anna's coumidin levels were too high to pull the catheter today so, we are hoping tomorrow morning. I am cleaning up the room, putting things in the car and getting ready for an exit. So, as Anna said, she is going to use a little of her magic to get us out tomorrow. It may be as late as 5 or 6 but getting out is the goal.

Now with no chest tube and being unhooked from IVs Anna can walk the halls without tethers. She is doing better and better and there were no major dramas today and even a little bit of a siesta. So, the blogging is starting to slow down as we wind down on this hospital chapter and seek to go home and REST. We are looking forward to Xmas and a little fun. Then after the holidays our new adventures will continue to be fodder for stories and blogging as we finish the recoop period and Anna learns what it is like to have new lungs............

Yesterday and Today

2010-12-21T09:43:00.000-08:00

Yesterday had its ups and its downs. Down was the blood sugar in the morning that had a hard time going up because everything else was coming up so nothing could be going down until an IV push of sugar brought it up in the right way......... In other words, the morning was a bit difficult. The afternoon was better.

Today, the last chest tube is coming out, the dialysis catheter is coming out and we are scheduled to go out tomorrow! We are ready.......................

A Good Day

2010-12-19T21:23:00.000-08:00

Anna and Jill

Day 27 post transplant......

It was such a medically uneventful day. We are waiting for the chest tubes to finish their draining and the coumadin levels to get to the right place for us to leave. Maybe Tuesday, we hope. Kidneys are doing better with creatinine levels starting to go down. Yes, finally we may be on the road.

We had a special, special visit from Karen, Mel and Jill. Anna and Jill were very good friends at Ohlone Elementary. Two cute girls, now, two wonderful women. So good to see them. Karen brought us hot cider, deeeeelish chicken barley soup, salad and bread, and cookies. It is feeling a lot like Christmas around here. Good freinds bearing gifts, sweets to taste, cider to warm the tongue and belly. Thank you so much....... And then a package arrived from an Elf. Thanks to Melissa and her mom, Lori. So, so nice and appreciated. It contained a Christmas Glee CD (Anna smiled!), fudge, cookies, more cider mix, and more. We feel loved. Thank you so much.

And to top off the day we even were able to watch the Disney movie from start to finish tonight. It was Santa Clause with Tim Allen, a favorite. What a relaxing day at the funny farm. Won't be long until we get out of here.

Hey Santa, Get Us Out Of Here, Please, Before Christmas!

For Me, A Day Off

2010-12-18T20:35:00.000-08:00

A quickie about Anna. Her dear Emily came by today. She arrived as I was heading out. I got in the car with my sweet Roxy dog. We drove home to Livermore stopping at our favorite Mexican Grill for shrimp tacos for lunch, then, a nap and deep hot soaking bath......... Ahhhhhhhh!

Today Anna chose to have some of her "puff" taken off with the dialysis machine. She did not need a regular dialysis but has some retention problems still because of the kidneys, the pred and the blood clots found in her right shoulder and arm. They are not worried about these clots. They were found unexpectedly with ultra sound. Anna has a pic line in her right arm, a dialysis catheter in her right chest and had central lines in her right neck. All of this is an environment that can create blood clots. She is on a heparin drip to help get it resolved. She will take coumadin for a short time after leaving the hospital. Besides that she is on IV antibiotics now for two weeks (we will continue them at home when she leaves). She is still draining from her chest tubes so can not take them out just yet. Anna also is still enjoying the relief she gets from vicodan for the pain from the second surgery but over all she is getting better and stronger every day.

Each day we assess what is happening and things are looking up for a release early next week. So, so hope so. We started planning Xmas and what we want to eat..............

My rest at home today was so needed. I will be back to the hospital in the morning to relieve Doug who is being the wonderful dad and husband today and tonight.

Olympic Training Resumed........

2010-12-17T22:19:00.001-08:00

The Holiday Spirit At Stanford Hospital

Day 25 post transplant.........

What is the greatest gift? Friends who get it and come to see you and encourage you. Lisa and Patrick, Anna's CF transplant buddies from CF Retreat came to see her today. What a boost this type of visit is. They exchanged war stories and then Anna could see them in flesh and blood and realize that she too is on the other side. Things are just going to get better even though there will be more challenges. So amazing.

And Thanks to Nahara, Isa, Ana and Stephanie for coming by the day before!

Today was "peaceful". Anna had to be desensitized to an antibiotic and had to move to the floor above temporarily. We pleaded to keep our room as it has been the best room we have ever had. It is considered a VIP room when big wigs stay. We can see why. It has wood blinds, pergo wood floor, soft lighting, comfortable seating and it is so quiet. It has made this stay "two" so tolerable.
As the day went on Anna's energy returned and she felt better and better with far less pain.

After we got all settled back at our favorite room and all meds we on board we went for a walk to resume Anna's Olympic Training. Anna walked a brisk 5 laps. He nurse followed closely and measured her oxygen saturation while on the walk. Anna satted at 97, 98, 99 % while exercising! Tears in my eyes. Unbelievable. Before transplant during her "6 minute walk test" Anna walked with 6 liters of O2 and a saturation of 94%. This time, no O2, the giant transplant mask and lugging IVs and drains.............99%!!!!!!!!!!! She is on her way.............

Every Athlete Needs A Day Off

2010-12-16T15:30:00.001-08:00

Day 24 post transplant.......

Today, Olympic Training took a day off. Last night Anna was back in her room after surgery by 9PM. It took a while for her pain to be managed in the recovery room. This procedure was difficult and painful. It was a success though. They cleaned out the space behind her left lung and with some peal and sloughing off of the plural wall the lung is attaching itself to the chest wall. The remaining chest tube will be watched and hopefully removed tomorrow.

Anna's creatinine level today is the same as yesterday. This means that her kidneys are taking care of things much better. It is still some what high and so is her BUN but they do see improvement so there will be no dialysis today as well. This is a very, very good sign. It feels as though we may be at a victory. But let's not celebrate yet. It is possible that she will be able to leave the hospital tomorrow afternoon. What a treat it would be if we were done with dialysis and we never had to visit our local dialysis center like we thought we would have to. One step at a time.

The amount of courage, fortitude, good attitude, and general soldiering through is so much more than Anna imagined it would take to get these beautiful new lungs. If she was told before hand I do not think this would have mattered, as this is truly a miracle that is saving her life and going to give her a life filled with new......... so much, but our expectations would have been more realistic. Today Anna has to re-coop from the surgery and pain overload. So, today Anna said it was a day off from Olympic Training and I said, "Every athlete takes a day off. It is an important part of the training."

Surgery and Olympic Training All In One Day....

2010-12-15T16:04:00.000-08:00

Buff Anna Modlin

Day 23 post transplant............

Today Anna decided that this was the first day of Olympic Training. We walked more briskly than ever around the unit for a total of 7 laps. That is over a mile...... Because Anna was feeling so strong she declared these her first land exercises in preparation for her swimming competition at the next Transplant Olympics. And we were off and ...............

Then we saw the team. Anna is also becoming an olympic peeeeeer. Yes that would be an appropriate category for a transplant recipient with kidney failure who overcame the injury. She is getting better, so much better that they decided to not do dialysis today and to watch her kidney numbers one more day to see how much improvement she has made. Yaaahooooo. That was good news.

And then they decided that she needed another surgery. There is still some fluid behind her left lung so, they are going in laproscopicly to take out the fluid, work with the chest wall to cause more adherence between the lung and chest wall and inflate her lungs to 100%. It is now at 95%. They believe this will solve this issue for Anna to ensure the full use of all of her new lung capacity. They will leave the left chest tube in for another two days to be sure there is no more drainage and in surgery will take out her right chest tube as the right side is fine and needs no other fixing.

Anna Is Amazing, Attitude All The Way To The OR

I had made a chair massage appointment at 1:50 and had just settled in for about 10 minutes when my phone vibrated in my pocket. It was Anna and they were to get her for surgery in 15 minutes. Well that ended that but after they wheeled her away I was able to go back and get a relaxing rub. It helped a lot.

Yes, it feels sometimes or like everyday, one step forward, one step back. But really overall we are moving forward. We just hope that she will not slide backwards from this other surgery. There will be tiredness and soreness but let us hope that is all.

Sara and I are in the surgical waiting area. Sara is crocheting. She is a crafty one and enjoys the relaxation that comes from yarn arts. I am blogging and updating. We are also visualizing Anna in a successful uneventful surgery and the resumption of our Olympic Training.........

Let It Snow, Let It Snow........

2010-12-14T11:34:00.000-08:00

Time for another update. Yesterday was dialysis, Xray and etc.... the usual circus and then Anna slept after massage and I got out for a walk to the shopping center..........

Today, no dialysis, watching the drainage and still healing. Xmas music is on pandora radio with the nifty stereo system Doug set up for Anna....... oh night divine.... oh night, oh night, divine.....
lovely tunes we listen to once per year are filling our private room with sounds of good cheer. Nurses walk in with smiles on their faces and Anna and I are loving the break.

Anna thinks things are definitely getting better. She is eating a bacon, lettuce, mayo, hummus sandwich, good for CF and to help gain some weight. Maybe things are starting to turn around. We need to watch how much drainage there is on her left side. The right side is now clear. It was always the left side where Anna had most of her lung pain or where crackles were heard the most. Guess it was that lung that was the most infected and created the most adhesions to her chest wall. So, may the left chest wall heal and heal and heal to allow for these beautiful new lungs to settle into their new home.

What is hard for Anna is to know what is normal or what is to be expected in this stage at three weeks post. Isa has helped a lot with having been there. She has been so wonderful thinking of us all of the time and asking if we need food, and visiting and cheering Anna on. The nurses help too especially our new nurse with curly hair. She gets the curly hair thing and we use the same Deva Curl products.......... now we are onto a much lighter subject. Ah yes, things are better today and far more sane. Hope it continues and "let it snow, let it snow, let it snow"......... say it again Bing!

Three Weeks

2010-12-12T21:17:00.000-08:00

Day 20 post transplant but not yet post craziness.........

Tonight we were all together celebrating Doug's birthday on Tuesday and we realized it was three weeks ago tonight that Anna got her call. We never expected the intensity of this past three weeks. We are seeking some normalcy and stability so Doug and Casey are going to go to work tomorrow. It is important that we can have a little of what was to get us through all of this now.

Yesterday Anna got her new chest tubes that seem to be working. This means that through this whole surgery experience she will have had 7 chest tubes........ that is a lot. Right after their placement an Xray was taken and it appears that her new lungs took back the plural space that had been filled with secretions. This is good and will be confirmed with the result of a CT done this late afternoon. We are truly hoping for no more surgery but if she continues to drain then she may need some help with that through another procedure.

Anna is peeing a little more each day. She is not at a normal amount yet but at least we see progress. The dialysis will continue. Last night she had to have a session at midnight that made sleeping a bit difficult for me but Anna slept through with the help of some vicodin easing the pain of the chest tubes. Hopefully tonight will be calm and peaceful as sister Sara is spending the night. I will be back bright and early.

Earlier today we had fun, actual fun, cutting out magazines for holiday stuff to make cards. What a good hour or so it was with a few interruptions but not much. As usual we try when ever we can to slip in a little something for us. the night before Anna and Casey tried streaming Survivor and saw it but not without many interruptions. The hospital is not, I repeat, not at place to hang out to be able to do what ever you want to do. You are very lucky to find little windows of calm. Today provided a bit of that calm so that Linda could come a be a chum for Anna.

We also planned a birthday party for Doug with Casey, Anna, Lou, Sara and myself surprising him with chinese take out and cake brought over by our dearest Peggy and Bill. We have really needed some help these past three weeks and there have been a number of friends who have stepped up to the plate. We are grateful.

Hopefully we will be back home again on Wed and there will be no more hospital stays.......

New Chest Tubes........ Let it Flow!

2010-12-11T16:46:00.000-08:00

Trying To Keep Our Spirits Up
As Banana Bunchers

Day 19 post transplant..........

