Thanks For Karyn

A Day Like Today

2007-07-16T02:07:00.000-07:00

One year ago, on a day like very much like today, this large empty room was a much different place. Many candles burned where now there is only one. The sounds of Bob Marley filled the room as they do tonight. I was alone with Karyn, just the two of us, as we were in the beginning. In a time when we were simply together, in love, happy and free with nothing but the great mystery of life ahead of us. Sadly though, unlike those long gone times, this would be her final day. The body that had carried her to so many places, guided her through so many stages and had created two new lives was growing tired of fighting an unbeatable disease. It was on this day, July 16, 2006 that her body would make its final earthly gesture. The breath she took at 2:34PM became her last and so ended Karyn's life as we knew it.

When I first met Karyn I was completely overwhelmed by her presence. Her beauty was beyond words and she exuded an energy that I had never encountered before. These distant times are like a wonderful dream you fight to remember in the early hours of the morning. They were innocent and pure and will forever be among the greatest moments of my life. Our connection was greater than the sum of the parts, our friendship unlike any I've experienced and her influence strong enough to continue to this day. We created two amazing human beings together and our lives became dedicated to their lives. I can count on one hand the times we were apart. I can count on two fingers the times that we fought (bickering not included). I don't need fingers to count the times we raised our voices at each other because that never happened. We created our own relevance here and, in the spirit of that great American dream, we hand-crafted careers that were woven into our lives. Our destinies were proudly in the palm of our hands until that fateful 26th day of January in 2006 when we learned that control would be relinquished to fate.

A little over a year after watching my dear friend, mentor, hero and father lose his brief battle with cancer at 62 I was back watching it all over again... this time it was Karyn. Of course, I wasn't alone. We all watched in horror as one surgery led to more and one complication begat another. Seeking hope between every line of every horrific bit of information we were given, we pressed on. Soldiers on an impossible battlefield, life contained no respite. When you fight the fight of your life, all rules and restrictions are thrown by the wayside and survival takes center stage. But as is often the case in life, some foes are too powerful to be beaten, some stories are too sad to be told and some things are simply too unbelievable to believe.

Many of you have commented on how appreciative you were that I was able to share so many thoughts and experiences with you as the situation with Karyn unfolded. Those of you that truly know me understand that this is just how I am. I felt it was my obligation to make sure that all of you, Karyn's dear friends and family, were up-to-date on what was going on. And while our lives here were put on hold, the outpouring of support was truly amazing. Though I have not yet had the chance to formally thank the 250 of you who offered everything from meals to money, let me simply say that we could have never made it through this ordeal without your tremendous support and it humbles me to this very day. To whatever extent my posts were able to ease your anxieties as you watched and worried from afar, I am grateful. As it turns out, this blog has unintentionally become my journal from the front lines and I will personally see to it that it be bound and archived so Aidan and Lieneka will be able to travel to this confusing time when they are ready to do so.

This will be my final post to the blog and I feel it's a fitting time and way to end this chapter in our lives. I know Karyn would want us to be focused on the happy things in life and to remain grateful for all that we have. I encourage you all to post comments here if you wish to and I will see to it that they are all added to the archive. I intend to keep the blog online indefinitely so that it is always out there to serve as a reminder of how quickly life can turn around and how thankful we should be for every day we get to experience. It's easier said than done I'm afraid, but we do the best we can.

I am always happy to get messages from you all so stay in touch when you can. And to those of you who know what I mean...

Everything *is* gonna be alright.

I love you Karyn.

~Julian

Mother's Day and Memories

2007-05-13T02:42:00.000-07:00

It was this time last year that Karyn was about to be released from UCSF where she would spend roughly two weeks at home before being readmitted on May 30th. What we didn't know a year ago was that these were to be her last coherent times at home. I actually remember mother's day because of the sadness I felt that she was in such a weakened condition. She was tired a lot, there were headaches and she and I were up every hour or so during the nights. What strikes me about it now is that, with all the things she was going through, she was still a mother to the kids. She would talk to Aidan and answer his questions. Lieneka would climb up onto her lap and they would play. She was such a strong motherly force and it was something she loved like nothing else.

It is a fitting day to remember Karyn because she was such wonderful mother. In fact, some of my fondest memories are the moments of her motherhood-- and there were many. I learned so much from Karyn about being a parent and I continue to feel her influence today. I know she would be delighted by how well all the kids are doing...both ours and our friend's.

