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WHAT'S HAPPENING Archive October 2004October 18, 2004 "Has it really been 11 days since my last update?"Hmm, I thought I had written more recently, but I guess that was my postings about recent tributes to Simon by the University of Michigan Business School and by the Palestrina Choir at the Pro-Cathedral in Dublin, under the baton of Blán Murphy. If you missed those, take a gander at the SIMON'S LEGACY page and pop down to the "Tributes". Both our friends at the B-School and Blán have promised updates on how their events went.What have we been up to? More stuff, I'd say. It seems we remain in a mode of stretching our wings a bit and trying to incorporate activities that were not possible during the more intense periods of Simon's illness. For example, Markus has just done two stints as a phone volunteer for the fund drive at our local NPR station, KCPW. Earlier in October, I began taking a 10-week course called "Anatomy for Yoga." Who knew that the University of Utah, and its medical school, have one of the most active anatomy programs in the country? Our instructor is a student (possibly still pre-med, maybe now in med school, and delightfully youthful and passionate about anatomy). I have now experienced the first three weeks, in which we have learned about basic types of tissue in the body and today began covering the skeleton. Readers of this site may know that I've been doing yoga for several years now, so it's probably no surprise that I'm interested in going deeper into the subject. What I had not anticipated, though, is how much this class reminds me of Simon and our medical odyssey. From my years of reading his medical reports and talking to the doctors, I learned a lot of anatomy! It is both tender and harsh to recall the pains and stresses on his body as I revisit the names of the skull bones where he had tumors (frontal, pariental, mandible) or the limbs (humerus, femur) or the spine, sternum, pelvis. I have even learned to name the "coronal suture", the fibrous joint between the frontal and pariental skull bones. This is the joint that split open a full centimeter in Simon's skull as disease filled his cranial cavity. Our medical team was impressed to see this change, believing it must have been very painful. I did not observe that opening to cause specific pain, although it certainly may have. It seemed to occur gradually over several months. All in all, I thought it was a pretty helpful response to the mounting pressure in his head. I guess you can imagine the mixed feelings that accompany this deepening of my knowledge about the human body, and about Simon's physical experience. The intellectual stimulation feels good. And, honestly, I am greedy for anything that reminds me of Simon, even if parts of the memory are sad or full of cruel reality. Miriam continues in her various activities. Her life focuses on preschool at the Virginia Tanner Fine Arts Preschool. She has grown more comfortable with her new teacher, Miss Tad, and her new classmates. She seems wonderfully stimulated there. Still, she struggles with a new sense of separation anxiety. She is unwilling to be dropped in the quick drop-off line at school, a routine that she kept easily last year. I enjoy my chances to go in with her and observe, but I still yearn to feel that she is more secure and that I, therefore, have more time to myself. Aside from yoga, anatomy, and the ongoing bereavement group on Tuesdays, I am busy with music at the First Unitarian Church. One big music project at the church is the upcoming residency of Gemini, November 13-15. This project combines our work on Simon's Memorial Fund with ongoing work to establish a visiting artists program at the church. The details (and there are many) are falling into place. It is a joy to work with San and Laz at a distance and with local partners at the church, at Uintah Elementary, and at Miriam's preschool. For more on the Gemini project, wander over to the Memorial Fund Activities page. As far as I can tell, we have reached our current maximum, in terms of how much we can do in a day and how tired we get. For my part, I am grateful to Keri Anderson and her children for entertaining Miriam all afternoon. I had a long and much needed nap.
October 7, 2004 "Wednesday was Two Months"There was a heavy feeling for us yesterday (Wednesday), knowing that two full months have gone by since Simon died. The quality of time and its passage seems quite altered for me. Has it gone slowly? Has it gone fast? Has it gone by at all?I was blessed yesterday by an out-of-the-blue hug and visit from my new musician-friend Elizabeth Ballantyne (she's the one I do art songs with every week). She just stopped by, knowing that it was 2 months. She gave me a hug, a strong look of caring right into my eyes, and an acknowledgment that she knows what it's like the HAVE a son Simon's age. It was a very sweet and wonderful gesture. And it evolved. Her sons, Daniel and David, grew tired of waiting in the car and came up to the house. We went to the backyard to look at Simon's pumpkin plant (yes, the one planted at school last spring). Before we knew it, the kids were uncovering the sandbox. And then Elizabeth stayed with Miriam and her boys so I could go inside for a NAP. What a gift. We have had other ways to process our feelings come our way. On Saturday evening, we were treated to a wonderful meal at the home of Martha Ertman and her 6-month-old son, Oscar. Martha's partner, Catherine, and her Law School colleague Erica were also there. We found common ground of loss because Erica's mother, whose life had long been plagued by cancer and treatment, died in January. Our evening ranged from silliness with Oscar (raspberries on the belly, playing airplane--it's so fun to play with a baby!) to tearful recollections around the table of Simon, his illness, his memorial service, our sense of loss. Martha and Catherine asked deeply caring and probing questions. I wish I could remember what they were. I think we all felt very engaged in the conversation and also helped by it. With the exception, perhaps, of Miriam. After Oscar went to sleep, she may have been bored with all the grown-ups. She played some with Katie and Ginger, the dogs. Miriam and I went to week 2 of our bereavement groups on Tuesday at Primary Children's. She continues to do well in her group, and I think it's helping her. In the adult group, we had been asked to bring photos and share about our children who had died. I had plenty to show, and once I got started talking about Simon, I thought I would never stop. As it turns out, I am the only parent in the group with a Web community cloaked around me. There are two other cancer families, but neither mentioned using a Web site. The rest faced more unexpected losses. Contrary to my sense of things from my own little world, I see that children do not always die of cancer--many other things can befall a child. And not everyone has had so much of the odyssey of their loss in the company of their ailing child or in the company of so many supportive witnesses to the process. The virtue of group therapy is that it can help us see our own slice of reality with more clarity. Yesterday evening also turned out to be a chance for me to let the pain gush out a bit. I joined a group from the First Unitarian choir to hear the all-male 12-voice a cappella group Chanticleer at the enormous and resonant Cathedral of the Madeleine in downtown Salt Lake City. It was a gorgeous performance. And it became a very moving experience when the group presented 5 very sad songs (3 by Monteverdi, one each by British composers Pearsall and Tavener). The songs all dealt with the pain and sadness of mourning a death. The music was pure, intense, raw. I sat in my pew and wept (silently). I sat with no tissue, until a gallant choir friend gave me a stack. When the applause finally broke forth, I was able to sob out some of my sadness. I am grateful for all the ways I am finding to crack open the tin can that seems to surround my grief and pain. Sometimes it releases. Sometimes it builds. I only know that I am not in charge of when it can move.
October 2, 2004 "Our First October without Simon"First of all, please pop down to the September 2004 archive for my entry of September 28-29, 2004. I forgot to make a link from the "Recent Updates" box on the main page to alert readers it was there. So, you may have missed it. It was longer than this one, and probably more interesting . . .Today's updates to Simon's Place include the latest on Simon's Memorial Fund. I "retired" a recently created page called "Simon's Fund News" (how many of you noticed *that*?). Instead, I'll be updating the main Memorial Fund page and the Memorial Fund Activities page. That ought to be enough places to look, I think. We are excited to watch the amount in Simon's Fund creep up slowly. We appreciate all contributions so much. We know that working toward the first activity, the residency of Gemini in November, is extremely helpful for all of us. We would not be able to engage in these wonderful commemorative activities without the support of so many people who loved Simon.
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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