Steffi's Page

In Memory of Stefanie Kaestner
*June 29, 1963, ⁺May 06, 2005

Stefanie came to the United States on May 10, 1997 because of me, Hans, at the time her boyfriend. I had finished my Ph.D. in cardiac molecular biology in Freiburg, Germany, and was very excited when I learned about a post-doc position in Seattle, Washington, USA. Steffi and I worked in the same laboratory in Freiburg and that is how we got to know and eventually love each other. On August 27, 1996 I arrived in the United States and started a post-doc in the lab of Chuck Murry. After a brief visit in October 1996, Stefanie was taken by the charms of Seattle, the sea and mountains (and maybe by me a little bit, also). She decided to follow and moved to Seattle on May 10, 1997. It was a warm and sunny day. She started working as Research Technician at the University of Washington and after a rocky start landed in the laboratory of Zipora Yablonka-Reuveni where she met good friends for life (Priscilla Natanson, Maria Elias, and Gretchen Stuenkel). After 3 years in Zipora's lab she was ready for a new challenge and switched to the laboratory of Steve Hauschka, a renown skeletal muscle researcher and a wonderful person. More friends for life were made in his lab.

July 27, 2003	At Mount Rainier NP, White River Campground: End of July the 'Five Hero's', that is our good friends Ulrike, her husband Franz and their 3 kids, visited us in Seattle. They were on a round trip going back to California. As often before we went camping at Mount Rainier NP, one of our favorite places. We have a nice evening with BBQ and campfire, everything is wonderful. In the early morning hours on Sunday Steffi has her first seizure temporarily paralyzing her left side (face, arm and leg). The seizure stops after ~1-2 minutes. We are very confused and can't make much sense of it. But Steffi is the healthiest person on earth, it just can't be anything serious. Soon we go on hiking on Mount Rainier and everything is just an afterthought at most. Campfire the night before Steffi's first seizure. With the five Hero's, Ulrike & Franz & kids. The next day, hiking on Mount Rainier, views of Mount Adams. Nice.
July 29, 2003	Two days later another seizure and a strong feeling of anxiety occurs at work. A colleague (Dr. Elina Minami) sends Steffi to the ER. A CAT assay follows, the ER team sees a shadow or lesion. The neurosurgery resident consults, laughs at the image and dismisses the suspected 'lesion' as nothing. Steffi is put on dilantin (anti-seizure medication) and bikes home. We missed each other at the ER and when she arrives at home she is confused, anxious and cries. We comfort each other, everything will turn out harmless because she is the healthiest and strongest woman. We know this.
July 31, 2003	Over the next days, weeks a lot of tests are performed. The spinal fluid analysis is negative. More MRI's follow and out of a sudden it seems the evidence for a primary brain tumor is mounting. This cannot be. Why would somebody with Steffi's physique and health develop a brain tumor?
August 18, 2003	We have an appointment with the neurosurgeon (Dr. Silbergeld). He is straightforward and gets to the point quickly. He strongly recommends full craniotomy as opposed to just biopsy surgery to check what's going on in there. He believes Steffi has a primary brain tumor of unknown grade.
August 27, 2003	The day before Steffi's surgery. This is very tough, hard to describe and very unreal because nobody knows what to expect from the next day. Sabine and Ed from Salt Lake City are visiting. It feels very good to have them here. We have a BBQ at night, Peter & Lara, our neighbors, come over, too. We drink wine, have fun, yes. It is good to get distracted. Steffi & I go to bed early, the next day will be long and scary.
