WHAT'S HAPPENING Archive 2006
December 10, 2006 "Uncommon Milestones"After a long hiatus, I find I am wanting to write again. I sent a post this morning to the Neuroblastoma listserv, a group I joined in February 2002. Although I'm rarely active on the list at this point, I knew I needed somewhere to turn with the unusualness of this day. Here's what I sent to the folks on the list.
I awoke this morning, well before my alarm, and found my thoughts in full swing. Today is a day that perhaps only my NB community has a chance of understanding with me.
We are an unusual bunch, tracking unusual information about our children. Remember how we counted time when we very first became parents? The moment that miracle happened holds its own timeless space. Then the first seconds, minutes, hours of our child's life (and I expect the same feelings accompany the moment of adoption). Then we count in days. "My baby is four days old!" Then weeks. "Today he's five and a half weeks old." Then months. "Six months!" That first birthday seems to be equally about the amazing accomplishments of the parents and the child: "We've made it through a whole year!" Even after a full year, we still hang onto the months. "He's fifteen months old" or "He's 27 months old." Simon was 28 months old when his sister Miriam was born.
In the cancer world, I found I was counting that way again. "He was diagnosed two days ago with cancer." Or "It's been 12 days since his last chemo infusion." Or "He's 56 days post-transplant." Since Simon's death, I have found myself counting the moon as it grows full and recedes. The first full moon after Simon's death (August 6, 2004) was on August 30th, two days after we held Simon's memorial service. Markus, Miriam and I went away together September 1-5 that year, and I recall watching the low, silver-white moon cross the sky outside our bed and breakfast room window on those long nights. It was a beautiful light, and it began my feeling that somehow Simon's life force comes back to me in reflection from the moon. The current moon now waning is the 29th moon since Simon died. (Anyone as curious about the phases of the moon as I am might enjoy http://aa.usno.navy.mil/data/docs/MoonPhase.html.)
Today takes on many aspects of our unusual ways of marking time. Miriam was born on September 20, 1999. Simon was 28 months old. (To be exact, he was 2 years, 4 months, and three days old. For anyone as obsessed with relationships between dates as I am, you might enjoy the date calculators at http://www.timeanddate.com/date/duration.html. Anyone who likes to watch cute kids in action can take a look at a little video of Simon welcoming Miriam home on September 21, 1999 here.)
When Simon died, he was seven years old. Seven years, two months, and twenty days. From that moment, I have been aware that, one day, his little sister would pass him by in age. That day is today. Miriam is a beautiful, healthy seven-year-old girl. She is able to do so many more things than Simon could do, especially in the final months of his life. Without cancer care as the driving force in our home, Miriam can focus on the fun work of being a first-grader, learning to draw with charcoal, learning to dance, playing with friends, petting our cats.
Today she is singing in church with the children's choir. She's got her festive Christmas outfit laid out on the end of her bed, waiting for her to wake up and join the other kids in performance. As I lay sleeplessly in bed early this morning, my fingers once again tapped along my thighs to help my mental calculations of the passage of time. I've done the math in my head several times. Now Markus has verified it all on a nifty internet tool. Mapping one child's life onto the other's as we so often do, today is the day in Miriam's life that Simon died.
She said it herself earlier this fall when she was comprehending that she is now seven years old. "If I was Simon, then I'd be dead now." We cannot underestimate the impact of a sibling's death on the psyche of surviving children. She does not obsess, but she takes note and seems to live somewhere between clinging to the shreds of her own innocence and acknowledging all the trauma she has lived through.
Most mornings we still all end up in the big bed. Simon used to come over with regularity around 1:30 am. He would bring his sippy cup of water and his pillow and politely ask from the foot of our bed, "May I come into your bed?" He crawled in the middle. Later on, MIriam would wander over, too, and snuggle on my other side. Constricting as it may have sometimes felt, I have never regretted those days when I woke up as a "mommy sandwich" between my two sleeping children. This morning, Miriam flopped restlessly with a stuffy nose in the middle of our bed, waking both me and Markus past the point of going back to sleep. I walked around the bed so I could snuggle into the 6 inches of mattress remaining next to Markus. And I told him my thoughts. Today is the day that Miriam gets older than Simon.
I lay there and let the tears stream down my face, taking comfort from my husband and feeling his sadness, too. A narrow rectangle of silvery moonlight shone through the skylight onto the empty side of our bed. Two years, four months, and three days ago Simon exhaled his last breath in that same bed. Come to think of it, Simon died at 5:04 am, which is about the time that I was permanently awake this morning.
Today we embark into new phases of parenting. We've never had a child this old before. I know we'll figure out whatever it is we need to know, but I sure do miss Simon paving the way for his little sister on the paths of life.
August 3, 2006 "Anniversary Approaching"I've just done a little updating on the site, adding guestbook entries and posting information about the Sunday morning concert at our church with the Royal Heritage Ensemble. We hope that this engaging music duo will offer a fun morning of music for any and all. We hope for ourselves that being in community will ease some of the pain of reaching the end of a second year without Simon.
