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WHAT'S HAPPENING Archive November 2004November 14, 2004 "With Gemini!"We are in the midst of our incredible series of events with Gemini, a.k.a. San and Laz Slomovits. A quick email to San and Laz about their August schedule has evolved into a wonderful tribute to Simon. Although we could not find a date to have San and Laz come for Simon's memorial service, we immediately began to plan this debut weekend for Gemini in Utah.After learning that Simon's life was near its end, Laz began to write his song for Simon, "You've Crossed Over". We received the song as a soothing balm to our sadness, with its lovely tune and sentiments capturing Simon so well. Laz's recording of the song was played at Simon's service. For Simon's grave-side service we chose two other Gemini songs, "Don't Forget to Sing" and "Bye, Bye", which were played and sung by Sarah Williams at the cemetery. As you can see, we had San and Laz very much with us for Simon's service. (You can hear a snipit of Laz's song on the video clip of a TV story about the Uintah Lemonade Stand.) Wanting to offer a memorable tribute to Simon sooner rather than later, we settled on our November dates for Gemini to come out to Salt Lake City for a series of performances. We (mostly Laz and Mary) have worked for the past couple of months together with the First Unitarian Church, Uintah Elementary, and the Virginia Tanner Fine Arts Preschool to develop a program that reaches many people and places that were important to Simon. And, here we are! San and Laz are gracious guests in our home, and we're enjoying meals and conversation. There's not much down time. Saturday's concert at the Unitarian Church drew an enthusiastic audience, and we all drew strength from the sunny, blue sky (a rare occurrence this fall). San and Laz gave a riveting performance, including the public debut of "You've Crossed Over". Audience participation was energetic in singing along and doing sign-language motions to the songs. After the concert, a small group took a walk together to Simon's grave, which is in Mt. Olivet Cemetery, essentially right next to the church. Laz brought along his new bamboo flute to play some tunes. The children, led by Simon's good friend Miguel, began to gather pine cones and twigs to lay on Simon's grave, which remains unmarked by a headstone. It was a lively activity. At one point, Miriam happily said, "We're having fun decorating Simon!" A friend of Miriam asked if Simon was in the ground. We explained about the urn inside a box inside a hole in the ground, covered with dirt. We explained about the body going to a heat chamber to turn into ashes. And we described the lovely onyx stone of the urn. Many people seem surprised to learn that Simon's remains are buried in a cemetery after cremation. Where I come from (Ohio), it's quite common to do urn burials, but it seems to be less common here in Utah. On Saturday evening, our church held its annual auction/fundraiser. We had lined San and Laz up to work with the children who were together for childcare while their parents attended the auction. They had a great time singing songs, playing with "limberjacks", and playing musical chairs to live music. Up at the auction, a basket of Gemini recordings, kindly donated by San and Laz, fetched $60. Mary's auction item (an evening at the home of David Owens featuring elegant supping and music by Gershwin, Kern, and Porter) went for $70 per person to a group of twelve. All proceeds of the auction will go to the Edison School in Salt Lake City to establish a take-home reading library for a population of students who come from homes where books in English are a luxury out of reach for many families. (Time to start learning my music with David!) Today, Sunday, Gemini graced the morning services at First Unitarian. It was a memorable morning. Reverend Tom Goldsmith paid tribute to Simon by lighting the chalice today in Simon's memory and by explaining the relationship between Simon, the music-loving child and cancer patient, and Gemini, who reached out to him so lovingly in Ann Arbor. The adult services included a child dedication ceremony, and the juxtaposition of this joyful moment rested in challenging balance with the recognition of Simon's premature death. The service followed a theme of life journeys, and Tom spoke about the seasons of life (spring as childhood, summer as young adulthood, autumn as middle age, winter as old age). Interwoven with music by Gemini (including singing along and doing sign-language), the service covered amazing bases in the human experience. A particularly touching part of the service was the song "Waltz of the Old Lovers", depicting a couple in their seventies, sublimely waltzing together. We're taking it easy this afternoon. I'm "napping." Markus and Miriam have taken San and Laz to nearby Liberty Park for a walk (that's a bike ride for Miriam). Tomorrow we take the show to the