January 7, 2011 "On New Turf"
Drum roll, please
We moved! On July 28, 2010, our material belongings were loaded into a 40-foot container and sent on their way (via the Panama Canal) from Salt Lake City, Utah, to our new home in Flein, Germany. We didn't see our things again until September 13, when we began the task of retro-fitting the contents of a 2,500 square foot house into 160 square meters. (A good approximation is to multiply square meters by 100 to reach square feet. 1600 square feet is a spacious apartment, no doubt, but it's still a chunk smaller than we'd gotten used to.)
Our move happened quickly. Markus received a firm offer in May of a position at the German Graduate School of Management and Law (GGS) in Heilbronn. It was time for Markus to make a change, and he'd looked diligently for academic positions not just in the U.S. and Canada. For the second time in our lives together, he found his best option back in Germany. The first time, during the 1992 recession, he found a job in Karlsruhe, Germany, as a freshly graduated M.B.A. when the market was especially tough in the States.
Interestingly, both Karlsruhe and our new location of Flein/Heilbronn are within an hour of Markus' parents' home in Stuttgart. After 15 years back in the States, we feel lucky to have found our way to a place that's so close to family. Markus' sister, Christina, was married in October to her long-time beau, Peter Neumann. They live in Berlin, where the wedding took place. It was a great deal easier for us to travel there from Flein (via train) than it would have been from Utah! Over the holidays, we were able to travel to Austria to visit with Markus' extended family of cousins and aunts and uncles.
We have not been bereft of contact with our North American family, either. My sister, Julie, travels frequently in her work for Glaxo-Smith-Kline, and she took a hop down from London, England to visit with us in September. My parents, Ann and Norm, paid us a visit in late October as well. They can attest to the fact that (even in a semi-unpacked state) we have extra room and extra beds for visitors, and it's a lovely bit of country to explore.
In his new work life, Markus heads the M.B.A. program at GGS, and he is working to deepen the all-English culture of the school. The students are mid-career professionals, pursuing their degrees during periodic intensive courses. Markus has received a warm welcome from the school, and he's deep into teaching, administrating, and following new research leads.
Miriam is eleven, and she's a 5th-grader at the Justinus-Kerner-Gymnasium in nearby Sontheim. It's a school for grades 5-12 at which students pursue the Abitur (college prep). The German education system has recently dropped grade 13 (that's how Markus did his Abitur), and it's clearly a transitional time for the curriculum. I expect things will have settled down by the time Miriam is in the upper grades. This year she's in an "Integrationsklasse," in which a small group of students learn German as a foreign language. In addition, she has math and English. She's being slowly integrated into other subjects by joining a regular 5th grade class several hours a week. So far, that includes a "student-teacher community" hour once a week plus two hours each of sports and visual art. She'd still rather speak English (we spoke very little German as a family after Simon's illness became so difficult, and we never found a way to pick it up again--she hasn't quite forgiven us for that, but she's gamely taking on German at her own pace).
For starters, I'm at home full time. My hope and goal is to write. While I have time to dedicate to the task, I am still working on infrastructure. I miss my Salt Lake writing community very much. So far, I haven't locate an English-language writing group/community/scene. But I'm looking!! I've started a blog, and I heartily invite you to join me there: chapterthis.blogspot.com. It's been a bit fitful--I'm not sure how to approach a blog when I'm not chronicling the busy life of a family facing childhood cancer. Please visit and comment. I'd love to hear from you there! Among other attractions, the site has a slide show about my experience joining the wine harvest this fall in Flein.
I also miss my students and colleagues at the Salt Lake Arts Academy. It was a good 5-year run. I especially enjoyed the chance to teach Creative Writing. Of course I miss many friends and my Utah music buddies, and I'm happy to say that I plan to be back in Salt Lake City for the premiere of a Requiem by Dave Zabriskie, a composer living in Sandy, Utah. The performance takes place on Sunday, February 6, 2011 at the First Unitarian Church. I'll post details as soon as I have them myself.
We've left Simon's beautiful grave behind in Salt Lake City. I've wanted to write about it here on Simon's Place all these years, but I haven't quite been able to. But that's my plan, to write and post photos so that you all can see that particular commemoration of his life. Stay tuned!