I am so proud of the mother Karyn was as well as the mother she will always be. That her influence continues today is testament to all that she was.

Happy Mother's Day, Karyn

~Julan

Marching On...

2007-05-06T07:53:00.000-07:00

Yesterday was the 2nd Annual Karyn Nelson Community team walk for the National Brain Tumor Foundation. It was a total success and I take my hat off to Thet for getting the ball rollng this year, and to everyone else who either donated their precious saturday, their money or both. Our original goal of $1000 was easily surpassed and is probably going to be over $5000 when everything gets counted. A big "hooray" to all of you, I am certain Karyn would have been both proud and moved by the continued show of support.

The weather was fantastic, completely opposite from the cold and fog we had last year. I realized as I was parking the car that this was the beggining of a new tradition for us. It's an event that we will continue to attend until we can no longer walk or until there is no need to raise money because they fouind a cure. There have been some promising developments in the world of brain tumor research and our very own Dr. Andrew Parsa still has 12 patients in his neuro-vaccine clinical trial who are alive (out of 12 who entered). At this point it's still about life extension, but I feel that it will become life preservation in our lifetimes.

That all said, I saw many sad sights throughout the day. There were fresh teams with fresh names on their t-shirts, there were people in wheelchairs and there were a few shaved heads. The one moment that sticks out for me was something that I heard about half way through the walk. Much like the conversation I overheard last year from the seemingly healthy woman at UCSF who had just been diagnosed with a glioblastoma, this was a male voice that came into focus walking behind me. "Well, I had had several clean MRIs and, though I knew it wasn't wise, I felt like I was cured." He went on to say that he started having trouble sleep about 6 weeks ago and a new MRI showed significant tumor growth. To make the proverbial long story short, he had a craniotomy 3 weeks ago and was on medication, chemo and had begun radiation. At that point I turned to see who this was and was a little shocked to see a young, healthy man who couldn't me more than 35. Though the event was quite crowded this year, I ended up seeing him many times after the walk had ended (survivors wear turquoise t-shirts)---in the food line, playing frisbee, etc. It's amazing the lengths that this horrible disease goes.

Of course, in all the sadness, there were many good sights too. First of all, the event was completely packed, I would guess that there were at least twice as many people there this year. Karyn's team found a nice big tree to park under and had a nice picnic while we watched the event and listened to the music. In attendance this year were Thet, Mick and Tika, Beatrice, Sam and Dante, Susan, Reilly and Georgia, Abby, Jack and Fiona (she's cute), Evelyn, me, Aidan and Lieneka. The kids are all a year older now and it was great to see them all playing with their Karyn Community shirts on. I realized that this will be more than just a fundraiser to us as time passes. It will always mark a terrible period of all of our lives and there were many moments where I wished I could just pop over to UCSF to talk to Karyn again like I did last year. It will also be a day where we feel more connected to that terrible time and remember just how much Karyn endured and how much we went through. As time goes on it's easy to let the hustle and bustle of the days get in the way of these important memories. Lastly though it will always be a time for our core group to be together and to see our kids age a year at a time.

To my dearest Karyn, I miss you more than ever, but I promise that we will all keep marching on... together.

~Julian

Karyn's 42nd Birthday

2007-04-18T23:59:00.000-07:00

Well, here we are. Karyn's 42nd birthday. I was just thinking about where we were a year ago today---celebrating her 41st birthday in the Solarium on the 8th floor of UCSF, about to face another craniotomy. I slept in the hospital bed with Karyn that night. Though we spoke a little of the potential of her not making it through the surgery, we were always focused on the prize, the potential of her recovering. How far we've come.

Still, looking back I find it a little ridiculous that we were hopeful given the nature of Glioblastoma, but I am thankful that we had that hope at a time where there was nothing else to hold on to. But I also regret not having the time to properly say goodbye, or at least acknowledge what was happening. I think of all the times I spent in that hospital sitting by her bed, and though we were right there with each other, I had no way of knowing what she was thinking. What would she say if she could?

So now what do we do? What would Karyn do? That's a question I find myself asking a lot these days. I suppose in the end we will never quite know what she would do in these times, but I think she would be proud of all of us. Mostly though I think she would be proud of the kids and how well they have adjusted to the brutal hand they have been dealt. And I know that she would want us all to be living life to the fullest---stopping to enjoy the little pleasures and not letting the bumps knock us too off course.