Sitting in the waiting room outside of the floor of Anna's room. I finally got some chocolate. Unfortunately the gift shop was closed so had to resort to the candy machine for Hershey's, but hey, that and some tea with milk are just what I need.

Anna is in the room with Dr. Steve having two new chest tubes put in. Think flow............ We are hoping that the fluid build up from the irritated chest wall will all come out easily. We will know by the end of the day tomorrow how it is going. If this does not work then she has to have another surgery to clean it out. Oh please, can it all be a little easier on my sweet Anna? She is such a trouper. It is time for things to go in her favor.

Dr. Steve tells us this happens and the good thing is that they know how to fix it. It is one situation after another that they fix. So long as the fixing continues we will get there. Anna continues to pee a little more each day it seems. Kidneys are not there yet but hopefully soon. There is that soon word again. It seems to pop up all of the time especially when you want soon to be now. Can not wait until we are looking back at it all and just see the rosy side with energy, good health, lots of time on our hands and breathing deep.

While sitting here one of the docs dropped by to say things are going well for her. Things are beginning to drain. This doc says, "Anna is going to be fine. I see this sometimes where in the beginning the patient has complications then they get through them and sail ahead. That is what I anticipate for Anna." I like that sentiment.

Day One, Volume Two

2010-12-10T21:21:00.000-08:00

Hey Bunchers!
We Still Need You and Your Healing Thoughts!

Day 18 post transplant......

Well, the day began at 7:30AM for blood draws, pic dressing change and chest xray. While in the ATIC we saw Steve and Stephanie. That was so great for Anna. Steve is looking good and has surmounted a lot of hurdles. He was great encouragement. Anna heard him yell to her that week 6 post transplant was good. That helped so much. They are transplant buddies.

We made it to dialysis by 8:30. Anna's treatment began OK but as has happened each time she clotted the line and we had to have TPA injected and wait for an hour before the line was clear and we could start again. The frustration of these things happening got to me today. I see her trying so hard and so stunned that she has this kidney problem that she never expected and then there are these great annoyances. It is hard to keep on keeping on sometimes, but we do.

Because of this there was no time to get to clinic so clinic came to her. The support was wonderful for Anna. She truly feels that they care about her and that means so much. Dr. Dave showed up and reported on her xray. They saw an increase in fluid in her chest cavity and because Anna has had some reports of discomfort with breathing from time to time they decided it best to try to draw off the fluid. So after dialysis we went on to another procedure, a thoracentesis where they try to get the fluid to drain through a needle catheter. There was some success but concern it was not enough so we went back to xray. The conclusion was there is probably new and old blood between the new lungs and the chest wall that is thick and forming a membrane like sheet that needs to be drawn off with a larger port. So............

On the first day of Volume Two Anna is back again, admitted to Stanford Hospital. Darn! Last night she slept 8 hours at home and was doing so much better. At least we had two nights at home to rest some. But her strength was also improving a lot today as well. Anna told me that she was not scared about this, that this was just one of those things that happens and you have to take care of it. Apparently this happens to CFers with transplant. The old CF lungs adhere to the chest wall and cause a lot of abrasion. It takes a while for this to heal. So, extra bleeding can happen. Again, this amazing team of docs is not worried and they feel that they can deal with this and we will move on. So that is what we will do.

Doug volunteered night duty again. He has been so fantastic and has enjoyed those late night times with Anna in the hospital. Since I am the early bird it helps me to sleep and arrive around 7 to relieve him. Anna is so much more herself now. It will not be long until she will be able to spend night times with out us but for now it helps her with moving around, remembering things and to just have support with one of us there in the night and around the clock.

Hopefully the procedure will happen tonight or early tomorrow so that the healing can happen and we can return home again. There are other CFers that are in the hospital now too that Anna knows........... she sends her best to them all.

End Of Volume One!

2010-12-09T14:23:00.000-08:00

A Treat For The Last Day

Day 17 post transplant...........

We are home, at least at our temporary home. Anna's bed is set up in the living room area so that she can be the center of the universe which of course she already was. This is working well for taking care of her.

Last night as Anna and I drove away from Stanford Hospital in the dark and in the rain we both broke out in tears, a release from all the too much that has been going on. Then we turned onto Welch Road with so much of our life represented there including my OB's office where I learned I was pregnant to Packard Children's Hospital where Anna's health was in the hands of the CF center. What a ......... journey. And then it felt as though we were driving home with a new member of the family, our new lungs. It is like there is a new baby, a new being to learn about and discover.

Anna is doing better each day. She is still weeping on her arms from the excess fluid due to her kidney failure and pred. We have to change gauze dressings regularly to soak up the seep-age. This is annoying as Anna always feels wet. She is peeing more which causes occasional jubulations but it is still a hard recovery. The mood swings from the pred are very difficult as Anna looks for her happiness button that she could access so easily before. Getting used to her new lungs or rather getting used to her old lungs not being there is a process. Sometimes she misses her old lungs and the comfort from the expected and usual. She thinks it so strange to not hear the constant crackle that came with every breath with her worn out CF lungs. The strangely quiet and gentle breath that she has is very odd for her. Many times she says that she does not know how to use them. She feels that she has to learn to breathe again, or for the first time.

After having to be at the hospital this morning at 7:30AM for a blood draw and pic line dressing change we got home by 9AM and have had the entire rest of the day to recalibrate. I jumped back into my pjs and we snuggled in bed to try to watch a movie. Well our attention span was not long. We realized we needed to learn the meds and our schedule better. Being on the transplant meds is no joke. This is what is going to be the vital thing that will help Anna keep her lungs well. She can not miss doses and must learn the regimen by heart. This will not be too hard because she has been doing this type of thing all of her life. It is just all new and our energy has been spent and we are exhausted.

So, we are on our way. We are determined that this kidney situation will turn around and soon she will have happy kidneys again. We are all very grateful and stunned with how difficult the past weeks were. The intensity of this surgery, being in ICU with everyone else in critical care, the need for dialysis, the ups and downs, the confusion from the meds, the enormity of it all overwhelms each of us in our own ways. At least one of our family holiday traditions was upheld last night after we got home. It was the last night of hanukkah and we never had a chance to participate in the lighting of candles in the hospital because we were so constantly involved and busy. So, we lit a candle together last night and with our ritual each of us spoke about our gratitude for our family and how we stuck together without a hitch supporting each other and making our way through. We are all stronger for it I suppose. Never want to do these things, they are so tough, but we saw how well we worked together and it was all for love, love for our wonderful Anna who WILL surmount the issues with healing in front of her.

It is here that I feel "volume one" of my blog comes to a close. We waited, we received and now we go on to heal and enter a new life, "volume 2". It is a turning point. I want to continue to share about the process as it still helps me to stop and open the computer and write with the key board. I can think about the day and choose elements that I wish to share or emphasize. I am grateful to all of my friends, family and others who have been interested in our story. I mostly hope that you are moved to support the need for more organ donor awareness and have a greater appreciation for those that make up this miracle including the health professionals. I must say and the family agrees, the nurses, docs, rts, everyone at Stanford were fabulous and we trusted them so much. We are very grateful as Doug says, to be alive in this time when we have the knowledge and science to make this possible and for where we live to have this care so available to us.

So, the next volume will be about, "Go Anna Go, Go Anna Go........."

We Are Home

2010-12-08T22:05:00.000-08:00

We are home. It has been a very long day............ I will write tomorrow. Just wanted to let you know. We are all breathing easier and Anna can not believe how quiet her breath is..........

Almost Out Of The Looney Bin

2010-12-07T22:11:00.000-08:00

Day 15 post transplant.......

Every day in the hospital is busy. No time to rest but at least Anna will be coming home to the apartment, our family crash pad tomorrow! Today was all about preparing for the event. In the afternoon we spent about an hour in training about what this situation is. It is quite stunning to think that we are here, we are on the other side. Makes you go, hmmmmmmmm, wow.

After the hospital preparations Doug and I headed to the apartment to rearrange furniture and get it ready for Anna. It is now ready, a quite place to heal without alarms, and beeps and prods and people constantly coming into the room with their particular discipline giving Anna and very best of care.........only thing missing was, rest.

But, this will be a better place to live even though Anna and I will be very busy. She will keep her pic line in her arm as she will need blood draws everyday. We will also go for dialysis three times per week until they tell us her kidneys are fully recovered. And, we will go to clinic twice a week. There will be a lot of time spent in the car. I also have the wheelchair I used for my mom and a few times for Anna when she had her old lungs and could not breathe very well. Each week we hope that she will get stronger.

One of Anna's obstacles now is that she hates the mask that she needs to wear to protect her from the bugs and stuff in the air. She is just going to have to make friends with that mask. Maybe we will do a little art therapy on a mask and decorate it pretty.

When we do leave the hospital it will feel like we are on the way to a new life, not one with difficulty but one, with lightness and new time.................... it is what we have been dreaming about and wishing about, it is that miracle I ordered.

Monday Night

2010-12-06T20:57:00.000-08:00

Still day 14 post transplant...........

Trying to describe what it is like. While you know and say things are getting better there are all the intricacies that continue to pop up. There is a pic line clotting off so that the necessary blood for testing can not be retrieved until the TPA is used to dissolve the clot. Meanwhile is the annoyance that this intrusion will go on for another hour or two and the worry that if it is clotted off for good then you have to have another procedure to get another line put in. All while you are so vulnerable from it all and then needing a dialysis session taking 3 1/2 hours that becomes 5 hours because that line clotted off too. You wait for the docs to consult and make decisions while you ask questions after your mind has gone crazy with how this is going to be a major interference to you getting better. And before all of that your breathing exercises cause you to do the necessary coughing which brings up your breakfast and leads you to worry about your digestion and the leaks that now appear in your sutures. During this you are trying to process what has happened the past two weeks and all of the craziness when the massage therapist calls and you agree to a short massage that could be better if only you could get up out of the bed into a chair for shoulder massage but the dialysis restricts your movement so you can't. The social worker knocks at the door but you are asleep so can not visit with her about your concerns. Then while everyone is there and a dear friend has come to offer soup and support the pharmacist decides it is time to teach you about your meds you will go home with but you really can't listen to it all because it is just too much and you need to nod off. And the next on service surgeon you have never met comes to see your leaky sutures and introduces himself in the middle of the pharmacist's explanations whose phone then goes off so he excuses himself. As this is going on another friend important to see comes to the door way but there is so much chaos you can not even say hello. Meanwhile Mom and Dad are trying to process it all for you because your mind is not that clear yet and you are overwhelmed and so is everyone else............ and there was more, so much more and it is a blurr and how did two weeks of this crazy shit go by and we are still sane or partially sane and it is not over yet and who knows when it will be and it is all so crazy you can not believe it and you just want to.............................................!!!!!!!!! so, I came home and ate three pieces of toast with butter and raspberry jam, a frozen dinner and wine and chocolate and I am full and this world is nuts...........................

Short Update.........

2010-12-06T14:33:00.000-08:00

Day 14 post transplant......

So, still appears that we can leave on Wednesday. Anna's kidneys continue to improve. Dialysis today, Wed and probably as an out patient on Fri. Then we will see. We want no back sliding. She had a rough morning. The mood swings, pain and indigestion just was getting to her. It is all a lot to take, believe me, but we are headed in the right direction.

Reporting From Home!

2010-12-05T15:42:00.000-08:00

Day 13 post transplant.....

Two weeks ago tonight the call came shortly after 9PM. Doug and I were snuggled in watching a movie, sipping some sherry. Our lives changed. Anna talked about this last night with Dr. Dave. She commented on how she was about to do a treatment and Casey about to shower getting ready for the week when the fateful call rang. It happened so fast. Within 9 hours she was in surgery to receive her beautiful and perfect new lungs. Life will never be the same. The grief process to release the old lungs is now underway as Anna is starting to move from survival mode to integration.

Doug and I are happy to be home for a day. The skies are gray and pregnant with rain. This is one of my favorite times looking out a window with tea and xmas catalogues. We will have a fun time at Christmas this year. Now is my chance to do a little internet shopping. That is about all I will be able to do but I do think we will be in my home baking cookies and fixing a grand feast of celebration.