November 7, 2009 "Then and Now"Today and six years ago
As a family of four--Markus, Mary, Simon, and Miriam--we attended an outdoor concert by They Might Be Giants on July 23, 2003, just two weeks after arriving in Salt Lake City. We loved it. I remember the light in Simon's eyes and the bounce in his body when the band led off with the rousing lyric "Clap your hands!" They played that song again today (as the second number in the show), and Markus, Miriam, and I rocked, swayed, and clapped from our standing-room positions at the back of the Murray Theatre this afternoon. Flansburgh and Linnell and the rest of the band keep delivering creative material that lurches about musically and startles the intellect. They have been a band for 25 years, which is about as long as I've been over 21. I enjoy the way their music makes me feel my roots in the frantic and upbeat era of punk in the 1980s.
I continue with my writing as a practitioner and now as a teacher. This fall I have taken on my first teaching assignment: one section of Creative Writing for a mixed-level class of 5th-8th graders at the Salt Lake Arts Academy. That class rounds out my part-time teaching load, which includes a 5th-8th grade German class and the Salt Lake Arts Academy Choir. I'm very busy from 8:00 am to 11:00 am, trying to remember what language to speak to my students and whether or not to ask them to write or sing! Most days, it goes great and my kids astonish me.
As a student, I am pursuing two courses this fall at the University of Utah in the English Department. My course in Methods of Teaching Language Arts helps me turn my own classroom into a laboratory for the models we are learning--and it feeds me fresh ideas to use in my teaching. The focus of the course is on methods for teaching writing at the 7th-12th grade level. The professor, Janet Kaufmann, is the mother of one of Miriam's preschool classmates. In fact, I recall her sitting near me when Gemini played a concert at the Virginia Tanner Fine Arts Preschool in November 2004 during the first residency sponsored by the Simon Craig Vodosek Memorial Fund.
The second course is called Writing Fiction, taught by PhD student Matt Kirkpatrick. We are having a lot of fun. It's an unusually fine group of writers, hunkering down over each others' fiction experiments in a 3500-level undergraduate class. Although my central topic remains my family story, and Simon's story, I am learning my way around the territory of fiction. One recent assignment was to write about an unusual item of clothing. If I had to classify this short piece, I'd call it nonfiction. Still, I took the prompt out of a fiction writing text. Comments are welcome, as always, at email@example.com.
Take a look at the homepage photo for another view of Simon's signature style (note the socks). (If the photo has changed since this posting, click on the current photo to get to the homepage photo page and scroll to From May 26, 2004 "Field Day at Uintah Elementary".
July 16, 2009 "Circuitous paths of memory"Tidying up
This afternoon, I made another go at tidying my home office, where different parts of my life vie for space: books, binders, yarn, computer equipment, art supplies, school papers (from teaching), school papers (from being a student), manuscripts, journals, photographs, posters, sewing supplies, Simon memorabilia. I've already sequestered the large bins of yarn in the basement, along with two boxes of binders tracking Simon's medical care. I'm interested in a lot of things, and I'm a keeper, not a tosser. And since I tend to move on to the next idea before tidying up after the previous one, I end up with a lot of piles shoved here and there. It's exactly the kind of mess I HATE to clean. So, I usually don't last long. SIGH.
The reward for sorting and purging, aside from better walking space, is the occasional discovery. My "stuff" has a lot of potential this way, partly because I have collections of papers that came from Ann Arbor six years ago that I still haven't touched. Markus packed up our apartment while I was away in New York with Simon in June 2003. In other words, I didn't really "move" myself then. I left one home and later greeted my same unpurged stuff in Salt Lake City. I have managed not to feel bad about abandoning Markus to pack on his own (or about procrastinating for this long on sorting through a whole bunch of things) because I was with Simon at Memorial Sloan Kettering at the time. In case you'd like to revisit our insane summer of 2003, check out the WHAT'S HAPPENING Archive especially around June 20, 2003.
One of the objects I sorted through this afternoon felt like a time capsule from late 2001, early 2002. It contained papers from my activities as an Oberlin alumna that fall. In October, I had attended the alumni weekend as the stand-in for my class president who needed to stay home with her new baby. In December I joined the Alumni Trustee Search Committee. Simon was four, and Miriam was two. I felt ready to take on some new responsibilities. About three weeks after my first (and only) meeting with the search committee, we had Simon's diagnosis. In three hanging file folders in a small file box, I found the remnants of these activities. I had no trouble tossing all of it, I'm proud to say.