~Julian

The Day the World Stood Still

2007-01-26T08:13:00.000-08:00

It was one year ago today that I woke up from a night on the couch. I had offered to sleep there in hopes that Karyn would get a good night's sleep. Surely her insomnia was my fault somehow. I remember waking up to Aidan open my eyelids and laughing. "Why was Daddy on the couch?" I woke up.

I remember vividly as Karyn came down the stairs, wobbling for a moment, catching herself on the wall. I remember thinking it looked as if she was drunk. I said good morning and asked her how she slept. Not so well. She smiled at me at said not to worry and that we would figure it out. She smiled at me and I will never forget seeing the left side of her face drooping. The concern was immediate and I knew something was horribly wrong.

The night before I had been cleaning pictures off my laptop. I had pictures that went back to our honeymoon in Fiji and for some reason I found myself caught up looking at them. I remember thinking how happy a time that was and how thankful I was to be married to Karyn. For some strange reason I remember having a quick thought of "what if something ever happened to her?" as I looked at them. To this day I wonder how I had that premonition, but I was obviously tapped into a greater power...

I was probably quite worried looking at this point because Karyn made a comment to me about not needing to worry. I kept asking that she call Dr. Fetcher. "It's not 9am yet"... Well, 9am came, she made the call and we got the word that he did not like what he was hearing and she should get to the emergency room right away. Aidan was off at school, blissfully playing on the last day he would have a mommy as he always knew her.

We put Lieneka in the car and headed to Marin General. I could recall the details of that day in great detail if I wanted to, but I have relived that one so many times, it's good to let it slip into history. But as we sat in one of the rooms waiting to see a doctor, Lieneka sleeping in the stroller as her future was changing around her, Karyn was concerned that she was having trouble moving her are. "I'm starting to not be able to move my arm" she said. I held both of her hands and told her not to worry, and that it would be ok. All the while I was worrying inside. What was this? This was weird. Would she need to stay in the hospital tonight? What would I tell the kids?

The doctor came in and requested an MRI. This was a word that I had only scientific knowledge of. Another delay in our day. "Some change in plans huh sweetie?" I said as I walked beside her on the gurney as they wheeled her outside and to the MRI truck. She went in. An hour later she emerged. I asked the technician how she did... he said, "She did great" and said to Karyn, "You are lucky to have this guy." Thinking back now, he knew our fate but obviously couldn't say anything. He had just seen the demon that lurked inside her head. My mom came to get Lieneka and airlifted her to safety. After a nearly 2 hour wait to talk to someone, a doctor finally emerged and closed the door behind him. Whatever it was he said, I only remember one sentence, "I'm afraid this is more consistent with a brain tumor". The room felt 200 degrees, I was shaking and had to take my sweatshirt off instantly. The rest is truly history.

So here we are a year later. The void I feel every day is still here. I did lose that smiling angel in the honeymoon pictures. The kids lost their mother. We lost a friend.... a sister.... a daughter. I can't imagine the battle that laid before us one year ago today. But most of all, I can't imagine what Karyn's reality must have been like. The fear she must have felt is something I can't think about for too long before physically needing to think about something else. She bravely accepted every curve ball that came her way.

After last year I no longer believe in an all-powerful god. Surely any entity with control over this earth would never allow this to happen. Sadly, suffering is not reserved for Karyn and there are many more people suffering on the earth than not. But I still believe (as I always have) that there is something else to life and I know we will all end up in the same place someday--- we will be with her again. So for now, we live with what we have. I try to enjoy the memories I have and do my best to erase last year. But I am rarely successful. A smell, a song, a picture.... many things remind me of her and what she went through. And though the illness and its details will hopefully blur with time, my memory of Karyn is vivid.

Wherever it is you are Karyn, I will always love you. WE will always love you and we will never forget the light you shone on this often darkened place.

~Julian

Merry Christmas

2006-12-25T08:40:00.000-08:00

I woke up this morning and realized that more than 5 months have gone by since Karyn passed away on July 16. As I navigate this holiday season I keep having memories of this time last year. Lieneka was just over a year old, Aidan was 4 and life was normal for us. It's hard to comprehend how much would change on Jan 26th and how much our day-to-day lives were about to be altered.