August 28, 2003	The day of brain surgery: Technically it reads "Right craniotomy for right frontal lobe tumor" at the UW Medical Center, Neurosurgery in Seattle. A very long day for us. We get up at 4 am, arive at the clinic at 5 am, preparation for surgery takes several hours (haircut, MRI, anesthesia). We both cry when I have to let her go into the pre-OP room. I go back home, have coffee with Ed and Sabine and go back to the clinic later. I wait in the waiting room and the waiting is terrible. Then, after ~4 hours the neurosurgeon Dr. Silbergeld comes out and tells me that Steffi is fine but also that they only could remove small pieces of the tumor due to its critical location in the motor strip. I don't really realize the meaning of his words at the time, I am just glad she survived it and is doing ok. I am grateful for what Dr. Silbergeld did and for what he did not attempt to do. Steffi is brought to the ICU and I wait to see her. The waiting room is a tough place. I see Cathleen's family and her husband Matt. They are waiting, crying often. I do not know them, don't know who they are waiting for but it touches my heart. We will get to know them a couple months later. Cathleen, their daughter and Matt's wife, has had brain tumor surgery, too. Later we will become friends. Steffi's colleagues Jean and John keep me company, bring food for me. When I see Steffi in the ICU it is very, very hard, she is so out of it. Dr. Silbergeld comes too and he is very sweet, very caring. The ICU nurses are very, very good. I will spent the next days at Steffi's side, sleeping in her room, not going home. She recovers very well and we both want out, so Steffi has all the motivation in the world to start eating, getting up, eventually talking a few steps.
August 31, 2003	We make it outside for a short walk and Steffi has at least some appetite (she makes sure the nurse brings extra yoghurt for me), good enough for a discharge and we are sent home from the hospital. We are so happy to get out that we cry on the way home. It is sunny and warm and we really enjoy our backyard now, it is the best place on earth at the moment. Steffi recovers very well in the following week. She has always been in great physical shape and that helps a lot to get through this. We take walks around the neighborhood. Steffi still has focal seizures mostly affecting the left side of her face. The seizures are very scary in the beginning for both of us. Of course, Steffi thought they must be gone once the tumor had been removed. At home in the backyard, heaven.
September 12, 2003	This will become our Judgment Day: We have an appointment at the clinic with the neurosurgeon (Dr. Silbergeld), the radiooncologist (Dr. Korb) and the neurooncologist (Dr. Spence). This is not fun at all, too small room, too many people with serious faces in it. The neurosurgeon tells us point blank that Steffi has the worst kind of all brain tumors and after some explanation as to why this is the worst kind (the 'sand in the water' story referring to the migratory nature of these tumor cells) he leaves us to the other two doctors since there is nothing else he could do for her. Dr. Spence is much nicer, a father figure, but gives her max ~16 months to live. But she can also take part in trial that may offer more hope. Dr. Korb has no trial to offer (because they max the dose anyways), he is just very nice. Summary of the neurosurgeon/ neuropathologist's report: Glioblastoma multiforme, grade IV. Multiple fragments (biopsies) of a 3x2x1.5 cm tumor were removed during surgery for histopathology. Gross resection was not possible due to location in motor strip. Not a good Friday. We do not drive home immediately, we do some grocery shopping, go to a park, don't remember which. In the evening we stay home, BBQ, watch a movie later, get distracted. Then, we start researching brain tumors and cures for such intensely. The more we read the darker the picture becomes.
September 16, 2003	The first immediate consequence of our consultation is that Steffi starts the standard fractionated radiation treatment (33 treatments, 5 days/week). Steffi works full time, we bike to work together as usual, go running together as usual and Steffi plays squash again with her friend Jitka. Life almost seems normal. But it is not. We learn more and more about brain tumors and GBM's in particular and it is not good news what we learn. This is the time when we get to know good friends in a whole new way. Friedemann and Danielle become a big part of our story. Friedemann Schaub (Fred) and Danielle Hoffman (his girlfriend at the time, now married) were at our wedding and Fred and I came to Seattle only a month apart in 1996. He is a MD and started a post-doc doing basic research. We became friends then, played squash, went hiking together. Later he decides to stay in the US, gets his PhD (he is now a MD, PhD!) and gets more and more into alternative healing and problem solving approaches because neither science nor western medicine offer all the solutions. Danielle is a Reiki master and much more. Steffi starts to learn alternative ways to healing with Fred (http://cellularwisdom.com/) and his wife Danielle (http://www.remembertobreathe.com/). Fred and Danielle attended our wedding and Fred and I came to Seattle only a month apart. He is a MD and started a post-doc doing basic research. We became friends then, played squash, went hiking together. Later he decides to stay in the US, gets his PhD (he is now a MD, PhD!) and gets more and more into alternative healing and problem solving approaches because neither science nor western medicine offer all the solutions. Steffi profits enormeously from her sessions with Fred and Danielle. She regains her confidence and belief to become healthy again and to beat the tumor. Over the next months her personality and character become much stronger, she feels she becomes a more complete, deeper person. She practices meditation and visualization and feels very good doing it, learning more, seeing progress. She fights very hard. Focal seizures continue. Left: Danielle & Fred at our wedding.