How we found our way to Utah
At the back of the file box, I found a loose paper. It was a printout of a three-page email message summarizing a meeting. Markus and I had met in February 2002 with several of his professors and a colleague of mine to discuss our future in light of Simon's illness. Coincident with the Simon's lengthy diagnosis process in December 2001, Markus had been flying to various places for job interviews. He had offers of tenure-track positions at four business schools, but we had a very sick child. Instead of the train trip we had planned as a family right after Christmas to check out two of the schools (both in Ontario, Canada), we spent those days in the hospital for Simon's first round of chemo. In the end, we had to rule out Canada because we would be denied "landed immigrant" status with Simon's medical needs.
That left us with two offers: the London Business School and the University of Utah. Both institutions were understanding of our situation and offered a year's deferral on the appointment. We spoke with neuroblastoma specialists in London and explored our immigration status there (probably fine with Markus' European Union citizenship as an Austrian). In the end, we settled on staying in the United States, and Markus signed a contract with Utah to start in the fall of 2003. I like to joke that I preferred Salt Lake City over London because parking at the grocery store would be easier here. Six years later, I think we made the right choice, given our options.
In that meeting with Markus' professors and my colleague, we received tremendous support. All of them recognized that we needed time as a family to face Simon's medical needs without the upheaval of a move. They set Markus' mind at ease that he would not be jeopardizing his career by postponing things by a year. His department at Michigan was able to offer Markus a one-year lectureship to keep him anchored in Ann Arbor, and I would continue with my job directing Arts at Michigan.
People often wonder how we ended up in Utah, and that's basically the story.
A glimpse of Simon
The part of that email message that really struck me, even more than its reminder of the important mentoring we received and the complexity we were facing, is the way it mentions Simon at the end. He had been with us at the home of Markus' dissertation advisor, apparently asleep for part of the time on a sofa near the group while we were talking.
I don't know if anyone else was concerned about what Simon might be hearing in our conversation. I had a chat with him this morning. He remembered being at the "party". I assured him that if there was anything he listened to, even if he looked asleep, that was OK, and if he had any questions about it, he should ask. He said, "OK", but didn't have any questions yet. BTW, I asked him if he liked that nice, big barn house and would he want to live in a place like that. He said, first of all, it's not really a barn, it's a house. And second of all, he would like to live there because then he would have that cool soccer game. [The house where we met had actually been a barn before it was converted into an extraordinary house.] 2/18/02
Without chancing upon that email message, I don't think I would have remembered Simon's comment about the house that was a barn. But it reminds me of an older scene, when he made a similar assertion. If I were to tell it to you from my memory, I would guess that it took place in the summer before Miriam was born and that we were eating spinach for dinner. However, I went back to the notebook I kept about the children, and I found the actual account. (Miriam would have been five months old; Simon was two-and-a-half.)
June 2, 2009 "Five Years"It's that anniversary thing. So present, so illusive. But I'll try. Today I thought reviving the practice of web posting just might be the right thing to do. For starters, I've put up a "re-run" photo on the main page because I am remembering vividly today how Simon enjoyed Field Day five years ago. (And I'm relieved and proud to say, that I got it right on the very first try, rusty as I am!) Miriam and I were at the school on June 2, 2004, for Simon's Field Day, following more or less unobtrusively, but ever at the ready in case he tired, or in case he got splashed with water and needed a quick dressing change for his central line.
I recall an overcast day. Simon never got wet, but I remember sharing his towels with some of his classmates who stood, teeth-chattering, after a dunk in the tank or a splash in the tug-o-war tub.
I'm not sure which stretches the heart strings more--that it was Simon's last field day, or that it was his only field day. I try to remember instead how happy he seemed during his last days of school. His energy held up, and he did almost everything there was to do. He even walked several blocks the day after Field Day to a park for the first-grade picnic (although he did accept a ride back to school, a small concession to all the disease inside him).
June 4, 2004, was the last day of school. At home that evening, we made a video of Simon singing the Ice Cream Song. I take heart in photos and videos that remind me how good Simon looked and how much happiness he had, before things got so awful for him. Still, from happy-smiling-singing-coloring to dead in the space of two months--that continues to resist comprehension.
The Ice Cream Song may have been the very first video I posted on this site. There are several others that recall the Simon of five years ago. Take a look in the 2004 videos. While you're there, you might notice the one new video I posted in 2008--it's a Christmas tree moment from 2003.