There have been many times where I have tried to write something to post to the blog but nothing ever came of it. Now here I am, 2:32 AM... Christmas day. Aidan is asleep beside me, the visions of sugarplums (and R2D2s, Nintendo Wiis and RC Cars) are surely dancing in that magical head of his. One thing is for sure, that clattering I just heard out of the deck was surely Santa making his way into the living room to place one last present.

Christmas Eve is a big celebration for us and this year re-iterated the strength of tradition in our family. We had the entire family here (nearly 30 people now), we ate like royalty and managed to carry on the centuries-old tradition that is called Vigilia. Though several people are no longer standing beside us, their collective presence was certainly felt. When I think about last Christmas it's quite an eerie feeling for me. We had no idea what the future held for us, the fear, the pain the intense suffering and the unbelievable sadness. As I lay here writing this I realize that we are all in this position. Tomorrow is not a guarantee. Life is random. Things will happen. It can always be worse. It can always be better. At least you have your health. Money will not buy you happiness. A close family is a strong family. Love prevails.

Life goes on for us, and like the traditions we hold so dear, Karyn's memory will always be with us. Though I may not know where tomorrow will take me, I know that I will continue to push forward in spite of everything we have had thrown at us. 2006 has taught me to live for today, dream about tomorrow and fondly remember yesterday. It's where we've been that makes us who we are .

So as I enter a year of firsts without my beloved Karyn by my side, I leave you with these memories. Memories of her laugh. Of the joy you could see on her face when she was with Aidan and Lieneka. Her sense of style. The devotion to her friends and family. Her creativity. Her kindness. Her gentleness. Her beauty. She was everything in the world to me. There are times when I least expect it when I will see her in the faces of the children. Often times it's such an amazing likeness that I stop in my tracks in an attempt to get one last look into her eyes. Or to feel just one more of those wonderful Karyn hugs. To hear her say hello one more time. Or goodbye.

We all love you Karyn...

A Few More Words

2006-09-11T07:56:00.000-07:00

The Memorial has come and gone and it's Monday morning.

I realized there are many things that I want to say to everyone so
check back soon...

~Julian

Obituary and Hotel Info

2006-08-24T17:20:00.000-07:00

For those of you coming in from out of town for the Memorial that need a place to stay, we have secured a block rate at the Marriott in Larkspur. Here is a link to the PDF:

http://www.karyndesigns.com/obit/marriott.pdf

Also, a number of people have asked that I post the obituary here on the blog. It ran in several papers Sunday, August 13th.... the SF Chronicle, the Marin IJ and the Press Democrat. Here is a link to an HTML version I have put up that allows the picture to be displayed.

http://www.karyndesigns.com/obit

KARYN NELSON, 41, FAIRFAX

Karyn Nelson passed away peacefully on July 16, 2006 in her Fairfax home following a five month battle with a malignant brain tumor. During her forty-one years, Karyn lived with a passion and incredible joy for life. She was devoted to her husband, Julian Kwasneski, son Aidan 4 ½ and daughter Lieneka 1 1/2. Karyn also is survived by her parents, James and Kathalyn Nelson and sisters, Erica Nelson M.D. and Evelyn Nelson Chandler, four nieces and nephews and an extended family in Marin and Sonoma counties, Holland and Brazil. Karyn enriched the lives of a large circle of friends throughout the country and in Europe where she was known by all for her love, honesty, creativity, generosity, compassion and strength of spirit.

Born on Easter Sunday, April 18, 1965 in Englewood, New Jersey, Karyn received her primary education in Hudson Ohio and graduated summa cum laude from La Canada (California) High School. She went on to attend Claremont McKenna College, studied abroad her junior year in Madrid and London and graduated with a B.A. degree in International Management. Early in her career, Karyn switched from business management to graphic design and for twelve years worked in a number of design studios in Los Angeles, San Francisco and Milan Italy. In 1998 Karyn established her own studio, Karyn Designs, that thrived until January 2006 when she first learned of her illness.

A Memorial Service will be held at 11:00 a.m. Saturday, September 9, 2006 at San Dominico School, 1500 Butterfield Road, San Anselmo, CA 94960.

A trust fund has been set up for their family. Contributions can be made to the Karyn Nelson and Julian Kwasneski Family Fund c/o Ann Davis, 950 Northgate Dr., Ste. 307, San Rafael, CA 94903.