Linda was caring for Anna this morning so I could leave. Sara and Casey are in charge now. And what is so amazingly important,

Anna has Peeeeed twice in about 12 hours so far.......... monumental!!!!!!!!!!

On Friday eve I had a feeling our mojo had shifted and we were back on track. That serendipity of coincidence began to play with me. I went for a walk and in a most unusual way ran into a Dr. whom I worked for when Anna was born and diagnosed with CF. There was David. He heard how Anna was doing through a friend. I told him it was a gift to see him as I was so connected to him and his department at Stanford where I worked while pregnant with Anna. The life that resulted from Anna's birth was now ending and Anna is now beginning a new life. We embraced. It was a marker to me. We are now moving forward, the magic is starting to connect the dots again............ let's hope so. This very difficult stuff is so hard to take with out some of that magic of serendipity that was so much a part of Anna's transplant journey from the beginning.

We are now on track to leave the hospital on Wednesday............

Early Sunday Morning

2010-12-05T06:38:00.000-08:00

I spent the night with Anna. Sleep? Well, about 2 or maybe 3. She got some, a little more than me. Doing better and PEEEEEEEEEEEEEEEE, ed! We will hope for more today. She is moving so much better and showered and is in street clothes. It is all sinking in...........and I am pooped.....

Saturday, and I Love All Of Your Messages

2010-12-04T13:46:00.000-08:00

This is a dialysis machine that does the job of our little kidneys.

Day 12 post transplant...........

It is much better being here than in the ICU but Anna thinks that home will even be better. You think? Dr. Weill thinks she will go home around Wednesday. This has encouraged Anna. She so wants to be in a better environment. I do too but I still like the professional care and am not quite ready to take this all on. By the time she is home she should have no more IVs, the pic line will be out and hopefully her skin will not longer be weeping her extra fluids.

Anna had a difficult night last night and Casey stayed with her. He has been so wonderful and protective. She said the nurse was great it just is that the pred causes so much restlessness and agitation. It is a wonder drug that has saved Anna's life before but it does indeed have its drawbacks and that is mostly what she is feeling with these emotional mood swings and bad dreams. Dr. Weill has lowered her dose in the evening so we hope tonight will be more peaceful for her.

The drugs for transplant are hard. Not only that, it is all that you can imagine or not even imagine. To be graphic, your chest is opened, your life giving organs of breath cut out and then the DNA of another is place back in, sewed up and........... the mind must go crazy with all that unbelievable stimuli. Why did the body loose its lungs that have been working so hard to breathe and where in the ........... did these new ones come from? What the......????? Anna is feeling all of this as the body seeks to readjust to everything so different including her dear kidneys shutting down because of the shock to the system. The human body and its ability to heal is so remarkable. We are trusting the miracle of life to find its equilibrium. We also trust these wonderful doctors and nurses who do this everyday and Anna's great friends who have been here already and are thriving.........

Anna keeps me hopping from one need to the other so I have very little time to answer emails but I am reading them. I am grateful that you are so positive about being part of the journey even though it is a roller coaster and hard. Maybe from following some of Anna's story you can appreciate the magnitude of transplant.

It is important to understand that the recipients and the donors are all heroes and have given up the ultimate together to create miracles........... So hard, so full of danger and grief and so incredible. Thank you.........

Another part of our story............. As you know, Sara is working in the CF research lab here at Stanford and goes to the lung transplants to pick up the old lungs for research in the lab. She has been in the OR to do this task a number of times now but now after Anna's transplant she has gotten to know Dr. Steve, the fellow surgeon who has watched over Anna. A few nights ago there were two more lung transplants. Sara needed to retrieve the lungs from the first surgery and ended up hanging out in the OR with Dr. Steve and was invited to view the lung removal. This is a remarkable set of circumstances for Sara and the rest of our family. Imagine this....... others in the OR noticed her name on her badge and said, "We transplanted your sister? And you work with transplant? Amazing." It is another one of those interesting intricacies of all of this. As the mom, it blows my mind that Sara can witness all of this with such composure. She will make an incredible doctor one day.........

A Much Better Place Now

2010-12-03T14:55:00.000-08:00

Hi Everyone, Finally Out Of There!

Still Day 11 post transplant............

A sigh of relief. We are now out of ICU in a quiet private room with a wonderful bright window. Doing much better today.

Going to my new room.............

Something normal for once.......

"I look like a fat kid who wants cake!"

Enjoying the escape.......

Time with Dad........

The Sun Will Come Out Tomorrow

2010-12-03T09:47:00.000-08:00

Doing A Little Jig.......
That Day Will Come Soon!

Day 11 post transplant.....

This morning Anna is doing better. She was never able to move out of the ICU yesterday because there were no rooms to move to. There is one today though. Right now she is having a 3 1/2 hour dialysis here in ICU before she moves. She was able to sleep in fits and starts last night. That is a very good thing. She says that she is doing better. The weeping of fluid from her arms and chest has slowed and her mind is very present even though she is very tired. She ate eggs, toast with jam, cereal and milk and OJ for breakfast. That is the Anna I know. So looks like this is a better day.

Must say her dad was so wonderful last night. After a difficult long day in the ICU with all of Anna's issues he looked in her eyes and said, "We are going to do this and we are going to help you. You have to power through and we will support you. We will not give up or leave you." That is what someone in her position needs to hear. There is a reason you are evaluated for transplant. If you do not have a strong support system you will not be accepted. It is crucial and it would be impossible to get through without loving constant support. Yes Doug, We Will Get There! Also, Doug remembers how much Anna loved the musical Annie when she was little and the the song, The Sun Will Come Out Tomorrow! And when it does, we will all be dancing that little jig.......

Update on Thursday

2010-12-02T11:49:00.001-08:00

I wish it was spring 2011 and we were done with this tough stuff
and walking in the wildflowers....

Day 10 post transplant.......

Anna's nurse called me this morning about 8:45. Anna was wondering when I was coming. The ICU visiting hours begin at 10AM. I promised I would be there. We just spent two hours together. Her brain is very, very much better but she said, "this is so hard, the hardest thing I have ever done." Finally I was able to cry. Anna has always allowed me to be able to have any and all of my feelings. We have always been so honest with each other. The tears helped me a lot. Unfortunately, they did not fix the problems she is having. Only time will do that.

I wish there really was magic and an incantation to make it all go away. You mothers know what I mean. You can not stand to see the suffering of your child. It is unbearable at times. The best we can do is comfort, love and allow what ever process is in place to move forward unveiling their own story of life with pain and with love. She agreed that the thing we would like most is to close our eyes, fall asleep and then wake up in about 1 month to all the tough stuff being over.

It helps me to be able to wash her hair with a shampoo cap kit made just for hospital stays and then run my fingers through her cute curls making sure there are no snarls. I also love to help the nurses bring new blankets and attend to all the comfort needs. Anna wanted to walk some so we held hands and I walked backward and she towards me like a dance with gentle steps across the room then to turn and return. This was very tiring for her but she can not stand being still for so long.

A room has been ordered for her to leave the ICU today. It just takes time for them to make the shift. Soon hopefully we will be in a private room again. Keep up the positive thoughts and prayers. If we are truly One in mind and spirit it can only help when so many aspects of the One focus good thoughts on this young woman who has fought so hard to live her life and had the courage to under go this incredible surgery and life transformation. She so deserves this opportunity I just wish it was not so very, very difficult.

A Day Healing

2010-12-01T17:05:00.000-08:00

Anna and Casey, Napping

This afternoon Anna is getting another dialysis. At least she was with her Casey. We are all so tired. Doug and I were invited to nap at the Home Tel across from the hospital by Stephanie, Barbara and Steve. We had such a restful nap. Anna will be in ICU this evening and will be moved out tomorrow (we hope). She is aware of everything and thinking and asking appropriate questions with a few inappropriate ones and with some fog and a little strangeness. While we were with her she remembered on her own pulling out her lines while she was having a dream. Her memory is amazing. We thought she would not know what happened. So, we are moving over this hump. We hope that tomorrow is even a better day.

Just Saw Anna

2010-12-01T11:05:00.000-08:00

I just spent an hour with our dearest one. Her mind is still confused but she is far more present and it was such a relief to see her back to communicating. Her favorite nurses are pouring love on her and taking such good care. I arrived as the team was rounding outside of her room. The plan is to get her mind clear with cutting back on the pred and no more adavan, etc...... She will continue dialysis until her kidneys wake up. Come on kidneys! They are as positive as ever and we are moving forward after our bump in the road. Can't wait until my bright, intelligent Anna is all the way back to clear mind.

The Past Two Days..............

2010-12-01T06:59:00.000-08:00

Today is Hanukkah

Day 9 post transplant..........

The past two days have been difficult as I said. We are hopefully on a new track now with Anna back in the ICU until we iron out the problems. Anna's confusion was intense due to the mixture of drugs, and surgery. She is very sensitive and was really concerned before transplant that this would happen to her. It is not uncommon and will pass but it caused her to pull out her central lines in the night. This was caught by a smart nurse who had set a bed alarm and so it appeared worse than it was. I had spent the night with her so this was quite dramatic for me. We are now putting this event in the past and moving forward as it is one of those "bumps in the road" that we are told happens.

After recalibrating yesterday with new lines and drug adjustments it was decided more minute to minute care was important for Anna so she went back in the ICU last night. The doctors continue to be positive about Anna's final outcome. We are constantly told there are rough patches that happen but they deal with them and she will get better. Our Anna Banana is a dramatic one and this event is no exception. Her first time in the hospital 28 years ago was an intense marathon that she managed to conquer and be named a miracle child. She will do it again this time.

We have to do the best we can to care for ourselves, take turns and power through. Today will be about being back in the ICU waiting room with scheduled 1/2 hour visits. We will fill the rest of the time with walks on campus. And once again, we are offered such wonderful words of encouragement and love. We can not respond to everyone and all messages. We just do not have much to give out. So, here I can say, thank you so much.

Yesterday on my way out to finally get sleep after 36 hours of hospital duty I saw our friend Bruce who told me that Hanukkah starts today and there will be candle lighting in the atrium everyday at 4PM. Sounds like a very nice break in the hospital routine for us. We will try to be there and hopefully in a few days Anna will be able to attend with us as well. The hospital is now decorated for the holidays. We hope to have some fun this holiday season with our family mix of Hanukkah and Christmas. Can not wait to be baking cookies............ We need some of the sublime with the absurd and fun with the difficult and light with the dark.

A Difficult Time

2010-11-30T10:05:00.000-08:00

Day 8 post transplant....

We had a hard night last night but things are better now. More details later. Transplant is rough and tumble sometimes. Please keep sending good healing vibes to Anna. She is on a journey and it will lead to an amazing new life but this is hard now. She will have quite a story to tell. I will write more tomorrow. Hope all is well with all of her loyal and loving Banana Bunch. You mean so much to all of us.

One Week Ago

2010-11-29T05:51:00.000-08:00

Neighbor Notification In A Small Town

Day 7 post transplant just beginning............

It is early and I am just checking in before beginning the day. It will be a long one for me. Tonight is my turn to spend the night with Anna. Hope she was able to sleep last night. Casey stayed with her. Each day has had its own flavor with its own triumphs and difficulties. I do look forward to getting through this week and our complications.

Wanted to post this photo. Peggy of Murphys sent it to me. This was her promise to let the neighbors know who live up the road from us that Anna had her transplant by hanging baloons. It is just so sweet and how you communicate in a small town. Just love Murphys..............

And one week ago she was in the OR.................

Walking to the OR one week ago......

It's A Wrap On Day Six

2010-11-28T20:54:00.000-08:00

Day 6 post transplant..........

What a day this was. It was all about being present for Anna and helping her to connect to what was real. A strange trip to be sure but one she will get through soon.