schools. Miriam's preschool will welcome San and Laz in the morning. Then we'll head to Uintah Elementary. The second-graders (Simon's classmates) have been practicing songs to sing along with Gemini at the end of the concert. Joni Wilson, a choreographer from Virginia Tanner Creative Dance, has pulled together a group of 15 dancers who are also Uintah students. They will perform a dance to the song, "All the World is a Rainbow". It will be another busy day, but it will be fun, I know. We'll end the day with a chance for San and Laz to autograph CDs and songbooks at The King's English Bookshop. As many people said today, Simon would have loved these activities. It's amazing to take in the fact that these terrific musicians have entered our special spaces here and filled them with their music and spirit, all in honor of Simon. What a huge gift it is. A big thank you to all the organizers of these events, to all the contributors to Simon's Memorial Fund, and to San and Laz! Since Simon is not here to comment now, I have pulled a few references from older SIMON SAYS pages to share with our audiences here.
"Everybody's heart is filled with music."
--Simon Vodosek
* * * * * * * * * * * * * * * * * * * * * * * * * *December 29, 2001 Three days after his diagnosis with neuroblastoma.
Simon was a big fan of Gemini. San and Laz Slomovits reached out to him by playing right in his hospital room and by giving him many wonderful CDs of their music. Three months into treatment for cancer, Simon (age four at the time) had a jolly moment when he grabbed his feet and sang with charm and enthusiasm:
"Hello, hello, hello! Hi, hi, hi! . . .
I'm pretending my foots are San and Laz!"
--Simon Vodosek, March 26, 2002
* * * * * * * * * * * * * * * * * * * * * * * * * *
We miss you, Simon!!
November 9, 2004 "A Cloudy Time"Although I often think of things to say (you know, the way you write some letters in your head but never get them down on paper), I find I am writing less and less. So many factors contribute to my slowness.On November 6, we felt the passing of the third month since Simon died. We had the company of Ann/Grann and Norm/Grandad for an extended weekend, and we were able to feel this time milestone together. It is not getting easier. The blustery fall weather adds drear. The natural novacaine of self-protection begins to wear off. Trudge as we may, we do not move away from the terrible fact that Simon is gone. Having family visit for the first time since Simon's memorial service probably jumped us further along the path of getting our heads around our loss. We lit a lot of candles together. We spoke often of Simon. We watched a home video shot September 2001-October 2002. It reminded us of the carefree days of Simon with floppy hair and no idea of life-threatening disease. And it took us through the time of his diagnosis (a quiet Christmas of 2001) to his Make-a-Wish party during his recovery from stem cell transplant. Oh my, what a pile of Playmobil boxes that was! Sometimes I have wondered if we guided Simon toward the "right" wish for him. Looking back at him receiving all those boxes and beginning to build the different items together, I think we did help him make the right wish for that time in his life. We continue to receive a lot of commentary for our ability to "keep going". Saturday evening we went with my mom and dad to see "Carmen" as performed by Ballet West. A shop clerk from a nearby store was there selling ballet trinkets in the lobby. We chatted, and she expressed her admiration and amazement that we were out at the theater, despite our very recent loss. It's true that time seems somehow on hold and we don't experience daily life with our full faculties most of the time. So, we might as well be at the ballet, don't you think? Another reason I am updating the site less at this point is that I am working hard on preparations for the Gemini events this weekend! San and Laz Slomovits arrive in Utah on Friday evening, November 12. We have a jam-packed schedule with them until they leave on Tuesday, November 16. Please see the Memorial Activities page for the full scoop (it includes the schedule and downloadable flyer and press release). We are also excited to be in the preliminary phases of planning for a tribute with Gemini and other Ann Arbor artists to celebrate Simon's birthday in May 2005. This fabulous idea of an Ann Arbor tribute was generated by our friend Whitley Setrakian and Gemini. We jumped right on it and said we'd love to schedule it at a meaningful time when we can attend. We'll let you know the details as we get it worked out. Miriam has a cough and a low-grade fever. Please cross your fingers for us that she gets over being sick so she can have a great time this weekend with San and Laz! I really appreciate the current batch of messages on the MESSAGE BOARD. It feels good to hear the echo of my voice as it changes and draws strength from the loving words you send back to me.