Art Project for Karyn's Memorial Service

2006-08-08T23:05:00.000-07:00

We would like to request your participation in a project for Karyn's memorial.

Each one of us has special memories and special pictures from our best times with Karyn. We would like each person to put together an 8.5" x 11" collage to be displayed at the memorial. The collage can be anything: pictures, drawings, words, paintings, pressed flowers, anything. Karyn made each person she was with feel so special and so loved. I know everyone she came in contact with has at least one photograph, or one memory they can write down and share.

Please send the collage to me or Thet no later than Wednesday, September 6th. We are asking for a consistent size 8.5” x11”, so we can put the collages in a scrapbook after the memorial and give one book to Jim and Kathalijn Nelson and one book to Jules and the kids. Therefore, please make 2 copies of the collage.

Since these pictures of Karyn are precious, please send me color copies of your collages so you can keep hold of these pictures. Please put your name on the back of your collage and briefly how you know Karyn.

Please don't be intimated by this project. If this is something you can't muster right now, no worries. The last thing we want to do is put pressure on anyone at this time. Only do it if it feels right and easy for you to do. If you just want to share a couple of pictures on a page, that's great. Karyn loved art projects so we thought this would be something she would appreciate, and it might be therapeutic for all of us.

It will also be great to see the many aspects of Karyn represented in these pages. Again, these will be displayed at the memorial.

Addresses to send collages:

Jacqui Lopez

3604 Meier Street

Los Angeles, CA 90066

310-699-0211

Thet Shein Win

848 Norvell Street

El Cerrito, CA 94530

Please pass this on to anyone you think might be interested in participating. I hope you all are doing ok during this challenging time.

warmly,

jacqui

Karyn Memorial

2006-08-02T10:02:00.000-07:00

Hello everyone...

I wanted to let you all know that we have arrived at a date for
Karyn's memorial service. It will be held on September 9th at San
Domenico school. Though we have not set a time yet, I am fairly sure
it will be starting at 11am. For those of you that aren't familiar
with San Domenico, it is a beautiful school located at the end of
Butterfield Rd. in San Anselmo.

I also wanted to say a quick thank you for all of the cards, well
wishes, offers to help and phone calls. Though it's only been a few
short weeks since Karyn passed away, it feels like months ago and her
illness (thankfully) seems like years ago. That said, it is always
present in my mind what has happened, the pain that she endured and
the emotional suffering she withstood. I have been archiving this
blog for the future, sometime when Aidan and Lieneka will be old
enough to comprehend what happened to the wonderful person that is
their mother. As I read the entries now, I realize what a trance I
lived in and how my focus was so strong that I often was oblivious to
the reality around me. Sadly, the thoughts I have now are filled with
sadness over what it must have been like to be Karyn. To watch such a
wonderful life crumble and to be fully aware of where her road was
leading her.

Now that we've arrived at this new place, I am happy to say that I
have already fulfilled one of Karyn's wishes. There were two things
she relayed to me just before her second major surgery so that I
would know what to do should she not survive that operation. Though I
was never fearful of that at the time, I fortunately let her tell me
what her wishes were. One was to plant a magnolia tree in the back
yard, something I did for her on Sunday, right around the time she
left us 2 weeks prior. For those of you that know the house, it is in
the middle of the lawn and can be seen from all three bedrooms. Just
this morning I woke up and saw the leaves shimmering in the sunlight,
I thought of her and then realized that the tree was in the right
place. Her second wish has yet to be fulfilled, but it will happen soon.

Many of you have been asking about how we are doing, some of you have
called, some of you have written. The truth is, we are managing
pretty well here. The size of this loss in not something that I can
comprehend, so I spend my time focused on the kids, setting up
playdates, going on adventures (we went to the SF Zoo yesterday) and
planning for the future. I do not avoid what happened with them---
especially Aidan. When he says he misses his mommy, I tell him how
much I miss her too. This is not something to run from, but to run
straight in to. We cannot change a thing that has happened, and to
try to fight it or somehow think that actions would change anything
is wrong. Karyn would want us to move forward as best we can, and I
think she would be proud of us right now.

I will update everyone on the final plans as soon as we lock things
down.