Linda was with us for the afternoon and that was so great for Anna. It helped to ground her. Meanwhile through all the craziness and confusion she knew a "hot" man when she saw one. Anna eagerly sought to fix up Linda with a very cute nurse. It was a bit embarrassing for him but also quite funny as Anna can usually be.

The highlight of the day was that she had the urge to pee and she did two times! We were so encouraged. That made our day. We will see in the morning if that did anything in the eyes of the docs. She is scheduled for dialysis tomorrow so we will see. Any way, sure feels we are headed in the right direction. She also went for three walks around the unit and ate more solids. So great! It is definitely like a rebirth with all the vulnerability and promise that it would be.

She Ain't No Wimp

2010-11-28T10:11:00.000-08:00

Day 6 post transplant......

Last night things became a little more difficult for Anna with her reactions to the drugs. She talked a lot pre transplant about how she would tolerate the mega high doses of pred. She knew it can make some very mentally unstable. It is hard for her to truly know what is and is not reality sometimes. She has to rely on us to help her calibrate. Her hallucinations include people being different colors, usually purple, and wondering what is going on around her. It is part of this very immense and intense surgery. Again, no one is too worried about it. It is just part of what happens. So, we go with the flow.

Sara spent the night here last night as we do not want her to be alone with her mental confusion. There was not a lot of sleeping happening. Her sister is a hero and is taking the day off today. We will take turns as it goes..............

This morning she ate a good breakfast, cream of wheat and yogurt. We went for a walk in the unit and I was able to wash her hair. Finally there are some quiet moments and she is sleeping soundly. A relief as it is so hard to find any peace for sleeping in a hospital. She will have dialysis again tomorrow as her kidneys are not out of the woods yet. Her lungs are beautiful. So, each day is a step forward into a new life. She will make it as she has what it takes. Anna Modlin ain't no wimp. I can tell you that much............

An Early Morning Phone Call......

2010-11-27T05:36:00.000-08:00

Day 5 post transplant..........

I have always been an early person. I am the first in the evening to say, "I am sleepy", or to crash on the sofa. Because of that I am also the first one to be up. I seem to resonate most with the predawn hours. When I am in my creative mode this is the time that i find my inspirations and my burst of energy to get to work. It is a biological clock that would be best found useful on a working farm when you are up with the rooster.

So, this early morn I am up and reflecting on what just happened. So big, so hard to get your mind around it all. From the experience of end stage disease that turns out to be a hopeful event, to waiting for a call to have a new life, to depending on the generosity of someone you do not know in their hour of greatest grief, to watching the miracle happen as the trach tube is removed and new lungs are used for the first time and to see my sweet daughter's tears of awe as she says to me, "I just can not believe it Momma. I got new lungs. I got good new lungs." What an incredible experience this life has offered us.

Yesterday I realized something else. Doug and I were nearly the same age as Anna is now when she was a baby of 18 months old and attached to a vent and tubing in the pediatric ICU at Stanford. At that time when Anna was diagnosed we had no idea how long she would survive. It was a severe entry into the CF world with her spending 5 1/2 weeks on a vent in ICU. That is how we began and learned about living with this disease. It has been nearly the exact same amount of years to this day that our CF journey has changed dramatically. At that first juncture we were about 29 and now we are 58. That represents two distinct chunks of our lives, the same length of time, in a way like chapters. The first 29 years were pre CF, the second 29 years CF and now we are post transplant and in the third phase of this life in relation to this disease. So interesting to note. The phone is ringing...................

It is almost 6AM and Anna called and needs me. Off to the hospital.

It is tough to go through this alone. Anna needs help and someone to talk with. I am here in my usual place by her bed side being her mom. The morning has gone well. She is about to have more dialysis but they are still positive about everything. Just keep helping with the healthy kidney vibes............. please.

Anna went for her first walk! She also had her first fitting for her new wonderful mask that she will be using for a while. She did really well around the nurse's station and up the hallway. Anna's legs are very strong helping her get up and down from her sitting position. She can not use her arms in any way. She is also now approved for regular food and had a graham cracker. So, we are moving forward.............

Still Improving again........

2010-11-26T17:31:00.000-08:00

Day 4 post transplant.........

We are very encouraged about how it is going. Anna is still goofy from the drugs and sees blue tape on people's faces, green spoons on the floor and little birds flying but at least she knows it is druggy entertainment. Even so, the lungs are fabulous and her blood values for her kidneys have improved "far more than expected". Yayyyy, must be the extra help you are offering. It will be day to day deciding if there is more dialysis. Maybe she is turning the corner now. We are hopeful and feel it has been a very good day.

Being a holiday it is hard to get things going inside the hospital. Still waiting for the room. It is just not clean yet. Soon she will be moving. The dressing of her incision is removed and she has a beautiful scabbed scar. Each day, more healing with your help...............

The Triplets

2010-11-26T14:14:00.000-08:00

Anna, Ana, Isa
Triplet Double Lung Transplant Recipients

Doing good, loving her friends, such amazing miracles for these three wonderful women.

Hopefully Last Day In ICU

2010-11-26T10:56:00.000-08:00

Day 4 post transplant....

Update, Anna is far more alert today. Yesterday she was really out of it in the afternoon and evening. Today we arrived with her sitting up in her chair and she had eaten some breakfast. She was far more aware but still exhausted. She is suffering from the effects of the super, super high dose of prednisone. It can make patients insane. Anna thought she would be greatly effected by it. She has had numerous hallucinations and seems drunk with kind of slurred speach and dropping things. She says that she is out of it. Taking to the Dr. they believe that this is due to the pred so we are watching her.

I reminded Anna that she told me how the scenario would go, "I will have a rough time in the beginning but once I get over the hump all will go smoothly." She repeated this to me many times while we were in the waiting game. She acknowledged that was right. She did not know the details and did not expect the kidney issues but we will go with her idea that it will all resolve and we will move forward. Keep sending the positive vibes and pee, pee, pee.

The big change today should be that she will move out of ICU. We are waiting for a bed.

TG Evening Post

2010-11-25T18:54:00.000-08:00

The Anna Banana Bunch Of Turkeys

Anna is starting dialysis. They waited as long as they felt possible to see if her kidneys would kick in. So, this will help out her system. Again, they believe she will be fine in a few days and her kidneys will recover. They had a big hit with loss of blood and low blood pressure during the surgery. So, keep up the energy flow........ she still needs it.

We skyped with my family in Aptos. We miss them. Then, we went downstairs for dinner. Yummmmm well, almost yummmmm. I wanted TG dinner in the cafeteria. I told Dr. Sista so last week in clinic. I got my wish. I decided that once was enough. Now we have had Christmas morning, Thanksgiving dinner, Mother's Day and many, many regular days at the great Stanford Hospital in our rotation.

We send gratitude to our donor family..................

Yummmmmmm?

It will feel good to get through this period and on to the fun part of breathing...........

A Thankful Dad

Happy Thanksgiving!!!!!!!!!!!

2010-11-25T11:27:00.000-08:00

An Anna Banana Buncher In The Hospital Too.......

Day 3 post transplant....

OK, so, we are still concerned about Anna's kidneys so think flushing water taking all impurities out of her healthy kidneys......... she will get better, let us help it along with our positive visualizations...............

Saw the ICU Dr. She said she never hears such clear lungs so soon after transplant. The lungs are fantastic. She is on room air, has pink cheeks and now has to work on inflating the new lungs with slow deep breaths every 10 minutes. This is really kind of impossible because to keep to a schedule like that is well, so many interruptions in ICU that you can only do the best you can.

I feel so much better. Some alone time, no talking, resting, sleeping, restoring was all I needed. I am now in Anna Stenzle's room writing this blog post. She has her tummy issues happening. Thanksgiving at the Stanford Inn for her too.

We have been offered TG dinner to be brought to us and we are grateful but need to keep it all so simple. We are actually looking forward to turkey in the cafeteria. We will miss our family who will be together today and all the fabulous food. We are a family of excellent cooks but simple turkey and mash potatoes with this little family of ours here near Anna will be an incredible Thanksgiving for us.

I cry for our donor family who will be having a sad Thanksgiving and I hope that their knowing that they saved lives by their generosity will give them some comfort. Peace to all of you and may you one day understand what a blessing this Thanksgiving is for us. We will never forget the amazing gift our dearest Anna has been given.

Please send healing around the world to everyone who is suffering today. May they know love.

Anna Needs Your Prayers........

2010-11-24T17:16:00.000-08:00

OK Anna Banana Bunchers............ Anna's Dad just told me to rally the troupes. Anna's kidneys need extra support to heal from the onslaught of the surgery. If you can clear your mind and focus on healing energy please send it to Anna and her kidneys. Let us see if we can keep them from having to do dialysis. Lets heal those kidneys with our prayers and thoughts of healing.........

Ready, set, go..........................

A Quiet Day........

2010-11-24T15:36:00.000-08:00

Yummy breakfast for Anna today.......... all finished!

Day 2 post transplant.....

Exhausted today.............. I must retreat to restore. Came home at about 3PM. Feet up on my darling Anna's sofa, glass of wine, TV on.............. Anna is sleeping and resting today so I decided so am I.

Thanks to dear, dear Peggy for being such a good friend bringing us dinner last night and bagels today............ you are wonderful.

We want to be sure people know that we can not accept any flowers or plants. Being immune suppressed means restrictions on such things. If some of you are feeling the need to offer a gift, a card to Anna would be loved, and if you wish to make a donation in Anna's honor........

United Network for Organ Sharing
www.unos.org
Donate Life, California
www.donatelifecalifornia.org
Cystic Fibrosis Research Inc
www.cfri.org
Power of Two Movie
www.thepoweroftwomovie.com

And...... are you signed up to be a donor? why not?

Thanks again for all of your support...............

Update

2010-11-24T10:15:00.000-08:00

Day 2 post transplant.....

Anna had jello, broth, apple juice and ice chips for breakfast. She was very happy to eat. She was also sitting up in a chair. She was very drugged up and needed to sleep so we are letting her rest.

One of her complications is that there is concern about her kidneys. She had very low blood pressure during the surgery so they think that this stressed her kidneys. We have been told that they may get worse before they get better but they do believe they will heal. Her blood values are being looked at closely before making a decision about dialysis. Her strength and the continued progression in her healing makes us confident that she will heal from this too. She will be in ICU for a few more days until she is no longer on certain drugs that need to be monitored there.

More as we learn more............

Waiting for Visiting Hours To Begin

2010-11-24T09:17:00.000-08:00

My Favorite Moment....

Visiting Hours begin at 10AM. Just thought I would post photos from yesterday if you have not already seen them................

Another Milestone

2010-11-23T18:47:00.000-08:00

Another Photo From Camp Anna On The Big Night

Another milestone............... sat up in bed................ then stood on her own two feet 29 hours post transplant................. eating ice chips .................. happy with her progress ...............

Still Improving........

2010-11-23T17:13:00.000-08:00

Camp Anna

Still day 1 post transplant.....

This afternoon Anna has continued to improve. We have spent a lot of time with her. She has expressed her love for all of us and in visiting with the surgeon she called him her hero. When she sees Dr. Weill she smiles and gives a definite thumbs up. She has her definite sense of humor and her deep concern for doing the right thing and being perfect in her recovery. She told us she was ready to go and go home. It is not time yet but she says is ready to walk and kick butt even more. Thanks for all of your prayers, good thoughts and support. We have felt it so much. This is the miracle that I had on order and "soon" means November 22. And as for November 23........... more than one person has expressed that it was on this day that she was reborn as she took her first breath with her new lungs.

As a mother and Doug as a father we have had the unreal opportunity to have a child with a lethal disease that came to the end of that journey and while in the same body has been blessed with a new life and a new journey. Unbelievable! We are so fortunate! We are so looking forward to this new time of living life at its fullest................with Anna!

She Is Breathing................

2010-11-23T12:15:00.000-08:00

At eleven thirty this morning Anna took her first breath with her new lungs.............. tube its out!!!!!!!!!!!!! Sara and I got to be there! She is confused and it is amazing..............