Five years. In August, it will be five years since Simon died. But the anniversary thing gets going ahead of time in a sneaky way. Wait, I think, it hasn't been five years yet. I don't have to feel the five year feeling (whatever that is)--not yet. But it's a whole year of it. Now we've had five of everything without Simon: five of Miriam's birthdays, five Christmases, five Springs, five of Simon's birthdays, five ends of the school year. Miriam is at the "break even" point: the same number of Christmases with Simon gone as she had with him here.
We broke with tradition in May this year and chose to travel to Germany over Simon's birthday. Miriam and I have felt the discombobulation of no lemonade stand, no cemetery visit. We did make it to the cemetery for our Memorial Day picnic tradition. As for the trip to Germany, it was time. Markus had a conference in Istanbul, and we snatched up low airfares so that all three of us could go to Berlin (Markus' sister Christina and her parnter, Peter) and Stuttgart (Markus' parents). Markus flew down to Turkey from Stuttgart while Miriam and I saw the sights and visited with her Oma and Opa.
As I thought it through, whether I wanted to travel over Simon's birthday, I realized that if Simon were here, we would take the trip. And I decided to move forward as if he were still here. Did that strategy work? Not particularly. I'm slowly realizing that, no matter what we do or how we make our decisions, most things still don't feel "right."
And that, along with all the anniversaries that seem to burrow under my skin no matter what my conscious mind is doing, is pretty much what it feels like to live without Simon here. It definitely doesn't feel right.
January 2, 2008 "A New Year"A few days ago a fellow neuroblastoma parent's cheerful reminder of Captain Underpants, as Simon is indelibly known on our listserv, prompted me to post a funny photo of Simon on the first page of this site. It may escape readers' attention that I also posted a link to a website that quickly converts any name into a Captain Underpants silly name. Simon, a.k.a. Snotty Picklebutt, and Mary, a.k.a. Pinky Gigglepants, found this formulaic conversion pretty amusing. What's your silly name? Figure it out, then post it to the re-activated MESSAGE BOARD, where you can see other people's crazy names!
Writing about our story, about Simon's life, still drives my writing life. This fall, I've taken on the radio commentary form. So far, I've had no invitations to read on the air, but I've enjoyed the attempt to focus thoughts in a brief form (under 500 words).
In December 2007 I submitted a "This I Believe" essay to the Community Writing Center and local NPR station KUER. I also sent it to the national This I Believe project. That essay appears on the CWC website. You can also find it ("Hope is the sure conviction . . ." is the opening line) after a brief search on my first and last name on the This I Believe site, where a vast archive of these essays is collected. In my "rejection" notice from the national site, I learned that fewer than 1% of submissions are selected for broadcast. The local station has promised to select essays for broadcast by January 14th.
I have also reworked "Simon's Pumpkin", which first appeared as an update to this WHAT'S HAPPENING" page on July 25, 2007. Here's the current commentary-length piece. I'm still working on the right way to talk about different points of time in the past, as the past continues to accumulate while I write the longer story. As always, I welcome input. If you have been reading this site for a while, you are likely to recognize situations and material that appear in the essay.
I still grow the pumpkin Simon brought home from first grade as a sprouted seed. The tiny plant sat in a styrofoam cup by the kitchen sink, bent and wan with its companion sunflower sprout. Some impulse of preservation possessed me to plant the two seedlings by our backyard fence.
This fall, the fall of 2007, the fourth generation sprawls across the yard. I remember how I first encountered Simon's pumpkin. It was mid-May 2004, and Simon had missed a whole month of school. He had endured a painful growth in his jaw, the first visible, palpable protrusion of cancer lurking inside since he was four. The tumor propelled Simon into a week of radiation treatment--strapped flat on his back like a mummy, pinned under a tight-fitting mask, and left repeatedly in frightening isolation with the beam-throwing machine. Radiation stopped the tumor's assault, but it raised an already harsh life with cancer to a new level of torment.
When Simon arrived back at school, the morning was underway. He stopped short of the classroom, too shy to enter. His teacher shot me a "what now" look. I shrugged. I urged. Then all twenty-three first-graders swarmed into the hallway around their classmate. Simon inhaled the affection, and I, crouched beside him near tears, felt his head burrow into my shoulder. "I hate it when Simon isn't here," lamented one friend, a spokesman for all.
The children's welcome rushed over me again this summer while I tended the garden. Simon's seed, which the class had planted for him, had sprouted first, they reported. At the time, it seemed no surprise that Simon's seed had special magic. Now, I carry a riper view of rapid growth, having witnessed cancer gone wild.