~Julian

Our Beloved Karyn

2006-07-16T16:59:00.000-07:00

I am saddened to report that our dear and beloved Karyn passed away peacefully today, Sunday July 16th, 2006 at 2:34PM with her mother Kathalyn, father Jim, sister Evelyn and myself by her side. It is a beautiful summer day here in Fairfax and the sun is shining brightly. At long last, our angel is suffering no more.

When I sat down to write this message to you, there was a Neil Young song playing that I felt was a fitting addition to this posting.

You are such a woman to me
And I love you
Our love will live
Until the end of all time

Thank you to everyone for caring so much about Karyn and our family over the course of her illness, it was (and continues to be) a tremendous help and comfort to us.

We will post any future arrangements to the blog so please continue to check back.

~Julian and the Nelson Family

Home Sweet Home

2006-07-09T08:36:00.000-07:00

I thought it would be nice to report how things have been going since
Karyn got home on Friday as I am sure many people are wondering.

When she arrived here, the EMTs carried her, eyes wide open, through
the back yard, up the ramp, through the kitchen, the dining room and
stopped in the living room. She was there staring at the large mural
on the wall, for those of you that have not been here, it depicts Mt.
Tamalpais and the seminary building. Then they carried her up into
our bedroom where she is now, resting comfortably in bed.

She is still awake at times and she is surrounded by family... me,
the children, her mom and dad, sister Eveylyn and soon to be sister
Erica as well as my mom and my aunt who has been monitoring her vital
signs off an on. There have been a few close friends who have also
visited and she has definitely acknowledged their presence.The
children have been nothing short of amazing through this stage and we
are all so happy that we made the decision to bring her home. The
kids can go up there at will to see mommy. Aidan goes up there and
acts as if nothing is different, he makes little Lego rocket ships
and explains them to her, gives her things to eat and sometimes just
goes up to kiss her hand. He has made us all so proud---he is a
wonderful little man, an obvious offspring of Karyn. Lieneka
similarly has no hesitation to go up there, lay little toys next to
her, grab her hand or lay her head down on her shoulder. There is
nothing her that is not peaceful.

The days are filled with the normal things she loved so
much....children playing, people cooking, talking, watering the lawn
outside here window, etc. While she can't really communicate much with
us any more, it is definitely obvious that she is taking in all of
her surroundings.

~Julian

She's home!

2006-07-07T16:13:00.000-07:00

She's home!

Homecoming

2006-07-07T14:49:00.000-07:00

After a meeting with the palliative care team at UC, we have made the
decision to bring Karyn home where she belongs. This is, after all,
the goal we have had from the very beginning---to get her home and to
have her here with us. As I type this she is most-likely in an
ambulance for what is probably her final trip across the Golden Gate
Bridge, through southern Marin and eventually into our beloved home
in Fairfax. I can't express in words how happy this decision has made
us---there was something about being in such a cold and sterile place
never felt right.

We do not know what kind of timeline we are on right now, but we are
told it will not be all that long. As you can all imagine, this is a
very difficult time for us all and we know you are all sharing in
this sadness with us. She is a beautiful human being, an amazing
mother, a real woman..... and a true angel among us.

You can all rest easy tonight knowing that, for the first time in
nearly six months, she will be sleeping in her own bed with me right
there alongside her and her children and close family all under the
same roof. And when they carry her in through the front door this
afternoon, one thing will be for certain.... she will know that she
finally made it home.

~Julian

MRI Results

2006-07-06T11:27:00.000-07:00

Jim and I met with Dr. Chang yesterday to go over Karyn's latest MRI
from July 2nd. Sadly, the tumor has spread and is causing a massive
amount of swelling in the brain. In the opinion of both Dr. Chang and
Dr. Parsa, there is no real hope for recovery at this point and
recommended that we switch our focus from curing her to keeping her
comfortable in her final days. It is all speculation at this point,
but Dr. Chang felt that we are looking at days or weeks and not months.

Currently we have not figured out how to proceed and what hospice
option to select, but these decisions will be made in the near
future. While we realize that many people may want to visit her, the
truth is that she is barely awake these days and it is probably best
that your last memories of her not be in this state. As you can
imagine, her family and I are going to be spending as much time as
possible with her now and privacy is important to us.

Somehow we will all get through this, and I want to sincerely thank
everyone for all their help, support and concern over the past 6
months. This is surely the hardest thing any of us have ever had to
face, and knowing that we have the love and support of our family and
friends is a help to us all. Karyn would be very proud of you all.