It's Anna Banana For Sure!!!!!!!!!!!!

2010-11-23T10:30:00.000-08:00

Sara and I just went in to see Anna. She is waking up. Not long until they will take out the tube. She was trying to communicate with us. We gave her a pencil again and she start to write a "W" then some other letters.... Sara said, "White????? Are you white?......... then we said, OOHHHH white board! And with that she threw the pencil at me!!!!!!! Anna is back! We forgot that she had a plan for us to have a white board for her........... she looked up at me with a disgusted look of I failed as a mother............. we all laughed so hard...................... Casey will be here soon with the white board. Things are going well.........

Dr Wiell stopped by and is please with how things are going and said that we may be surprised with how fast they get her out of here. Look out world a new Anna Banana with the power to breath will be hitting the streets soon..........

Our Favorite Thing, NEW LUNGS FOR ANNA!

2010-11-23T09:25:00.000-08:00

Day 1 post transplant! Hoooorrraaayyyy!

Talk about exhausted............. Slept at the apartment last night. Doug could not sleep and had to be with Anna all night. So glad he was here so that I could let go into rest. He is now trying to catch up with some sleep. Sara and I are now in the NICU waiting room at our post. Saw Anna and she was trying very hard to communicate. She wanted to write a message to us. So frustrating for her and for us to watch her struggle to tell us something. We had to tell her to be patient. The nurses are fabulous and all is going OK. She has a fever that we are not going to worry about right now. She is oxygenating well and they are planning to take the tube out this afternoon. Then we can begin to communicate. Most important is she did it! It will be rough for the next few days but she will get through this with the incredible care she is receiving.

So what does this feel like? What does it really feel like through the numbing tiredness and layer of worry? It feels like someone on Oprah's Favorite Things Show! I know you may think this silly. And it is, but I saw that show on Friday and Casey taped it for Anna yesterday and we watched it to wind down last night. All I could imagine was......

Oprah on stage saying, "So, do you have CF? Do you cough and cough, do multiple treatments a day, are you tied to an O2 cannula? Well, here is one of my most favorite things!!!!!!! NEW LUNGS!!!!!!!!!!!!!!!!" and then of course the audience goes wild, I mean WILD!!!!!!!!!!!!!!

Said, "You Kicked Butt!!!!!!!!!"

2010-11-22T15:19:00.000-08:00

Just saw Anna in ICU. She is not awake yet. Still waiting to see that she does not have too much bleeding. They will see about waking her up soon and taking tube out in the next couple of hours. Her Dad told her she kicked butt...............

Out Of Surgery!

2010-11-22T13:37:00.000-08:00

Just heard. Anna is doing well. Good new lungs. In about an hour we get to see her if all goes well.
Halllleeeeeuuuuuhhhhaaaa! (or how ever you spell it!) Anna has new lungs. Sing it on the roof tops!!!!!!!!!!!!!!!!!!!!!!!!! Thank you for all your kind support.....................

It Is Happening, New Lungs Have Arrived!

2010-11-22T04:53:00.000-08:00

Day 119 and Anna is receiving new lungs............

Anna was wheeled into the OR at 4:30AM. We got to the hospital at 11:30PM. Anna had her entourage, Ana, Isa, Mom, Dad, Aunt Sue, Sara, Lou, Casey and Linda. The evening went by very fast with story telling, and oh my gosh I can not believe it is really here. Anna entertained us with her humor and strength.

What we know is the donor is a youngish woman with healthy lungs that were a perfect match. From the beginning it was felt that this was a go and good for Anna. Someone's family allowed this donor to offer a new life to Anna and we are sure others as well. Let us take a breath and be grateful to them and know that their Thanksgiving will be different from ours. May their grief be comforted with love and family.

The surgery will take about 6-8 hours. We are camped in the NICU waiting room. I am so glad that my sister is here with us. The signs...........the full moon, a beautiful number 11-22 and my sister arriving today from Oregon with her family for Thanksgiving. I always wanted her to be here when this happened. It is so amazing that she is here. In fact it was such a warm and upbeat evening with everyone who was with us. We are so blessed by these loving people.

I will post as I find things out. Sara is taking over Anna's blog for the next few days...........

The Call Again......

2010-11-21T22:05:00.001-08:00

We are on the way to the hospital...... will post when we know it is a go.......... 10:00PM

Not Inspired

2010-11-18T20:16:00.000-08:00

Oh Flicker on the roof top
remind me to look up!

Day 115...........

It has been difficult to get inspired to write. It feels as though the air has gone out of the balloon. It is a deflated feeling after being so high and optimistic for so long. The dry run had a lasting effect that we all have talked about. This week is about, this is hard.

Anna was at the clinic today. We discussed elements of the dry run with her doctor. Our questions were answered. We were told that it was a good thing that it happened. It means that Anna is right there in position for lungs to come. Sometimes this happens. Next time we will enter the experience with more caution. The transplant can be canceled up to the last moment even while the recipient is on the surgical table. It is not a go until it is. We were also told that our experience that it seems to be taking longer than we expected is not unusual. Because it has been such a slow year, newly listed patients are now being told to be prepared that it may take 6 months to a year before a match is made. There are still the exceptions like our friend Steve for whom it took only two weeks. Even so, Anna was told again that it will be soon. But who knows for sure? And what does soon mean?

I want to be inspired to write something interesting but the truth is at this time I am just plain old tired. I am tired of it all. It is wearing on me, the soul and spirit..........and we move forward with what is true today. That is all we can ask of ourselves right now. The mission of this journal was to chronicle what this experience is like and to be as truthful as I could be so this is it. Not much to say today, life feels flat.

My mother used writing to help her express the unexpressible and found times when the words stopped. She wrote poems about this and about the joy of words appearing on a page......

Oh the gift of words that can pour forth from the depths - That can tell what you cannot say - Beloved words - on a page - A story of your inner thoughts - Words to tell of your wounds - your hope - your changes - your mastery - for all the moments you spend in turmoil and in fear - -Words- Don't leave the source from which you have come - I will find beautiful words to go with the songs I will sing - Beautiful words spin out - Weave pictures of love and hope - And all the moments you wish to come to be your own - Come to a sweetness that is honey to the taste - beauty to the eye - Beloved words - Running, tumbling - From the very reason I am here - Is this all - All I can say to make a rosary of each day.

Elayne....

Moving On

2010-11-15T20:33:00.000-08:00

A photo of Anna 1 1/2 years ago at Stanford Hospital
notice, no O2 cannula

Day 112 awaiting the call for Anna's double lung transplant.....

It is the end of the day on Monday, another week. Next week is Thanksgiving..... can not believe it. The dry run had a bigger impact on all of us than we realized at first. Doug and I were absolutely spent over the weekend. We rested. I stayed in bed Sunday morning until after noon. I have not done that since being a teenager. I almost ordered popcorn to watch TV in bed for the afternoon but the sun was shining and I needed to get out in the beautiful air. After a walk, I slept some more.

Feeling better today. We are picking it up and moving forward. Anna stays strong with her eye on the prize. Who knows when the next call will come or whether it will be another dry run? I think we will all reserve some of our high energy until we get the final go ahead.

Tomorrow is another pulmonary function test and 6 minute walk test to check on Anna's O2 sats. Then, Thursday is another pre-transplant appointment. Again, we never thought she would get to this appointment. We thought lungs would have appeared by now. We were told by the transplant fellow in the hospital on Friday that an offer comes in for Anna about every 4 days but the main issue has been size. They are looking for the perfect match. Again Anna reminded me today that is why she got on the list when she did. She wanted to be strong enough to be able to wait for the perfect lungs for her. If she had been very ill when these last lungs were offered they may have had to take them to save her life. She does not want to be in that situation, ever.

I never liked roller coasters. It is the great heights that scare me the most, or it is the fast speed on a rickety track............ they always scared me and I was never very attracted to them. Friday was like a roller coaster but the amount of emotional energy spent on the ride up and quickly down was far more than I ever anticipated. Now I guess a roller coaster at a park doesn't seem such a big deal after all........ I guess I could survive it just fine. I wonder though, how many transplant dry runs it would take to totally wear me out..........We all have to be very careful to conserve our energy to make it on this journey... It is indeed a wild ride.

These are our trusty liquid O2 friends that are now a part of the furniture in Anna's living room. A lot has changed in the past 1 1/2 years.........
Can not wait until we can rearrange the furniture and get rid of these.........

Dad, Thirteen Years Ago

2010-11-14T15:39:00.000-08:00

Day number 111 still waiting for those perfect lungs.......

Sunday, what a beautiful day today. I am still recovering from the dry run we experienced. Resting, enjoying the couch, a little walk in the vineyard, magazines.........

Yesterday was November 13. That was the day my father died thirteen years ago. Again it is those numbers, 11-13, 13 years ago. I thought about Dad a lot this weekend. For lunch Doug and I had a salad, baguette, cheese and salami. It made me think of Dad. When we lived on Lindenbrook in Woodside the horses lived with us. In the summer, on the weekend, Dad and I would work around the barn, go for a ride and spend some time together. I remember some of those hot summer days when it was lunch time. Dad and I would go to the kitchen and slice up the sour dough with chunks of jack cheese and salami. He loved that lunch.

Bill Dougherty was a very special man and a great father. Dad grew up on a farm in Oklahoma. There were 6 children in all and numerous cousins in the area. Dad told me of when he would go to visit some of his cousins. One household had 12 children. At night time they would take out their bed rolls and sleep where ever they could find an open space. But, he told me that family of 12 all grew up to be doctors, teachers, nurses, all successful and educated. They met huge challenges living in the Depression in the dust bowl. Wow, a different existence.

Two of my father's siblings died of typhoid. Bart and Dolan died very quickly and it was devastating to his mother. Bill was the eldest and survived this scourge. Later Don, Beth and Max were born. Dad went to college and graduated with a teaching credential. It was World War II and even though he had never seen the ocean before, Dad joined the Navy. While stationed in San Francisco Bill met Elayne, it was a fast and deep love. They were married within three months and they both left to be stationed on the east coast until he was sent to the South Pacific.

Bill, Don, Beth and Max Dougherty

Bill was so fortunate to survive the battles in the fight against Japan. He saw a lot of suffering and experienced the horrors of war. These things he never forgot and he became an advocate for peace in the world. Dad was interested in politics with Mom. They were very much against the Vietnam War and we marched as a family in peace marches through Golden Gate Park in San Francisco. Later, Dad was able to spend time as an artist. His sculptures still grace the homes of his children. I have a few pieces that are my special treasures.

It is important to honor these anniversaries where we loose someone. His spirit left because his body was dying of lung cancer. Dad lived a very honorable death. When it was time he slipped away quietly without anyone near. That is the way he would want it. He was a private man and he never wanted to cause us any sorrow, especially his wife. He was in the hospital and that night Mom felt that she had to go back again to see him and tuck him in. When she entered the room he said, "What are you doing here, Elayne? You should be home." She spent a little time with him, kissed him and went home. Just a few hours later without warning he put his head on his arm leaning over the side of the bed on the side table and slipped away. Mom must have known it was time.

I am so grateful to have had such a wonderful dad who loved me so much, and listened to my girlhood demands for a horse. I was obsessed by horses and having one. Dad made sure my dream came true. The years I spent with Missy, and later, my filly Nemara were amazing and a gift from Dad that made such a difference in my life. Here's to you Dad. I miss you, especially your 6'2" warm hugs, wise words, great friendship and loving smile.

As I am writing this our neighborhood is commemorating a neighbor who died shortly after moving here with his family. This lovely neighborhood we now live in met outside to dedicate a plaque in is honor so that no one would forget him. He was a father and husband. His wife and children were there. He left too soon for them.......... so wonderful to live in a caring neighborhood such as this.

She's Got Attitude..........

2010-11-13T06:16:00.000-08:00

Back to waiting, day number 110...........

