WHAT'S HAPPENING ARCHIVE MAY-JUNE 2005
June 24, 2005 "A Writer at Work"I hope I haven't permanently ruined my ability to sit down and type a free-flowing page as an update to Simon's Place. I've spent the week as a student in a workshop on creative non-fiction writing. It's part of the Writers@Work conference, so conveniently held a 5-block walk from our house on the campus of Westminster College.
Our instructor is Brenda Miller, who among other things is Editor-in-Chief of the Bellingham Review literary magazine. Our group of fifteen writers is a lively, talkative bunch, eager to write and share and tussle over ideas of good writing.
The group has also been open to experiment, and Brenda has developed a new technique with us and dubbed it the "Ikebana Workshop". She pulled the idea from the critique format in a course she took on Japanese flower arranging. In the Ikebana class, she and her classmates took on a specific assignment using the same basic elements. After a period of arranging they all stopped and spoke together about the process and the products and the glorious differences in their outcomes with the same materials.
Brenda has given us several short writing assignments this week, and many have used essays by published authors as material for imitation. For example, we read the Joan Didion essay, "Goodbye to All That" and were assigned to imitate as closely as possible the original syntax of the following sentence:
On the first day of class, we each shared our expectations of the 5-day workshop. We were asked to say what we felt we would give and what we wanted to take away. I heard some classmates express the hope that they might receive helpful critique and not need to cry about it. I told them I was sure to bring tears to the week and that I hoped I might give others the sense that tears are just fine. What I hoped to get from the workshop was direction for my writing about Simon.
For our final assignment, we are writing 2-3 page essays or essay-starts. Most are based on in-class assignments of writing from memory. Some are taken from the imitation exercises. Some are pieces people have been working on previously. The "Ikebana Workshop" involves reading your piece for about 5 minutes to the class and then taking comments from the class for about 15 minutes.
My turn is tomorrow. I am working with an essay that began as an assigned imitation of Bernard Cooper's essay "The Fine Art of Sighing."
My essay has become "The Fine Art of Eating Grapefruit", and it attempts to follow the basic shape of Cooper's original in terms of the number of paragraphs, the family references, and the point at which it becomes serious. Meanwhile, I have all these epic Joan Didion sentences running through my blood, and I am finding a lot of unfamiliar style pouring forth onto the page.
Whether the essay I will share in class tomorrow is one I can keep working, or I need to give in and take a completely different approach to my subject, I don't care. I have learned what I came to learn. I have figured out, I think, what it means to be a writer and what it will mean to try to write from my material and my memories of Simon.
I have found a subject, a rich little mine filled with low-grade ore and the occasional twinkling gem. I am digging all of it out, but I can see it will take time. I knew I could write about grapefruit and also make the writing be about Simon because grapefruit is a long and colorful family tradition, and Simon was a joyful grapefruit eater. I have many more ideas than I can fit into this essay on such a short turn-around, but I'm intrigued. I can talk about color theory. I can talk about the way I've seen the fibrous juice sacs emerge more or less the same in a diaper or floating in the toilet bowl of my morning sickness. I can talk about the silver spoons from Granny and Gramp that we use to scoop out the fruit. I can ponder the shape of the fruit, the divisions between the sections, the juiciness, the sour. I could wander off into other citrus fruits. I could probably end up with lemons and Lemonade Stands. I think you get the picture.
As I have tinkered with my prose (and Cooper's shape), I have begun a natural, but very time-consuming, process. I have searched the Internet for information and vocabulary about the anatomy of citrus fruits. I have searched through SIMON SAYS for references to grapefruit by Simon. (The only one I found was on the July 2002 page, dated July 19, 2002 "Restless at 5:30 am".) I have dug out photos of Simon eating grapefruit. I have called my mother to interview her for recollections. She's the one who remembered that Simon used to pick up the whole fruit and just pour the juice into his mouth when he was done scooping sections.
Eureka. That was the discovery I needed to make this week. With my topic in hand (and it's probably not going to be grapefruit for too much longer), I can go back and search my old writings, review our photographs more single-mindedly, interview people, study Simon's things. I need to do all of these things to keep Simon's presence strong with me. But I need to do them without drowning.
As for the tears I promised to share in my workshop this week, I've found the weeping has taken place mostly outside the classroom. And it has taken place. On Wednesday I dared to read two short excerpts from this Web site at an open-mic session. The first was part of my Chronicle of a Surgery" in the TREATMENT section. The second was part of my April 3, 2005 entry from the WHAT'S HAPPENING archive in which I describe setting the antique clock to hold the time of Simon's death.
I was glad I chose to read, but I was not able to do so with the full voice and refined performance skills I can usually bring to my public appearances. It's all still so raw. I got through both excerpts, but barely. I wonder when it will be that I can stand in front of a roomful of people and tell Simon's story and have my voice be strong and clear. I know I did it at his memorial service last August. I just don't know how.
I haven't forgotten about the need to share about our time in Ann Arbor, truly. I will tell.
June 16, 2005 "Getting Back in the Swing"Wow, another whole month since I last wrote on this site. We have had a busy time, to be sure, but I wonder what else is making it harder to sit down and write and reflect? I actually began an entry on June 8, the day Miriam and I returned from our two-week journey "back east" (as we say here "out west"), but I didn't get past the title line. I know many of you have been checking the site in hopes of reports on our memorial service in Ann Arbor. There is so much to tell, and I'll try to get to all of it eventually.
Next week, I am attending a non-fiction writers' workshop here in Salt Lake City. It is part of the annual conference held by a local non-profit called Writers@Work. This opportunity seems to come at a time when my writing output (this Web site, my journals, my email list participation) has dwindled to almost nothing. Hmm. I wonder what that's about, too.