Simon's pumpkin and sunflower grew side by side that first summer. The cheery orange-yellow pumpkin flowers burst open every morning until one day we discovered a mottled green sphere below a broad leaf. I think it was the size of a grapefruit in early July when Simon lost interest. My attempts to show him the plant--to break into his boredom and distract from his misery--met with disdain. Not that I blame him. Even with his indifference, I felt a connection between Simon and his garden, a place of promise beyond his presumed lifetime.
"Save the seeds," said Simon's hospice nurse one morning near the end. "That's Simon's pumpkin. Grow it every year."
And I have. The sunflower, too, whose first rust-brown bloom opened the day after Simon died.
Like a bee I hover over the plants, inspecting every flower. When I discover a pale green ball, fertilized and starting to swell, I relax a little and wonder if this one will grow to Jack-o-Lantern size. Or if I'll make soup, or another pie inscribed: We miss you Simon.
Each year's vines emerge from the earth like cords reaching into the present from an ever receding past. Something is preserved, some part of the bond begun when Simon's embryo found my uterine wall. The plants grow, heedless of the ache I need their help to bear. And I measure the distance between my reality and the one I imagine in other first-grade homes, where seedlings shrivel by the sink while children play in the summer sun.
There are a few specific places where I seek ideas:
How would you describe the color and appearance of the sunflower? (Scroll down for a photo.)
Any thoughts on keeping the flow of time straight? I've written this from a "present tense moment" that was last fall. As time passes, it will be further away. Still, I want to preserve the moment.
July 25, 2007 "Simon's Pumpkin"I still grow the pumpkin that Simon brought home from first grade as a sprouted seed. It arrived in a styrofoam cup and sat by the kitchen window with its companion sunflower sprout. Someone must have dunked water into the cup from time to time. The plants grew bent and wan in their shady spot inside the house.
Some impulse of preservation possessed me to take the plants outside and stick them in the ground by the fence in our backyard. I found a patch where the grass was scant, turned over the soil, and placed the two little plants, roots down, into the earth. I found a milky white rock behind the garage and set it protectively beside the tiny garden to keep it safe from feet and lawn tools. Against the fence above the patch I leaned a favorite old sign that says Simon and Miriam's Garden, playfully painted by our friend Jodi back in Ann Arbor when she generously cared for our garden one cancer-crazed summer.
I'm guessing the planting was sometime at the beginning of June when school let out, although I don't recall exactly. I do remember how we first learned about Simon's pumpkin. That was earlier in May, when Simon returned to school after missing a whole month. To recall the exact context as I reported it then, you can look at WHAT'S HAPPENING May 2004, especially the entry from May 13, 2004.
Thinking back from the vantage point of today, when I am now growing the fourth generation of Simon's pumpkin, I recall Simon's return to school with tenderness. He had been gone for more than a month, during which he had endured a painful tumor in his jaw, torturous radiation therapy to treat the tumor, and collateral damage to the sensitive tissues of his throat. More on that story is on the WHAT'S HAPPENING April 2004 page, in particular the April 17, 2004 entry.
Simon and I arrived at school on Monday, May 13, 2004 after classes were already in session. He was shy and unwilling for his classmates to see him hooked up to a mini-pump in a backpack dispensing pain medication. Principal Brian Conley intercepted us in the hall and welcomed Simon back. He sensed Simon's unease, and together we decided to take him off his pain pump. Then Simon got closer to the door of his classroom. Even without his pump, he could not step into the classroom, so he lingered almost out of sight in the hall. My encouragement was no match for his resistance.
After a while, Ms. Eaton shot me a "what are we supposed to do now" look. I probably shrugged. Then, like a sudden breeze forming in the midst of calm air, all twenty-three children joined their teacher and pushed out into the hallway, forming a loose, vibrant embrace around their beloved classmate. Simon took in all the love of this moment and I, kneeling beside him and probably in tears, felt his head as he burrowed into my shoulder for strength. I was struck by the depth of the children's affection for Simon and the restraint they showed by not touching him, not talking too loud, not overwhelming him in his fragility.
The memory of the children's welcome rushed over me last week in the garden as I tended the pumpkin, and I remembered how one classmate excitedly reported to Simon about their projects growing seeds and that in both projects, Simon's seed, which they had planted in his behalf, had been first to sprout. At the time, I must have felt unsurprised that Simon's seeds had some special magic--didn't he always seem magical? Now, I have a riper view of abundant growth, having witnessed cancer gone wild. Growing fast is not always praiseworthy.