First, thank you, thank you for the numerous emails and well wishes. One of the hardest parts of this dry run, as they call it, was that we took so many others on the journey of dead end with us. It was a definite UP then down. Well, that is the transplant experience 10% of the time. So now you are in tune with what it is like. Life is happening every moment, and it is intense! Now we can say that we are having the full experience, waiting, dry runs, and next.... the real call.

Must say that Anna has attitude. She had a feeling that this might not pan out to be the real deal. She was hopeful but the way the surgeon talked on the phone at 1 AM left her thinking that this was not sewn up. There were still questions so, she was not too surprised and we all were relieved that imperfect lungs would not be placed in her. So, we resumed our day. I slept, deeply.

Thank you again and again for your willingness to go on this ride with us. And, as for my magic numerology, we will see what I can dream up next!

Yesterday, Stanford Admitting

DRY RUN...................

2010-11-12T09:46:00.000-08:00

We are at Stanford, Anna is dressed in her pretty gown........monitors on......... the lungs are not good enough! False Alarm.............. time to go home.......... we are grateful they do not take anything but great lungs for her............. we will wait again.......... thanks for all the good wishes.

Our life is pure............ drama..............

THE CALL

2010-11-12T01:55:00.000-08:00

Today is the 109th day since we began waiting..........

1AM the phone rang. Doug answered, Anna got the call. The surgeon said for her to be at the hospital at 8AM. I am numb. It is shocking. Here it is. It is now 1:57AM. We can not sleep. How do you sleep? Peppermint tea is comforting, Roxy just brought me a dog toy......life is normal, but now we have THE CALL!

I must say though, there is still a chance for this to be a false alarm. The surgeon said that they still had to make some more tests on the lungs to be perfectly sure. If it is a go the surgery will be in the afternoon. The other amazing thing is the donor is at Stanford Hospital. This is absolutely the best for Anna if it is the right lungs. That means less time for the lungs to be out of the body. It is so much better this way for her.

What happened? Anna was fed up this week, she was done waiting. It was getting hard. We went for a walk yesterday but it wore her out so much. She had to stop and rest on a fire hydrant. This seemed so normal to me. How can it be that it is normal for my young woman daughter to need to stop after a block of walking while on O2........... this is not normal. This is a young woman with very sick lungs who has the courage of a lion, the greatest determination and strong will you will ever meet, and who is going to kick butt in this surgery and recovery. Look out world......... here comes Anna................ (we hope, keep your fingers crossed) I will post as soon as I can if the surgery is a go...............

P.S. the numerology of this............. remember we were so focused on October 23? Yesterday Isa said she had a feeling it would be on November 23......... there is was again, the 23! Well, today is 11-12 and 11+12=23! It never fails........... just got to wait for it to show you how!

Waiting

2010-11-10T15:46:00.000-08:00

Day 107 awaiting the call for Anna's double lung transplant......

What is waiting?

Wanting: In order to feel as though you are waiting you must be wanting something, either time to pass or something to come your way. There is definitely a wanting when you are waiting for transplant.

Accepting: When you are waiting for something that you have no control over you must be able to accept or you will go crazy.

Introspection: The process of waiting can be interesting. It is an opportunity to look at your mind and see how you react to not having any control over getting what you want.

Trial: Waiting and waiting and waiting for something that you want that is critical to being able to live your life eventually becomes a difficult trial.

Insecurity: Having no control and realizing that your mind's games grasping for ways to make it happen can make you feel very insecure. Hopefully the insecurity is let go of and faith in the process takes over.

Nurturing: The best way to pass the time of waiting is to nurture the positive.

Growing: As with all of life's experiences waiting is a fertile field for personal growth.

Yes, we are in waiting. And yes, we believe that Anna is the best prepared most ready to go pre-transplant recipient you will ever find. Every box is checked, all immunizations are done, infection under control, belly healthy, weight stable, attitude fantastic, support system intact, bags packed, multi-faithed blessings received, average wait time passed, car gassed up..... hey universe what more can you want? Oh, I hear you, you want us to wait more. Guess we have more growing to do.

And even more important, our donor's destiny........... in it's own time......... may there be peace, love and acceptance. May the hurt ones be consoled, may the hearts be comforted .........may the grace of generosity help to heal the broken............ together we will be looking for rainbows in the sky..........

Virginia, Faith, And A Cookbook............

2010-11-09T04:36:00.000-08:00

Day 106! awaiting the call for Anna's double lung transplant.......

I guess we are in need of distractions. The feeling that this waiting is getting long is definitely a shared one. So, today we went on an adventure of sorts.

Over the weekend Anna and Casey straightened up the garage. While there Anna noticed some books that she had received as gifts from a dear friend of mine. Virginia was a member of my long time woman's group. She was the elder member whose time came a few years ago when she had to let go of many possessions, sell her home and move into a senior living apartment. In the process many friends received books, kitchen items, garden pots, and unusual treasures as keepsakes from Virginia.

I offered a lot of time to Virginia to help her prepare her home for sale, move and be a caregiver of sorts. She was a strong minded, independent, well read, liberal thinking, nature loving fabulous woman who also loved the teachings of the Buddha. In many ways she was a character who was a role model of how to get old with honesty, generosity and courage. Like my mother, her arthritis limited her and robbed her of much of her independence. But even so, she was a whipper snapper and kept everyone on their toes.

While cleaning out Virginia's things she said to me one day, "go into the garage and get that thing, that pitcher, in a brown paper bag. That is for you." I walked into her charming unattached barn like garage and found a bag with the top rolled over to seal in its contents. Inside was an old pitcher blackened with tarnish. Virginia had bought this at the San Jose flea market years before. She was a collector with an eye for quality and value. This was a lot like my mother. The black silver pitcher was a Tiffany no less. She bought it for only a few dollars knowing it was some kind of treasure and she wanted me to have it for helping her. As it turned out after cleaning it up and researching on the internet I discovered it was worth a few thousands of dollars. Wow, how fun and how generous of her.

I love Antique Roadshow! For a few years I never missed an episode. The idea of people finding antique treasures at garage sales, in attics and just around the house was so intriguing to me. I loved to hear the stories that went along with appraised items. After a huge cleaning out of Virginia's house and garage those of us in the woman's group chose items as keepsakes. What was left sat on the front porch to be boxed up and sent to the Goodwill. As I did so I noticed a ceramic pot with a mark on the bottom that seemed old and because of my interest in antiques decided to take it home. The next evening, Antiques Roadshow was on. I remember sitting on my comfy sofa ready to take in the stories. Near me sat that little blue pot with pink flowers ringing the top. It wasn't a beauty of a piece but intriguing. I decided to look up the makers mark on the bottom while I watched the show. When I discovered the identity of the mark my heart started to beat a little faster, could it be? Could it be that I have a find? That little 5 inch pot was made by an artist, Sadie Irvine from Newcomb Pottery of New Orleans and worth at least $2,000! Woooo Hoooooo! Antique Roadshow was still on the TV and I was having an AR moment in my own living room!

I took the little pot to Virginia the next day. I asked her if she knew anything about it. Her response was, "I just kept posies in it." When I told her of its value she shrugged with a little aloofness that was her signature and reassured me that I had found it and it was now mine. Oh, Virginia, you were so fun. I miss your friendship.

So, to get back to Anna finding a book in her garage that came from Virginia. It was a copy of the Julia Child's Mastering the Art of French Cooking sealed in plastic. It looked old and perhaps original, or could it be first edition? Because of my earlier experiences with finding treasures from Virginia and knowing that she was also a book collector and had an eye for finds, this book was highly suspect to be valuable. When I arrived at Anna's yesterday she told me of the book. After treatment and as we were getting ready for the day, the idea that this book might be a hidden small fortune grew into an obsession. Because the book was encased in plastic wrapping and we were afraid to open it and then lessen it's value we were only able to guess about its identity. We did as much internet research as we could before deciding the only thing to do was get it to a rare book dealer to find out more. The big question was, do we dare remove the plastic wrapping? It was going to be the only way to find out if it was indeed an August, 1961 first edition.

We called Bells Books and were told that Faith, the one who would know about this book would return to the store after 3. We were there, book in hand to find Faith......... so funny, we had to chuckle as finding faith is what we have been seeking during this whole transplant experience. Well, Faith was there but we could not see her as someone else was taking up her time. We were asked to come back. So close, yet so far away as they say. We drove home musing over the question, to open or not to open. Since we found books of first editions on the internet without the original plastic to be worth $1,000 we decided even if it did reduce the value it would be OK and anyway with out seeing the inner story of published dates it was not worth anything any way. As we drove into Anna's driveway it was decided, we will open it!

The whole day had been filled with the excitement of a potential treasure and that feeling of magic that we have had from time to time on this adventure. It was fun, exciting and very distracting. Now, Anna had the honors to slit open the top of the plastic and gently roll down the plastic cover. It was revealed, there in her kitchen, Mastering the Art of French Cooking by Julia Child, et al was............................ a first edition, but a later printing, it was printed in 1968, not what we hoped it would be, the first printing in August, 1961 so, it may not really be worth anything more than being a great cookbook. Research into value will continue...........

The high energy day was brought back to earth. Darn! Virgina, I thought we found another extra special treasure. Oh well. It was fun while it lasted. Anna and I were so glad we opened it by ourselves without an audience. It would have been a bit embarrassing with all the story line that we were attaching to this simple book to have shared that moment with a rare book dealer........... so in a way, we are glad we could not find the Faith........ but only for this time. Hopefully the faith and the hope that we really need can always be found and not too busy for us.............

The Fire Was Circled By Friends

2010-11-07T10:35:00.000-08:00

A gentle rain is falling, kissing the trees and wetting the ground. It is a comforting sound with a rhythm and beat persistent with purpose. The earth is receiving a drink as it enters the autumn time. Golden leaves on the table, the fence railing, the steps and the walkway herald the season. I love this time of year.

We snuck away again. It is a bit scary to be a few more hours away but we took the chance to be in Murphys. My innerds are filling again with the life here. The afternoon was spent at The Barn painting with 10 other lovely ladies. In the evening we sat around a fire after devouring handmade pizzas cooked in an outside oven. More delicious than I imagined were these individualized flavors baked by a wood fire with a crispy and tasty crust. Pesto, goat chesse, seasoned chicken, kalamata olives, tomatoes, pears, apples, onions and more were the ingredients to build a masterpiece of tastiness. Yummmmmmmmm. Then the fire was circled by friends who howled at the sky, beat sticks like drums, and told stories that revealed tell tale characteristics of their souls. What could be a better time?

It is a short visit but at least we were able to touch in. This is where our tribe resides. We will resume the communing when our task is complete. Anna's lungs have first priority. Perhaps the universe heard our beats and songs into the night that called the spirits to be with us. Perhaps we stirred the pot with our energy of friendship and story telling to awaken the karma that awaits Anna. And, perhaps not. Again, we must let go to this flow, what ever direction it is to take.

It is November, enjoy this time, enjoy the gentle rain, tomorrow resume the sweet time of caring for my darling daughter, follow the path that has been given me. I am grateful for it all. I have so much. Such, great fortune, really it is...........

Home Again

2010-11-05T15:24:00.000-07:00

Day 102 awaiting for the call for Anna's double lung transplant...

Hospital stay was less than 24 hours, a record and a relief. Feeling punky still, tired too. Time to enjoy November. Can not believe it is November already. Wait, I better believe it and enjoy it too. Autumn is my favorite time. It is especially beautiful in Livermore in the vineyard...

In The Hospital.............

2010-11-04T00:24:00.000-07:00

Day 101................

Today, I mean yesterday was a different day than we expected. We were to go get our shots to cover for whooping cough, pertussis, because of the epidemic in the bay area. If you have not thought about this, it is a good idea to see if you need to be re-immunized. Our whole family will get them along with our flu shots. But, we never got there, instead now I am here, sitting next to Anna in her hospital room. Not much sleep for us tonight.