Simon's story, and that of our family as we live on without him, appears on this Web site in reverse chronological order. Anyone who wants to see the whole story can scroll down to the bottom of this archive and start there. We have listed the treatments that Simon underwent in the short summaries for each archive link in case other families facing neuroblastoma want to take a look at Simon's experience as a point of reference.
2006
The second half of 2005 has come and gone. We hit the one year point since Simon's death on August 6th. We celebrated Simon's memory with a concert by the terrific group Two of a Kind at Utah's Hogle Zoo. Miriam has started kindergarten, Markus continues to work hard as an assistant professor, and Mary is doing a little teaching (voice and German) and pursuing her interest in writing.
Miriam finishes preschool. We celebrate Simon's birthday on May 17, 2005 with an outpouring of community love and support during a Lemonade Stand in Simon's memory. We travel to Oberlin for Mary's 20th college reunion and on to Ann Arbor to hold a second memorial service for Simon on June 3rd. Mary attends a writers' workshop in Salt Lake City.
Acts of mourning continue as life also moves forward. Mary travels to Denver and meets the bereaved family of Becca Lockler.
The pace slows. We reach six months since Simon died, then seven. Mary and Miriam travel to Ann Arbor for the first time since Simon died.
Working through grief; working on life; trying a few new things.
Approaching "the holidays" without Simon and marking time with the moon.
Our fourth month without our dear Simon included a busy and rewarding celebration of Simon's legacy with the music duo, Gemini.
Life without Simon crawls along. Memorial tributes of all kinds are underway, from Simon's Memorial Fund to friends and family holding events in Simon's honor.
Life without Simon creeps along.
Simon died on Friday, August 6. We held his memorial service on August 28, and we established the Simon Craig Vodosek Memorial Fund to honor his beautiful spirit.
The month began with Simon's wonderful Celebration of Life Party. As his disease progressed, he slowed down more and more, but he hung in there for the whole month.
A wonderful end of Simon's first-grade year (June 4) leads quickly into a rapid progression of disease with increasing pain and weakness. Our focus is on pain control and other comfort measures to allow Simon to enjoy his remaining time.
Recovery from radiation side effects and enjoying good energy to get back to school. Second course of temazolomide/irinotecan. Simon turned 7 on May 17!
CEP-701 trial abandoned after 4 weeks because of further progression; begin palliative treatments to ease symptoms of jaw tumor and general disease, including radiation and chemo with temazolomide/irinotecan.
Chemo abandoned after further progression; begin CEP-701 phase I clinical trial at UCSF
More chemo (round 2 topotecan/cytoxan)
Disease progression (widespread in skeleton) discovered during work-up at Memorial Sloan Kettering Cancer Center; begin salvage chemo with topotecan/cytoxan
Begin accutane (vitamin A derrivative to fight neuroblastoma); consultation with Dr. Kate Matthay at UCSF
ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
Irinotecan/vincristine at home
ITP chaos
Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
Irinotecan/vincristine in the treat then evaluate mode
Still recovering from MIBG therapy
Finally starting kindergarten!
MIBG therapy
Recovering from transplant
Stem cell transplant
Surgery
Several months of topotecan/cytoxan in the treat, scan, evaluate mode
Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
Stem cell harvest (to be purged)
Diagnosis and starting treatment
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