I will post more details as they become available.

~Julian

Out Of ICU...Moving Forward

2006-07-04T23:39:00.000-07:00

Karyn was moved out of ICU today and onto the 8th floor at UCSF. Her
condition has stabilized to the point where she no longer needs the
level of care that they provide on the 11th floor.

Jim and I met with Dr. Parsa this morning and discussed the most
recent MRI results with him. While there was no real growth in the
tumor mass, he is fearful that there may be activity going on on a
cellular level. Therefore, the plan is to focus all efforts on
getting her off antibiotics and back on chemo----most likely Temodar.
For the next few days he will be monitoring her neuro symptoms and
seeing how the shunt is effecting her.

Hopefully we will have more news soon....

~Julian

Saturday Surgery

2006-07-01T08:50:00.000-07:00

Yesterday's surgery is now scheduled for today at 2pm. We had a brief
meeting with Dr. Parsa to discuss what was going to happen and there
is not much new news there. He intends to install a titanium mesh to
replace the missing bone flap which he will make slightly smaller
than the bone he is replacing. This is to relieve the tension on the
skin in an effort to aid in the healing. Up to this point the wound,
due to her irradiated skin, has had a lot of trouble healing.

He will also be converting the drain that is currently in her head
into the shunt as it is in the perfect location right now. This will
route all the fluid into her abdomen and should eliminate all the
seepage problems that have been plaguing us. One new bit of news is
that the lack of communication between the two ventricles is no
longer an issue as once believed. This is good news because it means
that she will not need to do this procedure in the future.

Aside from discussing the surgery, Dr. Parsa did begin talking about
the next step---essentially to get her on the chemo as soon as
possible. This will depend on the ID (Infectious Diseases) team
giving the "all clear" for infection. The biggest risk of taking
chemo is that your immune system gets compromised and puts you at
risk for infection.

The fact that she has lost her speech is still a mystery and we are
hoping that the shunt will have a positive effect on this. The plain
reality of the situation is that it could also be being caused by
microscopic tumor cells effecting certain parts of the brain.
Unfortunately we can only speculate right now until she is able to
have another MRI in the near future.

I should add that Dr. Parsa also reminded us what a serious disease
she has and how critical her condition is. Karyn has perhaps the
biggest fight in front of her and we are hanging everything on the
chemo because there will not be another surgery---there simply cannot
be another surgery to remove tumor as her system would not be able to
tolerate it.

Once the surgery is done the plan is to watch her in ICU for a few
days, then move her downstairs to the 8th floor for a bit more
recovery before being released. There is still some debate as to
where we will release her----either a skilled nursing facility or
home. Obviously I am going to do everything in my power to get her
home as we have sadly become quite skilled nurses.

So here's to Karyn and all she represents in our lives....and here's
to a complete and full recovery.

~Julian

Surgery bumped. More info as

2006-06-30T16:53:00.000-07:00

Surgery bumped. More info as I get it.

More Surgery

2006-06-30T10:13:00.000-07:00

Karyn has now been scheduled for the shunt procedure tonight. Dr.
Parsa intends to convert one of the new drains into a shunt since
it's in the right place already. He also intends to reopen the
incision and install a titanium mesh in the place of the bone flap.
Whether or not this is a permanent solution we don't know, but we
should find that out later today when we meet with him.

The plan now is to get her out of the hospital, over the antibiotic
treatments and back on the chemo. It sounds like they intend to
discharge her later next week.... we've got our fingers crossed.

~Julian

The tube is out and

2006-06-29T11:35:00.000-07:00

The tube is out and Karyn is breathing on her own. First word was "hi" when Thet showed up. Now to get her some food.

She made it through the

2006-06-28T21:49:00.000-07:00

She made it through the surgery...they left the breathing tube in and it will stay in all night. No one should have to see this.