CF gut raised its ugly head today without warning. Anna had tremendous abdominal pain all afternoon. After driving to Stanford for an Xray and then driving back home we were told to return and enter through the ER to be admitted. When this type of blockage happens you have to be aggressive or these CFers can get into big tummy trouble. So, the amazing thing is that the dreaded ER turned out to be no problem. It must have been some kind of record. We left Anna's house at 8PM, got into a room in the ER and by 10PM Anna was admitted into a room on a floor in the hospital. We planned that we would be spending most of the night in the ER so to be able to go to a private room so quickly was fantastic. While we were in the ER they kept saying that we must have some friends in the hospital to make that happen so fast. It never happens like that. We will take it, a little magic in the ER is great. So tonight I have a cot, helping Anna through this tough blockage. Things are already getting better........... hopefully she is not be here too long.

Did you know that Oprah is on at 1AM? Now I do.......

A Canoe Ride On A Sunday Morning

2010-10-31T07:15:00.000-07:00

I have been trying to observe this experience closely. I am watching the thoughts and stories cross my mind about waiting. Sometimes people might say, well, if you just stop thinking about it, then it will happen. Do you really think so? and.... Do you really think that it is possible to not think about this all of the time?

There have been times when I "forgot" about it. Like in the movies when we were absorbed into the story, like when I day dream about "other things". And guess what? Yep, during those times, even though I did not think about it, Anna did not get her call. Makes me think, this has nothing to do with what ever we think or do. It is all about going for the ride. Part of the ride is the anxiety and wishing for it to end. Observe that. This mirror of the mind shows us how we think and process this type of situation.

We have seen ourselves watching our mind streams. It is funny some times how we have moments when we can not stand it any more and moments when it is OK. We have seen times when we have noticed emotions, joy and sadness, triumph and frustration. We have also watched ourselves entertain our minds with humor and the creation of funny connections and signs to fill the air with something to do to pass the time with a positive flair. It is all our minds and our thoughts. Meanwhile the world goes round and the intricate web that connects Anna with her donor can not be seen by us but is it influenced by our willingness? That is a big question.

When you stop to observe this mind stuff it does give you a moment to reflect on the awe inspiring process of it all. When you look at the stream of thoughts floating by you realize that is what they are, just a part of the stream, part of the river. So, we have a choice. We can flow or get entangled with the thoughts that flow along with us whether we want them there or not.

Connected to this are the wonderings about two friends of Anna's on the list. Last week Steve received his lungs with only two weeks of waiting. Hardly a flow on the river from our definition, but it was his flow. He had his transplant when it was karmically the right time for him and his donor. Then there is another friend of Anna's who has been on the list for 8 months. She had one dry run but no viable lungs for her. Last week at her clinic visit it turns out that her lungs have improved so much that she is taking a leave from the list. So interesting. It just has not been her time. Each person has their own story held with a mysterious wrapping. Both of these cases have given Anna more confidence that the process works and has its own justice. It is part of the unseen order that is in nature. It unfolds as it should. There is always spring, summer, fall and winter. There is a pattern, there is a web that we are a part of, collectively and individually. This is what makes life so interesting, intriguing, scary at times, and wonderous. This is what faith is, believing in the flow.......

So, new visualization, I am in a canoe, the water is flowing, the scenery is beautiful, autumn colors splash in the trees, a soft light fills the sky, all is well, we are just a tiny part of this amazing journey through our universe. Peace to my universe. Peace to your universe.

Calm The Mind, Delight The Heart

2010-10-29T07:09:00.001-07:00

His Holiness the 14th Dalai Lama
Visits Ronald McDonald House, Stanford
10-13-10

May the peace from these blessings fill hearts and remove all obstacles.
For the benefit of all beings.

A Jewish Blessing

2010-10-27T21:12:00.000-07:00

Day 93 or exactly 3 months on the list..........

Today Anna had a CF clinic appointment. The last one was 6 weeks ago. We really did not think she would be going to this one but there we were. Nothing has changed. All her numbers have stayed stable. She is doing great and they are proud of her. We asked Dr. Dhillon (a CF physician and a lung transplant physician rolled into one) if there had been activity around Anna's name. He said that she has been discussed for lungs recently, he did not say how many times but it certainly seemed more than once. The main issue that he said was of concern with the lung offerings was the size. There has not been a perfect match yet. He said that when a patient is being discussed regularly it means that it will be soon. Now there is that word again, soon, such a relative term. Even so he was encouraging. Anna is getting excited. Since her friend Steve got his lungs yesterday she has gotten very excited and more ready than ever. Ready to get on with the show.

Because we have had some very special spiritual experiences during this journey Anna's interest in the experience of healing blessings and prayers has been peeked. One type of blessing that she felt that she wanted prior to the transplant was a Jewish Blessing. She has a lovely prayer quilt from her friend Courtney's prayer group, a special and personal blessing from the Dalai Lama, all of the prayers from everyone out there offering up to their God or spirit energy for Anna but because of her heritage Anna really also wanted a personal Jewish blessing.

When she first requested this I immediately thought of my friend, Chaplain Bruce Feldstein at Stanford. Bruce is a medical doctor turned Jewish Chaplain who I served with 10 years ago at Stanford. He is a wonderful and very healing man. Well of course as our days go, right after the clinic visit as we walked down the hall there was Bruce! I had not seen him for a year. We told him of Anna's desire and he took us to a quiet waiting room and sung the most beautiful Jewish blessing prayer for Anna. He invoked the archangels to give her loving kindness, strength, light and healing for this journey. Bruce also prayed for the transplant in a way that honored the unfolding of life's events and the gratitude that will come through intersecting with someone's life who has the compassion to donate organs to some one who needs them to live. It was sweet and beautiful and a completion in a sense. Ask and it shall be given. As a blessings collector, Anna has collected a wonderful bunch.

So many blessings, so much good energy. We can feel it all and are just excited. We are letting it flow and letting it go.............

P.S. transplant number 6 for October at Stanford is being performed at this moment. Amazing, 6! We are on a roll........ Anna would love to be 7. We shall see............

A Shared Journey

2010-10-26T20:51:00.000-07:00

Day 92 going with the flow and awaiting the perfect match for Anna......

Tonight I drove to Stanford Hospital to say hello to friends whose dearest Steve was in surgery for a lung transplant. We have known this family many years, 20 + years. We were all involved in CFRI and Anna met Steve and Stephanie through CF Camp.

It was one month ago when Anna had her last pretransplant clinic appointment that we saw them. Steve who has CF was being evaluated for a transplant. Seeing him concerned and worried us. It just shows that you never know about these things. Steve has been on the list for only two weeks and his perfect match was made yesterday. As I am writing this blog he is in the final stages of his surgery. Last night it was thought his surgery would be at 2AM but it was pushed off to 2:30PM today. He is the 5th lung transplant recipient this month. Who would have ever thought that he would be transplanted before Anna? But, we are thrilled and relieved for him.

It was wonderful to sit in the waiting room with his mom, Barbara, wife, Stephanie and his best friend and sister. How exciting to think of a new life. He is 41 and he and his wife have a 3 month old baby. He now will have the energy to be a dad and live to see his child grow. So amazing, no more crappy lungs.

We dreamt about the next Transplant Olympics. In healthier days Steve was a swimmer as Anna was. I recruited Anna into this without her there (sorry Anna, an overly aggressive Mom) but we thought we would go together and watch them swim and maybe Ana and Isa and Anna and Steve could form a relay team to compete together. These ideas make you giddy. There is so much hope and possibility in the transplant arena. Yes, there are still dangers and complications and a bunch of yucky stuff our dear and courageous loved ones must endure but the good stuff is so close we can all taste it.

Sharing the journey is very special. We are rooting for them. Go Steve........... and we will continue to let it flow and let it go...........

Be Like A Dog

2010-10-25T20:15:00.000-07:00

Day 91 or 13 weeks awaiting the call for Anna's double lung transplant....

So October 23 has come and gone. Our great math magic for predicting transplants seems to have failed. Oh Hummmmmmm. It is back to living in the moment and each day as it comes. Makes you wish you were a dog. There are a number of dogs in Anna Banana's Bunch and Roxy is one of them. You know life as a dog has great advantages. Roxy does not have a clue that we are waiting. She is waiting with us but you know she does not care. All she cares about is wagging her tail, kissing our faces and going for a walk, with a few treats thrown in between. Life as a dog is lived being present, not preoccupied with concern or worry. So it is time to live more like my friend Roxy.

Actually we now have no more future predictions to test out. That is a relief. We will now move forward with our tongue in our cheek our sense of humor attached some where in our minds and our tail wagging while we seek out signs, signs every where signs. Just for fun of course.

And here is an update on the goat yogurt, not sure at this point if it is a sign. I have now consumed 21 containers in this apartment. More has been eaten other places but what goes on here is what is of importance as I gather the vital statistics of this waiting period after 13 weeks have now passed.

And, special thanks to all of Anna's Banana Bunchers. The photos are wonderful as a collage. It makes Anna so happy. So cool to see so many friends and family being so supportive.

So, that is the update for now. All is well and we are waiting. Oh, by the way, there have been 3 lung transplants at Stanford this month with two more happening tonight as I write. Sara is on her way now to get a consent form signed so the old lungs can be researched in the CF Lab. Amazing, all you have to do is be like a dog, be patient, live in the now and lung transplants happen. 5 for this month is a lot. Maybe Anna's will be soon. It requires a match, the perfect match at the perfect time. The truth is no one knows when that will be. It is a cosmic secret never to be revealed until it is time. We will wait. It will happen. There have been enough signs to know that much at least............

Grandma Cody

2010-10-22T06:04:00.000-07:00

Day 88....

Tomorrow is October 23. Anna and I have joked about that day as perhaps, "the day" for the call. We need to find the silly and ridiculous in our situation to be light and to pass the days of waiting. Sometimes it all is quite silly. But, I want to share another thing about what tomorrow really is. It would have been my grandmother Cody's 113th birthday. Yes, kidding aside, it is significant that it is her 113th as those numbers do seem to be a recurring part of our serendipitous experience, but also that she was part of our female lineage and an interesting and courageous woman.

Last weekend while I was home in Livermore I decided to help Doug organize more of the garage. We moved here last December 30 and there is still some unpacking and organizing to do. Shortly after we moved in Anna continued her decline, the weather was terrible, the yard needed to be landscaped and we needed to feel settled in so some things have been left undone. While going through boxes on a shelf in the garage, that is to be my art studio one day, I found somethings I did not realize that I had. It may have been that Greg, my brother, had this box with albums from our dad and mom and left it with me, but I am not sure. I had not gone through it. I thought I had already seen all of the photos that they left behind. As I leafed through the photos and pages I found a couple of things that I had been looking for. One was the date of my grandmother's birth. In my father's handwriting on a genealogy form it was written as Oct. 23, 1897. I knew she always lied about her age as she was very concerned about becoming old. Now I realized it would have been her 113th birthday this weekend. The second was an address. Mom saved three letters of correspondence with a cousin's wife in Chicago. I thought I lost all threads of connection with that side of the family. I was thrilled to find a way to contact some member of her family of origin.

I also found some old photos of mom and her mother and father that I may have seen years ago, but I am not sure. Upon finding the letters I went straight to my computer to see if I could also find a phone number. I called the lost cousin and left a message. The next day she returned my call. It was very special, really, to find this lost piece of my mother. She left behind poems and writings about her early life in Chicago and San Francisco that gave me the understandings I had been looking for for such a long time as to why she had such a difficult childhood. Right after her death in 2009 I did some research in old Chicago Tribune newspapers and discovered a lot of information that filled in between the lines. With this information I spent hours and hours reconstructing her early life story and writing a 65 page volume. I shared some of the details with my new found cousin and she shared the perspective that came from her family's side of the story.

What I was told was familiar to me. It is what I remember mom telling me, Cody was never really accepted by her husband's family. She was also blamed for the breakup of her marriage. From the perspective of my grandfather's familiy she took the children away to San Francisco selfishly. From what I understand there was another reason. As I talked with this cousin on the phone I realized that an unflattering judgment about my grandmother that was formed seventy years ago was still alive and part of the family lore. It needed to be enlightened and corrected. What was so interesting about this was that I realized that never at any time was there anyone who could stand up for Cody as a witness to all that she endured, defending and supporting her. She had to do this all on her own. The strength of my grandmother and the courage it took to face her challenges at the time of the Great Depression is very inspiring.