September 29, 2003	Steffi also starts with chemotherapy (Temodar, oral) parallel to radiation therapy. Combination therapy may have beneficial effects, for those who can take a doubl beating. Steffi tolerates the combination pretty well, some nausea sometimes, some tiredness towards the end of a cycle, but she is tough. Still working 100%, biking, running, squash. Focal seizures continue. Bike tour on Vashon Island, September 2003. Very hilly, Steffi is in great shape. This feels good.
October 17, 2003	On this day Steffi meets Cathleen, a young brain tumor patient, at the UW when they both wait to pick up drugs from the pharmacy. As mentioned earlier Steffi and Cathleen were in the ICU at the same time and in the waiting room I saw Cathleen’s parents and her husband Matt. Cathleen’s right side is affected by resection of her tumor and possibly a stroke during surgery. Cathleen is in a wheelchair, she cannot walk and has trouble speaking. Steffi feels an immediate, deep connection to Cathleen, she wants to help her and we start seeing them. Cathleen is motivated by seeing how well Steffi is doing. Cathleen is often frustrated. Before her ER admission she was an avid outdoors person, mountain climber, athlete and planned to study medicine at the UW. Her life is shattered now but she is working very, very hard to get better and she succeeds little by little. We become friends. BBQ at Cathleen & Matt's house in the summer of 2004.
November 27, 2003	Thanksgiving at Ocean Shores. This year we celebrate with the 'Guenter & Annemiek' crowd, very nice and funny folks. Guenter is a Biochemistry Professor at the UW and my squash partner, his wife Annemiek is from Holland and a doctor. We have become good friends and they know a bunch of very nice people. We go running in the morning, then drive out there. It is a true Thanksgiving. We hang out together, cook together, talk, walk on the beaches, read, relax. Steffi has a few seizures, nothing new nor serious. Left: Dinner prep with John, Annemiek (Mieks), Guenter (Gue, organizing the trash can?) and Stef. Right: The day after.... a hike at the beach, beautiful weather in November.
December 04, 2003	First follow-up MRI: We are very, very nervous. Then the results, everything looks clean, so clean! "Your MRI looks great!" welcomes us Dr. Spence. He has fun with these news, too. Not only no tumor progression, no tumor enhancement at all. We are so grateful. Steffi believes very much that her combination treatment, i.e. conventional therapies combined with meditation, self-healing, Reiki, is the key to this success. We are very grateful and lucky to have Dr. Spence, Dr. Korb, Dr. Friedemann and Danielle. The radiation treatment ends after 6 weeks, the Temodar chemotherapy continues. The seizures become less frequent, sometimes Steffi is seizure-free for an entire week. Life is pretty good.
December 24, 2003	This Christmas is different. We celebrate our first ever Christmas together and enjoy decorating our first Christmas tree together. It is wonderful. Steffi and I used to go to Germany every year, then splitting up and celebrating Christmas with our respective families. Never together. This year is better. Friends from Germany (Birgit & Peter) and local (Annemiek & Guenter) join us for swiss cheese fondue on Christmas eve. Steffi, Annemiek, Guenter and Birgit go to church before, Peter and I stay home, talk. Then, we have a very funny evening. On Christmas Day, Birgit, Steffi, Peter and I drive up to Snoqualmie Pass and go snow hiking. Steffi is on a break from the Temodar chemo. She will start the cycles again in January (5 days chemo/ 3 weeks off). Everything really feels like Christmas. Grateful. Happy. Annemiek, Jeannette & Todd & Sophia, Guenter, Birgit & Peter on Christmas Eve at our house.
December 31, 2004 Sylvester	New Years Eve (Sylvester): This year will be quieter than usual, no big party. Instead we go to the 5th Avenue Theater and listen to Carmina Burana with Martin & Simone. Afterwards we go to their house, have a late dinner and watch the Space Needle fireworks from their rooftop. 2003 passes, a scary year but also filled with wonderful experiences and new friendships. We drink champagne and very much hope that the new year will be good to us.