|
|
          |
WHAT'S HAPPENING Archive September 2004September 28-29, 2004 "Returning to Primary Children's Hospital"Miriam and I (Mary) entered Primary Children's again today for the first time since early July, when Simon was last seen as a patient. Of course it is a place of many memories for us. Our purpose this evening was to join bereavement groups. Miriam is in a group of 6-12 year olds (they said she could join as a 5 year old). I am in a group of bereaved adults (mostly parents, although we have one recently widowed dad).Miriam's group made fun name tags and had a therapy dog named Maize. It seemed way more fun than the adult group. Even with a certain amount of separation anxiety, she could see that she would rather be in the fun room than up around the massive board room table with a dozen somber-looking grown-ups. I learned after her session that a number of kids were there after losing a parent. She also met kids who have lost a brother or sister. They even had a snack. The grown-up room was more sedentary. We sat around the enormous table, sipped water, and shared our stories of loss. One other mother lost a teenager to liver cancer. Two families had severely disabled children (one a 6-year-old boy, one a 14-year-old girl) who each died somewhat unexpectedly, although their fragility had always been a health concern. One couple had lost a 10-day-old son to an irreparable heart defect. One couple had lost a 21-month old daughter when a departing visitor's vehicle hit the child. And there was the dad who had recently lost his wife to cancer. The adult group is led by a hospital social worker and will continue to meet for the next 5 weeks, as will the children's group. Miriam did very well in her group, and she has seemed relieved to know that other kids have had a loss like hers. She said, "There were more moms and dads", meaning that many of the kids had lost a parent. But there were several who had lost a sibling. When we got home, we found Markus reading at the table, sitting next to the Simon candle, which he had lit. Miriam and I also lit small tapers. We sat and talked. Miriam wanted to play "Hoppe, hoppe, Reiter" (the German equivalent of "Trot, trot to Boston"). She laughed heartily. I think she was feeling pretty good. Here's what our altar at home looks like, followed by an image from the memorial service:
* * * * * * * * * * * * Now it's Wednesday morning. After entering the hospital yesterday evening, I reentered this morning to pick up a prescription for myself at the pharmacy there. I saw one of Simon's nurses, his hands full of ziplock bags with syringes marked "hazardous" (i.e., chemo), who greeted me quickly and walked by. I was a little disappointed that he didn't linger a little longer. After all, it was the first time I'd seen him since Simon's death. Of course, he promptly turned around and said, "What are you doing here?" We chatted a bit. I told him about joining the bereavement group. He made a comment about never having time to process the losses himself, just having to move on to the next new diagnosis. Ouch. Yes, there are support services available, but staff rarely have the energy or time to take advantage. Simon is not the only fabulous little kid that they have had to say farewell to, and move on. I stuck my head into the oncology clinic. The reception staff were friendly and unsurprised when my answer to their "How are you doing?" was a tearful "Sad." I spoke with a few more of the very familiar members of the oncology team in the hallway. Lots of hugs and supportive vibes. One doctor honored me with the comment that Simon's obituary was a "poem." They were all so gracious to take time to linger with me in the hall, and I know how many tiny details they have to chase down and keep track of all day. I hope to post an update soon on our progress with Simon's Memorial Fund and further plans for Gemini events in November here in Salt Lake City. We were happy to have a visit Monday evening from Jamie Hine, an Ann Arbor friend with strong ties to Mary's work with Arts at Michigan. Jamie is now a lawyer at the Federal Trade Commission in Washington, D.C. He was out in Salt Lake City on business for the government. Jamie said he was concerned about "bothering" us. To the contrary, we are always pleased to see friends and share our lives, even (especially?) in a time of sadness and change. I hope Jamie will forgive me for quoting him here:
We hope Jamie and his girlfriend, Carla, will come again for a visit. And we hope others of you will think of us as a travel destination, too.