I sent the story as seen from my mother's eyes and from my interpretation to the Chicago cousin. I hope that she is reading it and understanding that shiksa that married Frank in 1919 during the time of the roaring twenties when life was fun and glamorous. My mother was born in 1923 during a time of great affluence. She was loved by both her mother and father and lived a rich life in a vibrant Jewish family with a protestant mother. That spelled trouble from the beginning. When the Depression hit. the family fortune was lost. The power of the money that created the bond between my grandparents was gone. Years of poverty and instability, moving from place to place wore out any semblance of togetherness until there was nothing left between Cody and Frank. Cody was asked to raise her two children in a terrible tenement house in the south side of Chicago. It was humiliating and terrible. Finally when my mother was the age of 14 my grandmother took her two children and moved back to San Francisco for good near her sister and parents. She did not take them away because she was a selfish woman, she took them because she was a hurt and broken woman who wanted a better life for her and her children. My grandfather was also a broken man who never could reconstruct a stable and honest life for himself and his family.

So, tomorrow it would have been Cody's 113th birthday. Mom would have remembered her mom and sometimes on October 23 she would go to the cemetery to honor her. Now that mom is not here I will remember my grandmother. Now, perhaps since I was able to tell her side of the story to a member of the family who had only known another side, she will now see my grandmother in a new light and there will be some healing and some vindication for her. How wonderful to think of that, to think that the telling of the story after all of these years could create some healing about the memory of my grandmother's life. What a gift that is to me. So, October 23, 2010 is a very special birthday. "Grandma, I told them. Carol heard me."

this is something that my mother left behind that she wrote about her mother during their trying times......

"Anyone who suffered my mother took into her heart. I remember two very classic examples of her care for others, first during the Depression and we were living in Chicago at the time in a very large old apartment hotel. It was extremely ugly and had its share of cockroaches and rats, in fact it was a slum, even though it did not seem that way to me. Any way, my story, old people who had very little to eat used to roam through the halls and knock on the doors for food - one very old shabby lady used to come to our door - her name was Bessie Wobedo (that is what I remember her name to be.) She was so unkempt and I remember drooled from the side of her mouth and had stringy white hair and wore a frayed and unclean black coat. Mother would invite her in and share food that we had with her. Mother sensed that I was quite uncomfortable entertaining this lady and she would tell me how sorry we should be for poor old people and she would always welcome Bessie, as though she were always glad to see her. I hope that now I could do the same as well, but back then it was very hard for me to understand her compassion for others. She gave of her time to many others in this apartment building at this time but her heart was very distressed because we had to live there and she so wanted us to have a better life."

Cody in the 1950'5

Coral Lucille Thomas, "Cody" (named after Buffalo Bill who bounced her on his knee) was born in Butte, Montana, October 23, 1987 and was my grandmother, Anna and Sara's great grandmother. Happy 113th birthday, you are in my heart and my memory.

It Must Be A Sign!

2010-10-20T22:19:00.000-07:00

His Holiness making an appearance.

Amazing what you can cook up with just cheese and bread.......

Day 86, awaiting the call for Anna's double lung transplant while swimming in signs.......

Today's discussions centered around signs. Anna and I are getting so good at recognizing signs that we think we may have a new profession. We can be sign finders and sign creators. If you are having a hard time, are a little weary, just want to get on with the show, or just want to be in the know then call us, The Holy Cannoli Sign Professionals! We are expensive, we charge by the hour, but we are good at it.

At dinner time tonight we worked on perfecting the famous sign, the Holy Cheesus but a Buddhist version. Pretty good likeness, hey? His Holiness's appearance on Anna's grilled cheese is most definitely a sign, a sign that we know our signs. (and yes we watch Glee.)

We found so many signs today for why this weekend the transplant just might happen. I can list them:
• the date, the 23rd is definitely a sign,
instead of 13 which is Anna's birthday, 23 would signify her 2nd birthday....
23 is equal to 13 + 10 or Anna's birthday plus Casey's birthday......
2+3 equals 5 or, it has been 5 months out of the hospital
Anna's grandmother was born in 1923
Most significantly, 10-23 would have been Anna's great grandmother's 113th birthday if she was still alive. Remember the significance of that 13!
When we were in the book store, the cards with sayings about each day of the month was missing the 23! The absence of the 23 must have been a sign!

There are more signs every where!
• It is also a full moon this weekend...
• It is going to rain so there will be rainbows, definite signs of special events.........
• All of the CF staff is gone at the CFF conference, no one is around so of course that is a sign too.
• Sara is off duty from attending transplants for her job this weekend so is available and the best weekend for her, very much a sign......
• Ana, Isa, and Linda are here, a necessary sign........
• and there is a special sign that is secret, we can not tell............

You see, we are masters at sign finding and creating. Don't you want us to help you with your signs? Everyone has them, you just have to become more aware of them or hire professionals like us.

Are we in loopy land today? You bet cha.........

Another Day on the List

2010-10-18T21:13:00.000-07:00

His Holiness The 14th Dalai Lama Blessing Children
Ronald McDonald House, Stanford
10-13-10

Day 84.....

I got a sneak peek with one photo released to me of our incredible day last week. Now I hear that the rest of the photos will not be released until Nov. 1. I know not why but we will wait. Until then here is a little window into our incredible fortune last Wednesday when we got to witness and be a part of this wonderful event.

With a week like we had we are not allowed to say we are bored for another 20 years or so. To be fair, life just has not been boring on the transplant list. We marvel at how our life events have unfolded. In a few days we went from meeting one of the most famous and sought after teachers in the world to, for the first time, seeing ourselves in a movie that will be on the silver screen in a theater near you some time next year. A little too much excitement for a sick young woman having a hard time breathing and her momma sitting on the edge of life, waiting for a lung transplant.

And now, because of all of this we know that we want to put any available energy that we may have toward promoting and supporting the Power of Two film. That is the project that we must adopt. If there is any way we can help with the fund raising and raising awareness about organ donation we want to participate in that. It is the cause of the moment. It is vital to our lives and we know to many others and in fact, could be to anyone anywhere around the world. It is a universal cause filled with the magic of medical miracles, the ending of suffering and the need for compassion and comfort.

Is It Real Life Or Is It A Movie?

2010-10-17T15:20:00.000-07:00

Years Ago
The Modlin family with Isa Stenzel and Ana Stenzel behind the camera.....

Day 83........

Yesterday we went to the first cut showing and fund raiser for The Power of Two movie. It was held at the new VIZ theater in Japantown in San Francisco. How exciting! I must say that we all were not completely prepared for how integrally Anna and our family were portrayed in the film. It was a bit overwhelming and took a while to digest. We were watching our life on the big screen in a movie theater! So strange.

Over all we were so impressed with the beautiful and professional quality of the film. It will be a feature film poised for film festivals, the TV and perhaps an Oscar? It is not yet completed. They have another month of editing to do so it is going to be so amazing when it is done. As Anna says, it is going to kick bootay!

Ana and Isa are so engaging, articulate and fun to watch. Their message is poignant and universal. They were courageous children and teens who met their challenges battling CF with creativity and determination. Their lives as adults have shown them able to beat the odds with miraculous events occuring in their lives. It is very inspiring to hear their story, in and of itself. The movie also discusses the international need for organ donation and the power of transplantation. It is riveting and emotionally engaging.

Anna Modlin plays herself. She is fully transparent with what it is like to live with this disease choking her and stealing her breath. It shows CF out of the closet. I am so proud of her willingness to share her life pre-transplant with the world. It will help people to understand CF, lung disease and the experience of waiting for transplant. I play myself too. I am the mother by her side who won't give up. We are fighting for her life together. The movie focuses on our role together as another power of two, but, everyone is really involved in this struggle. Doug, Sara and Casey are also equal partners in this too. You will not see them on the screen in the film but we are all playing necessary parts at this time and always have as we meet the challenges of CF.

The feedback was tremendous. I did not quite know how to let this all in. It is a bit daunting to see yourself on the screen for the first time while in the company of so many. But, this is about the issue, not me. This is about what it takes to participate in the miracle of transplant. It is a test of the metal. So, once again, I dedicate all of this to the mothers, fathers, sisters, brothers, friends and lovers who are by the side of someone they love fighting for life and hoping for a miracle. Anna represents the patient on the list, all of the patients on the list. May a miracle come for all of them.

If you want to be a part of this there are two things that you can do. One, my friend, Wendy, just emailed me to tell me she finally registered officially as an organ donor. You can do this too, easily as you sit there reading this. Go to Donate Life (click) and find out how in your area. Now that you have stopped putting that off, talk with your family and friends. Discuss the hard parts of "if I should die". We all will, you know. Some of us will be able to leave this life with the lucky opportunity to offer life to others upon our passing. This was even true for my 85 year old mother whose skin was donated to burn victims upon her death. This is more likely to happen if you sign up as a donor and make your wishes known to your loved ones. Encourage the important people in your life to do the same.

The other thing you can do is make a donation while you are still here! The Power of Two movie is in need of more financial support to complete the film They still need about $300,000. If everyone chips in a bit it will make a huge difference. Or if you or someone you know wants to make a major contribution to ensuring the distribution of this powerful film then please do. All donations are tax deductible. Go to The Power of Two Movie (click) and then click on the donate button.

Thank you, Thank you, Thank you.................

Hearing the Song of the Ancients

2010-10-14T23:57:00.001-07:00

Day 80.....

Today we rested and integrated. Our visit with His Holiness was so powerful, the afterglow stayed with us all day. It was as if we were still with a foot in another universe. Many times we said to each other, "did that happen?" Yes, it did it was real and so very special. The day's conversations included philosophical discourse and trying to share what it all meant.

Most of all I think one of the greatest teachings was how everything is interconnected and how the movement of our lives toward a transition can be seen all around us. The other thing I told Anna that is very, very important is even though we are in this critical time with her health on the edge there is still this magic. As His Holiness said, it is sad when there is illness but there are so many facets to look at in one's life and find what to be grateful for and what is truly beautiful. This experience is a bit of everything. We experience danger, fear, hope, magic, sadness, laughter, love, friendship, loss, pain, confusion and clarity of thought.

When you have serious illness threatening your life you are challenged. When you are the mother of a child turned adult who has fought disease all her life with you always at her side you are challenged. When the edge of the precipice is dangerously under your feet and the time comes after so many years of sickness and care giving and you are so very tired of it all, you begin to hear the ancients in your bones. They begin to sing to you and beckon you to listen deeper and deeper. The ancients know how you feel. They are the ones who through all the ages of time have fought illness and loved and cared and made beds and cooked soup and held hands.

My experience meeting the Dalai Lama yesterday helped me to hear these ancients and the "mothers of all time" more clearly. Being in his presence and touching his hand, I heard them sing to me through my bones. It is a song of longing and a song of sorrow with a sweetness that lulls you into a peaceful acceptance of what is. The song wraps you in wise threads that strum a familiar human melody about a path of understanding. All you need is to listen.

Touching His Holiness

It is the ancient place where the earth beckons us
It overflows with an ancient ooze
It is the light
It is the heat from the center
It is the ancient place of the mothers of all time
Lift the boulder that hides the way
Lighten the boulder that resides in me
Lift the burden in my bones
Release this tight hold I have on the edge of the precipice, fearing our slip
Let us drop, let me feel the release
No fear, there is nothing to hold on to
Let me travel deep into this core where the spirit heart is beating, never stopping
The drum beat of the earth mother sounding her cry
Where the song of the ancients is humming
Melt away, melt away this burden
Incinerate all vestiges of restraint, all chains that bind me to a place of unbecoming
Let me burst forth with a newness that knows this song of the ancients
And the mothers of all time
Deep in my bones
Reaching your hand to me, reaching my hand to you
All benefits must forever benefit all