One thing I can say for certain is that we are now in a very different memory space. Seasons of the year and specific dates have a way of drawing up memories and inviting reflection on what was happening at this time last year (or even further back than that). Up until June, my memories of Simon's last year took me back to times that were mostly happy and fun-filled, with brief medical diversions and challenges along the way. Now, we have entered the memory space where the things that happened exactly one year ago are increasingly harsh and sad.
One year ago on June 12, 2004 I had a long phone conversation with our friend Jim Olson, a pediatric oncologist in Seattle, Washington. I had asked Jim way back in January 2003 to tell me what we might see if Simon was beginning to die. At that time, I was concerned about our plan to move to Utah and how the upheaval of a cross-country move would impact our ability to care for Simon, especially if we were suddenly facing end-of-life care. What Jim told me that day was that we would see "a big change between now and a few weeks ago." The change would involve energy, appetite, and a general sense of liveliness. I tucked this piece of information away for later. Watching Simon in the ensuing 18 months, I frequently tucked it away again, knowing that I had not yet seen "the change."
But on June 12, 2004 I called Jim to say that I thought I had seen "the change." Mind you, this was just one week after Simon's fun afternoon of baseball at the June 6 church picnic (see Erik Troberg's beautiful tribute to Simon called Simon the Dragon). It was also about 10 days after medical reports revealed that Simon's cancer was growing despite the chemo he had taken in May. It was a time when we knew our defenses were crumbling against the spread of disease, and it we were definitely on alert.
If you can bear it, take a look back on last June. There are precious and telling comments on the SIMON SAYS page (scroll to the very bottom to find June 2004), happy and heartbreaking images in the PHOTO GALLERY, and reminders of great medical complexity, love, and coming to terms on the June 2004 WHAT'S HAPPENING page.
I am working on a write-up of our trip and our beautiful memorial gathering in Ann Arbor. Keep checking!
May 16, 2005 "Back in the News"Publicity about Tuesday's lemonade stand has led to a good, sensitive, and accurate article about Simon in the Desert Morning News today. I enjoyed my interactions on the phone with reporter Lois Collins. Kudos to Jennifer Hyvonnen at Liberty Heights Fresh for her media push.
May 15, 2005 "Approaching Simon's Birthday"A year ago today, we celebrated Simon's seventh birthday. Our celebrations came two days before the actual birthday (May 17th) so that we could have his party for a Saturday afternoon. I've just gone back to look at the WHAT'S HAPPENING archive for May 2004. Wow. We really had a lot going on. Now I feel rusty as I look through the medical information reported there. We truly lived and breathed Simon's care needs then. And we had a really good time celebrating his birthday.
We are doing a number of things to recognize Simon's birthday this year. We are trying to learn the language of it. Is this Simon's eighth birthday? Or the day he would have turned eight? Is he eight, or is he on a different scale altogether or no scale at all now?
For us, the hole in our lives is very real. There is no wonderful, energetic, clever little boy with us to plan his party and offer a list of birthday wishes. We are left with our memories and our feelings of being without him.
In keeping with our sense that we would rather "do than not do" rituals of mourning, we have chosen some public ways to honor Simon's birthday. As you can see from the new photo on the main page, we are holding a lemonade stand on May 17th together with a local fresh foods market called Liberty Heights Fresh. The owner, Steve Rosenberg, and his family were close to Simon. You can see a picture of Tobias and Noah with their mother Erin lighting candles at Simon's memorial service here. For further information on the lemonade stand, please see LEMONADE STANDS FOR SIMON.
We took the opportunity to remember Simon today at church by setting up a table with flowers and reminders of Simon at the front of the church. For the flower arrangement, I stuck to the brightest and the most vivid. I was especially happy to find a juicy pink peony and three magenta gerber daisies to add to the mix. On the table, you can also see the Artwarmers (tm) that Dotty Seiter sent to us in the weeks after Simon died. It was important to Miriam to bring Simon's favorite outfit along, and I added a magenta candle that we will soon be burning on our altar at home.
The format of today's church service was unusual and extraordinary. We have in our midst a mastersinger from San Francisco named Doug von Koss. I had sung with Doug and the members of our Unitarian choir on Wednesday evening and again in a small workshop on Saturday afternoon (which included singing together in the echo-y chamber of the basement in the County and City Building--our little group of seven singers sounded like eighty!). The singing is difficult to describe, but it involves very simple, often repetitive chant-like melodies. The chants are drawn from different musical, religious and cultural traditions. The singers (trained or untrained, it doesn't matter) take parts as Doug offers them, and sometimes there's free-form harmonization. Often, overtones clearly whistle around above the sung notes. At points, I began to feel that an extension of myself was singing along with me.
After the second church service, I invited Doug and a small group to walk over to the cemetery with me and Miriam. We gathered around Simon's grave and offered several chants there. It was magical and memorable to sing in that way. Doug spotted the first dragonflies of the season.
Markus has been in New York since Thursday evening, where he attended a conference and has stayed on for a couple of days of City culture. He'll be back tomorrow evening. We've missed his company and his help at times, but Miriam and I have gotten along well and kept ourselves very busy.
Here are a few more photos from our time today with Doug von Koss.
WHAT'S HAPPENING ArchiveBack to WHAT'S HAPPENING main page.
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.
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
Irinotecan/vincristine at home
Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
Still recovering from MIBG therapy
Finally starting kindergarten!
Recovering from transplant
Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
Stem cell harvest (to be purged)
Diagnosis and starting treatment