September 23, 2004 "Blue Sky Again"We had that super-blue Utah sky again today, although the temperatures remain a bit below normal for this time of year. Fall is clearly on its way. We even have a fresh dusting of snow on the mountain peaks. I don't know about the rest of you, but this September has seemed to crawl at a snail's pace. I'm used to archiving the current month's pages for this Web site before I know it. This month, I have a feeling more like, "Is it really still only the 23rd?"On Tuesday evening, we were happy to visit with the family of Ellen Williams, who sat across from Simon at the same table during first grade. Ellen's mom, Sarah, sang and played the guitar beautifully at our graveside service for Simon. She and Ellen also came to play for Simon a few days before he died. Ellen's dad, Tyler, and brother, another Simon (8), and sister, Charlotte (4), also joined us for the dinner/playdate. We all honored Simon by relighting our "Simon candle" from his memorial service, and each of us lit a small candle to remember Simon. It's becoming our new tradition, lighting these remembrance candles with friends. I find it helps us all feel connected and more relaxed about how to be together, even when we all feel the strangeness of Simon's absence. Miriam's birthday dinner on Monday evening at the Old Spaghetti Factory was also a pleasant time. It seemed to me that the Monday evening staff had no overlap with the crew we saw on the pair of Saturday evenings that we went there with Simon in July. That helped a bit to distract emotional focus from the sadness of not having Simon with us. Miriam was happy with her choice of celebration, and of course we stopped at the Rocky Mountain Candy place for an extra treat on the way home. On Sunday after church, I stopped by Simon's grave. Mt. Olivet Cemetery is so close to our church that it's nearly impossible to go there without a quick detour to Simon's spot. We had been having heavy winds and rain, and I found a bunch of fallen twigs from the gracious weeping beech tree that shades Simon's grave. I collected twigs in a bit of an autumn dance. At home, I wound the twigs into a wreath, and we're enjoying it on the wall. It is intriguing to see the way I want to work with the natural materials of the place (pine cones, etc.) to adorn the grave. We have not yet chosen a grave marker, so for now the grave is marked by a gentle blanket of these lovely black-red, feathery twigs. This evening we had a family movie night at Miriam's instigation. We watched "Mary Poppins". I realized that this was our first family movie night since Simon died. No wonder I was fidgety and busy with ironing and mending, in and out of the room. (Miriam and I had watched the same film about a week ago, so it was pretty fresh in my mind.) We continue to be impressed with her ability to watch a long performance and stay fully engaged. We note wistfully that Simon would never have chosen to watch such a long, "boring" movie filled with "real people" instead of full animation. Our remaining family trio will continue to exploit this newfound (if shallow) sense of freedom to enjoy cultural activities that may not have been Simon's style. Tomorrow evening, we are headed to a Fall Festival evening of dance put on by Ballet West. We are grateful to the wonderful Jonas Kåge, church friend and artistic director of the Ballet, for his warm outreach to us. There remain many pieces that I intend to add to this site--more tributes to Simon of various kinds, more photos and text from Simon's Memorial Service. In part, the size of these tasks keeps them longer in coming. However, the real slow-down is probably the subtle internal resistance that makes it so very hard to face tasks which remind me that Simon is gone.
September 19, 2004 "A Wet September"Uncharacteristically for Utah (especially in contrast to last year), we're having a lot of rain. Perhaps the skies are raining down sorrow upon us, as we periodically shed our tears over Simon. Mourning is an unpredictable and unplannable process. Each of us has moods and moments that call up the pain of loss. It is rarely in synch with anything or anyone else. We offer each other comfort as we can, and we offer ourselves absolution of any judgment that we might be mourning "wrong" if we are caught in a numb or otherwise inaccessible place when the other is dissolving in sadness.We smile. We laugh. We play games (tonight was Uno at bedtime). We go to church. We go about our fall routines. We eat. We socialize. We read. We rest. We are prepared for Miriam's birthday tomorrow. She is turning five! At her current level of sophistication, it's hardly a shock to note the number of her years. She is eager to celebrate in ways reminiscent of Simon's recent parties. I have already laid out the treasure hunt for hidden presents in the morning. We had so much fun doing that on Simon's birthday in May, with my parents on hand to help distribute the gifts and clues. Miriam's birthday may feel to us like the first family celebration without Simon. We will have to see how we handle it. Miriam has asked to go out for dinner to the Old Spaghetti Factory at Trolley Square. We haven't been there since July 24, when we had dinner out with Sally Olson. That was Simon's last time out of the house. Wanting to honor Miriam's wishes, and knowing deep down that the best way forward is *through* the depths of our pain, not around or deflected off it, we will head there tomorrow evening. For those who may have missed recent postings about Simon's Memorial Fund, do take a look at the information on the LEGACY page for links to updates about the Simon Craig Vodosek Memorial Fund. Plans are going well for the upcoming residency of Gemini in Salt Lake City in November. We have also added information on ways to contribute to Simon's Fund via wire or credit card (especially for those outside the USA).
