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WHAT'S HAPPENING Archive January 2005January 23, 2005 "Another Week, Another Sunday"We are experiencing one of the big drawbacks of the Salt Lake Valley in winter: temperature inversions. The air in the valley gets trapped, with the temperature of the air not decreasing normally the further it gets from the earth. So, our air isn't moving around under normal patterns, and smog, fog, and general ick get trapped in our city. The same thing happens in the summer, keeping a layer of nasty, hot air too close for comfort. Generally, a rain or snow storm clears the situation.Markus and Miriam have done what the locals do to escape the inversion: they went up to Brighton Ski Resort for the day. I am still working my way up to more skiing (and all its hassles, like renting all that awkward equipment), so I stayed behind. Instead, I have spent a grey day indoors, first at church and later at home and on the computer. I have added another clip to the MEMORIES IN AUDIO AND VIDEO paged. This clip shows Simon and Miriam, along with their cousin Claudia Craig, at Thanksgiving in 2001. We were all visiting in Oberlin. Although we did not know it then, Simon's body was already growing his cancer. By November of that year, we had already taken him to an orthopedist because of his occasional limp and hip pain. About a week after Thanksgiving, he had a stretch of bad pain in his left leg, which woke him at night and required steady use of motrin. That Monday (December 3, 2001), I took him to the emergency room, and he was admitted for observation over night. The diagnosis was long and arduous. Juvenile arthritis, bone infection, leukemia and other possibilities were considered. We went from bone scan to orthopedist to MRI to oncologists back to orthopedists back to oncologists. Oh, I recall our horror the first time we had to sign consent forms for Simon to have a bone scan under anesthesia. Looking back, how many times did we end up consenting to anesthesia? Simon soon learned to lie still for his scans, but he continued to receive anesthesia for every bone marrow aspirate/biopsy performed. My stomach ties itself in knots thinking back over this terrain. Just as Simon's life became inextricably intertwined with his cancer treatments, these video clips show us delightful memories of the bubbly, happy, loving, funny Simon, even as they remind us of the many things he endured after cancer entered his life. I am working to improve my video-editing abilities. I have recently discovered how to eliminate the black side borders on the footage I had imported from analog 8mm tapes (I use a crop/zoom plug-in to clip off the outermost edge of the video). I am experimenting more with effects and transitions, too. Can you tell what I tried on this clip? As always, I appreciate your feedback and input on the clips. I especially want to know if you are having any difficulty accessing them.
January 15, 2005 "Some Thoughts on Procrastination"I guess we all know the experience of putting something off, even as your conscience nags you to address the task. I've never been immune to procrastination, and it certainly appears in my life since Simon died. I am noticing the effect of grief on my willingness (or lack thereof) to do certain things.I continue to confront a few lingering insurance claims and medical bills, although generally without eagerness. Once I do settle into the task, I find I'm reliving memories. The memories are often sad, taking me back to difficult times in the hospital. As I encounter the sadness, I find my procrastination has been caused by a desire to avoid the pain. I imagine most procrastination is like that, except that it's not usually so clear where the grief is coming from. On Thursday, I took Miriam to the dentist. It was her second appointment here in Salt Lake City. The last one had been in early July. I found myself putting off our departure for this appointment, getting sidetracked on cleaning tasks in the house. When we finally got on the road, I could see we were going to be a good 15 minutes late. The nearer we got to the dentist's office, the more vividly I began to remember July and the sad circumstances around our previous visit. Today, I went back to the archives of a listserv for Neuroblastoma parents and families to find a message I had posted there in July, describing the awful time when I knew for certain that Simon would never keep his dental appointment.
So, I guess what I'm noticing about procrastination is that it probably comes from a fear of some kind of pain. We don't usually have something as tragic as the loss of a child fueling our avoidance. Still, I think we can give ourselves gentle forgiveness for skirting our tasks and remain open to learning what grief may lie behind our lack of willingness to proceed. *Ellen is a listserv friend who has been through multiple traumas in the last year, and she has described herself as staying frozen as she tries to move on despite all the loss. Thankfully, her little one with neuroblastoma (a triplet!) is doing well.
January 9, 2005 "So Many Memories"I continue to work with video footage we took during Simon's life. It's a sporadic record, peppered with priceless moments. It's amazing to see the same personality we knew so well in the 7-year-old Simon back in his baby days.Tonight I have added one Video Memory of Simon and Miriam in April 2000. Simon is almost 3, and Miriam is 7 months old. I remember how Simon used to pull all the strings on his wind-up music toys and listen to the dissonant blend of their tunes. I am wondering if folks are able to access and enjoy the video clips. I'm creating them in iMovie and saving them as QuickTime files. I hope they are compatible with your browsers. Let me know if you're accessing them OK on the Simon's Place MESSAGE BOARD. If you're having trouble, let me know that, too!
January 6, 2005 "Keepin' On"The new year brings so much with it, and it reinvigorates our sense of the year that has passed. It invites thoughts of "a year ago, we were doing . . ." For us, a year ago we were readying for Mary and Simon to travel to New York for tests and consultation about further anti-cancer therapies. We were hopeful, given Simon's good energy and recent declaration of "minimal residual disease". On January 14, 2004 Dr. Kushner gave the reports that, at the time and in hindsight, seemed to be the faint beginning of the death knell for Simon.Today marks five months since Simon died. I share a feeling with other bereaved parents of wondering how five months could seem like such an eternity and yet feel like a time filled with almost nothing at all. The snow is piling up outside, as it did last year, although so far we've had a lot less shoveling this time around. The ski resorts are having a banner year. And we carry on with our lives here, remaining feisty enough to launch commentary at the local newspapers. Our newly elected governor was inaugurated on Monday. I took offense at some of what I heard as I listened to the proceedings on the radio. The Trib has honored my sentiment by printing the letter in today's paper: Mary's Letter to the Salt Lake Tribune
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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