Shunt Postponed

2006-06-28T20:37:00.000-07:00

Today we received more proof that nothing ever goes according to plan
around here. I arrived to find a bit of a commotion in Karyn's room.
She was all readied for the journey downstairs to the O.R., unplugged
and prepped but no one seemed like they were going anywhere. Within
moments it seemed, Dr. Parsa appeared and expressed some concern over
Karyn's wound. He began to poke and prod, apologizing to her as he
did and turned to tell us that he felt strongly that the shunt be
postponed and an alternate plan be put into motion. He suggested
that, although I.D. had cleared her for the shunt (since the
infection are indeed gone), the risk of another infection was too
high. He proposed reopening the incision, removing the skull bone
plate and installing two new drains to replace the old ones. I was
still in shock at the thought of having the large of a piece of skull
missing when he asked if I was ok with it. I told him that I honestly
had no idea what to say and didn't feel I was in a position to make
that call either way. He then said, "Well, I'm kind of telling you
what I think you should do."

At that point Jim and I just said that she was in his hands and that
if he felt strongly that this should happen, then this should happen.
So, here we are... 8:30PM and still no sign of her on the 11th floor
(though we are told she is on her way up).

What does this all mean? Well, it's still sinking in for us, but what
it essentially means is that she will have a large hole in her skull,
covered only by the skin flap. This will provide an instant relief of
any pressure and should have a positive effect on her neuro status.
Dr. Parsa noted that this is a process that is common among head
trauma cases and that she could months or years without the piece of
skull there.

The next step will be to install the shunt, perhaps as early as
Monday, and then get her back on the Temodar chemo as soon as
possible. Then, someday down the road, they will create a replacement
bone plate and she will need to return to UCSF for yet another
surgery to put that plate in. You've heard of people having plates in
their heads.... well, you can add our sweet Karyn to that list of
people.

Today marks the fourth week she has been here in the hospital.
Hopefully this new procedure will pave the way for a quick return
back home. And hopefully we will get to hear her beautiful voice
again soon....

~Julian

Change in plans...they are now

2006-06-28T18:10:00.000-07:00

Change in plans...they are now removing the bone flap and putting in a new drain. It is under way now. Details when I get to my mac

MRI Results!

2006-06-26T18:59:00.000-07:00

Well, I did not come to UC today with the intention of finding out
what the results of the MRI were. But as I boarded the elevator to go
to the 11th floor, in walked Dr. Parsa. "I caught ya" I said. He said
that he was hoping to run into me because he had seen the MRI results
and would come to see me in the ICU. Well, I started to worry
instantly since there had to be a bad reason why he would not just
talk to me there....

Anyway, he finally arrived with Dr. Wang at about 6:30PM and said
that there was indeed a slight amount of tumor growth, but definitely
nothing to ring the alarms over. He used words like "slight" and I
was left feeling that this is good news under the circumstances. So,
we are going to continue with the plan to place the "right oxcipital
shunt" ---surely spelled wrong, but a procedure that he feels should
help her "wake up". He did go on to mention that, worst case, he
would have to go ahead with a more serious procedure to re-establish
the communication of the ventricles. But right now, this is not in
the plan.

Another worthy thing to mention is that, while Jim and I were sitting
here watching her sleep, she began to move her left foot, then her
left leg. It wasn't much, but it was movement and I pointed it out to
Jim in time for him to completely notice.

So sometimes we do get good news.....and I am breathing again.

~Julian

Surgery Cancelled For Today

2006-06-26T13:42:00.000-07:00

A few bits of information....

Dr. Parsa mentioned over the weekend that he wanted to do an MRI to
make sure that Karyn's lack of speech was not due to the tumor
growing.....and if it was, he was going to call off the surgery
pending a shift in our plan of action. After a few false starts
getting to the MRI room over the weekend, Karyn is getting wheeled
down at this moment so we should have some answers soon.

I don't like to speculate because all I expect is bad news, but the
fact that her headaches had vanished since the cyst was removed makes
me think that this change in her mental status is due to the excess
of fluid in her head. Still, we all know that there is a bit of tumor
remaining that had crossed the midline into the left side of her
brain---and this is where all the personality and speech areas are.
Needless to say, this is quite scary for all of us as we wait for the
results of that MRI.

For now the surgery has been cancelled and rescheduled for Wednesday
to give us a little more time to review the results. There probably
won't be any information for the next day or so, but I am holding my
breath and have everything crossed that this will turn out well.

One other positive note was in something Dr. Parsa said to Erica on
Saturday. He said the reason he got interested and ultimately heavily
involved in the immuno-research for tumors was that the statistics
showed a dramatic increase in the long-term prognosis for those
patients who had gotten infections.

~Julian