Simon's pumpkin and sunflower grew side by side during the summer of 2004. The pumpkin plant sent a long vine directly south along the fence, aimed straight at the back side of our house. Its cheery orange-yellow flowers bloomed until one day we found a small, mottled green pumpkin starting to mature. I think it was the size of a grapefruit in early July when Simon lost interest in the plant. At that point my attempts to show him the plant--meant to break into his boredom and distract from his pain--met with his disdain. Not that I blame him. Even so, I felt a connection between Simon and his little garden, a place of promise beyond his presumed lifetime. I could see the pumpkin plant from the balcony outside our bedroom, see it growing steadily toward us, a friendly greeting, while Simon rested out his last days.
One morning close to the end, I mentioned the garden to Simon's hospice nurse. She looked out the window and said, "That's Simon's Pumpkin. Save the seeds. Grow it every year."
And I have. The sunflower, too, which bloomed the first time the day after Simon died. It bloomed a rich, somber rust-brown, like a church bell knelling Simon's death.
In the summer of 2005, our friend Elizabeth Ballantyne and her sons David and Daniel made a luxurious pumpkin patch of their front lawn. Their yield was bountiful, and just before Halloween they wheeled over a load for us to carve up as Jack-o-Lanterns and make into pie. Of course I saved the seeds. I also saved seeds from our largest pumpkin, although ours had grown much more weakly. At Halloween, we had one mature pumpkin and five runty ones. We took the little ones and carved them each with a letter of Simon's name and put them out with our Jack-o-Lanterns. The things we think of as we grasp for some way to keep Simon part of our celebrations! That was the Halloween that Miriam tripped and broke her wrist while trick-or-treating. And, yes, the roses are still in bloom for Halloween out here in Utah.
In 2006, I delayed planting seeds. Maybe I didn't want to. Maybe I was too depressed. I did finally, in the middle of June, stick a few sunflower seeds into the strip beside our driveway and a few pumpkin seeds into the narrow herb boxes next to the garage. I guess I was trying to leave the grass alone that year. The sunflowers did fine, and the pumpkin plants grew rather sickly. By November I had one pumpkin to harvest, an elongated pale orange squash that dangled from a vine growing up the fence. We had to buy our Jack-o-Lantern pumpkins. But I saved the seeds, and I think I made a pie (or soup?).
In a misunderstanding late summer, Markus had cut back the sunflowers and thrown them all in the trash bin, which was emptied by the City before Miriam and I had a chance to save our seeds. Being the resilient plant that they are, those sunflowers seeded themselves and came up on their own this spring. I transplanted them to a bed on the east side of our house, a bed that we've ignored until this year. The first flower bloomed last week, and the second opened a few days ago. They're both bright yellow. I keep looking for that burnt brown again.
My pumpkin patch this year is back where we grew the original pumpkin. I cleared a spot, just one foot by two feet, and added a little soil. Then I pushed in three rows with about five seeds each. The first row was 2004, the middle 2005 (both mine and Elizabeth's), and the third row was my shriveled seeds from 2006. And guess what? The seeds from the original pumpkin came up first and strongest. But all three rows had at least two sprouts. Now there's a tangle of plants reaching out across the grass. They have started to flower, and the first tiny pumpkins have appeared. It seems I check daily, if not more often, to see how they are faring. Will they blossom and get fertilized? Will they wither and drop off? I welcome the plants' help in carrying my despair and my search for hope. I think we will have some nice pumpkins by late October. I hope I can find joy in watching them grow.
At one end of the new pumpkin patch is a marigold that started out as a seed in little painted pot Miriam gave me for Mother's Day. We planted her squash plant from first grade next to the marigold, but it died. Just yesterday, after two months in the ground, the marigold showed its first bud. My friend Kate gave me an incredulous look when I told her about Simon's pumpkin. She said it must be about the only pumpkin from first grade that didn't die in its cup next to the sink. I wonder. Yet I know that Simon's pumpkin has received my devotion because I cannot give it to him. It is much better for parents, I think, to rejoice in their withered plants and busy children.
Simon's pumpkin is growing in the gardens of a few neighbors. If you'd like to grow it, too, or his sunflower, please let me know, and I'll figure out a way to get some seeds to you. You can email firstname.lastname@example.org. And, just so you know, Jodi's sign still rests above the garden, quite faded but still sweet.
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