September 6, 2004 "One Month"We note this Labor Day that Simon died exactly one month ago today. It remains almost impossible to describe the range of emotions and physical feelings that accompany us through our days now. I think it's really too early for us to try to talk much about our grief and our mourning of Simon's passing.Clearly, the need for running commentary of our lives, and most particularly Simon's life, in this section of the site is changing. We know that many of you are out there, still checking on us, still trying to comprehend for yourselves that we have all lost Simon. So much in the habit of writing our story for a caring community, I continue to feel the urge to write. So, we shall see how this part of the page continues to exist. I saw this evening that my last posting here was on August 18. Of course, I have built other sections in the meantime, especially those about Simon's Memorial Fund and the service we held on August 28. I still have a lot to share about the service, and I hope to get around to writing about it and posting photos soon. It was an incredible weekend. Meanwhile, Markus, Miriam, and I have been working our way into a new school year. Markus began teaching on August 25. Miriam attended an orientation at the Virginia Tanner Fine Arts Preschool on August 30. She starts school, three mornings a week, on Wednesday, September 8. We have been taking advantage of the natural splendor of Utah, and we spent Sunday, August 29 on a hike to Cecret Lake with our remaining out-of-town family: Ann and Norm Craig, Julie Lautens and Ralph, and Annette, Steve, and Rowan Williams. After the hike, we went out for dinner at a Salt Lake City brewpub called Squatters. Miriam and Rowan (7) seemed to enjoy each other's company, and I felt we were beginning to learn how to parent a solo child in the company of Steve and Annette, who do so well with Rowan. From September 1-5, Markus, Miriam and I ventured forth on our first trip as a threesome. We headed south for the first time, having been very limited over the past year in our travel radius with Simon's illness. We spent three nights in a pleasant bed and breakfast inn in Torrey, Utah called Skyridge Inn. From there, we had access to Capitol Reef National Park, where we enjoyed the unusual mix of dramatic, colorful rock formations and cliffs; petroglyphs from the Fremont Culture (Native American); and a well-irrigated river bed that still bears fruit from trees planted by Mormom settlers in the 19th century. So, you can hike around, pick a few apples or peaches, and marvel at the colorful layers of the rock, an in-your-face look at millions of years of geology. After two days in Capitol Reef National Park, we drove along scenic highway 12 toward Bryce Canyon. We visited an Anasazi Village archeological site, and we took a gentle hike through the Escalante State Park Petrified Forest. After a night at a bed and breakfast in Tropic, just east of Bryce Canyon, we spent Sunday in Bryce Canyon National Park (along with the biggest single-day crowd in the park all summer!). Miriam was an impressive hiker (most of the time), and we reveled in our descent through the strange and beautiful pinnacles of the Navajo Loop and the gradual climb back up through the Queen's Garden Trail. It was a joy for us to learn first-hand that these incredible destinations are only a 4-hour drive from home. During our travels, we felt Simon in the blue of the sky, on the wings of the dragonflies and the birds, and, as always, in our hearts. We think he would have been especially thrilled on the hike into Bryce Canyon. We also acknowledge that the three of us have gone into new territory, where we never actually went with Simon. We're grateful to recall last October's visit to Yellowstone as a foursome, and we know that a return trip there will likely bring our heartache closer to the surface. For now, exploration of the new helps us stretch ourselves and also helps to root us in our emerging future without our beloved Simon as our very influential companion.
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
|
 |