We have just been on a trip out to points in the Northwest where we attended a lovely 50th Wedding Anniversary celebration for my Aunt Betty and Uncle Fred Tabbutt. We spent a weekend with the Tabbutt clan, as well as Julie, Ralph, Nathan and Margot (my sister's family). It was a pile of kids--thirteen in all. To help the children get better acquainted, my uncle created a photo scavenger hunt along the "nature trail" at the back of their property. The children were sent to find the photos and then write down first and last names of all the kids (Tabbutts, Tanels, Vodoseks, Lautens, and summer exchange student Andrei!). In a gesture that we found lovely and bittersweet, my uncle included a photo of Simon. Most of the Tabbutt kids never got to meet him, but my nephew Nathan (on the boys team) and Miriam (on the girls team) could tell everyone who Simon was.
I am grateful to be part of a family that chooses to remember Simon openly and lovingly, including him with all the other children. In a post to the MESSAGE BOARD on July 29, 2006 Laura Seasholes refers to the scavenger hunt. I had fun talking with Laura at the party--we hadn't seen each other since early college days. It turns out, she was Lexi's second grade teacher in Seattle last year (my cousin Curt and Lawrie's daughter).
I wish I had the energy to tell more about us, about our summer, about new layers of grief. But I don't. This summer has been a hard one for me, and the anniversary effect feels overpowering. I will share again when I can. Thank you to everyone who is sending love and support. It means as much now as ever.
July 1, 2006 "Dragonflies!"Markus, Miriam and I had a gardening adventure this evening and found ourselves surrounded by a magnificent cloud of dragonflies.
For the past couple of months, we've been working on overhauling our "park strip," which is a strip of lawn 25 feet wide by 5 feet deep along the street edge of our property. It's technically owned by the City and contains the gas and water lines for our home. When we bought the house in 2003, a large old silver maple burst its space in this strip to the ruin of the sidewalk and street gutter. After two years, we were certain that the tree was in fast decline, and we had the City remove it last November.
This spring we began the process of having the curb and the sidewalk replaced. After that we were able to have a new tree planted in June. We chose a Zelkova Serrata "Green Vase" (a Japanese elm known to do well here in Salt Lake City). We find this tree especially meaningful because it is the same species as the tree that Simon's Vodosek granparents dedicated in his memory at the Botanical Garden at Hohenheim University in Germany (see the tribute here). Our new tree appears to be a fine specimen, already tall enough to extend several feet above our second-floor balcony.
With the new tree and new sidewalk came the chance to redo our "park strip." Around here, many homeowners choose to remove traditional sod (grass) lawns and replace them with low-water plants, a practice known as "xeriscaping." The City was kind enough to tear out the sod for us while they removed the damaged sidewalk and curb.
With the help of a design drawn up by Franci at Xeriscape Design (an opportunity we got by bidding during our NPR station's recent auction/fund drive), we headed off a few weeks ago to the stone yard to get some small boulders. We "planted" them into our curb strip shortly after the tree was settled.
Today was our day to get the plants that Franci specified. Many were unfamiliar to us, so we were curious to see them. It's late in the season for planting, and we had to try a few nurseries to pull together most of what we needed. Franci followed our wishes for lots of colorful flowers, especially Simon's favorite color magenta. We were most pleasantly surprised to discover the plant called Mojave Sage. It is highly aromatic and has mauve leaves around spikes of blue-purple flowers.
After supper, Markus, Miriam and I went out to put the plants into the ground. As we began to dig, we noticed a couple of dragonflies, playfully darting about the sky over our front yard. Soon, there were more. Their wings caught the early evening light and flashed. Perhaps they were attracted to the sage plants, too! As we worked, the swarm of dragonflies grew. They kept darting about, just over our yard. A few neighbors came by to admire our new plants and watch the dragonflies at play.
Of course, we think of Simon. The dragonflies zipped about over the driveway, just like Simon on a scooter or on his bike. They teased each other, playing tag. Later, I asked Miriam if she thought they were Simon and his friends coming to visit with us. She saw something even more beautiful than that. She told me the dragonflies were all flying about to draw lines to form a picture of Simon--Simon wearing his favorite tie-dye T-shirt outfit (see Miram's drawing from 2004).
Just the other day at the swimming pool, I saw a dragonfly. I remembered how in the early months after Simon died I thought every dragonfly was him coming back for a visit. As time went by, I felt that kind of "magical" presence less strongly. But I chose to let it come again the other day at the pool, and I noticed that life just feels better when I decide the dragonflies are Simon. And what a visit we got tonight!
The moon is waxing for the 24th time since Simon died. We are always thinking of him, always looking for ways to keep his spirit in our lives, in our gardens, in our dreams.
May 10, 2006 "Not even a quarterly update for you this year!"I know that people who read this site are pretty savvy about navigating its nooks and crannies, finding the new content even without an update here to alert you to what's been going on. So, four months of 2006 have come and gone. I guess we've all been pretty busy. And I guess that's a good thing.
Year number two has a pretty "bad" reputation in grief circles. It's the year when the numbness of year number one wears off, when the pain of the loss can become more intense, when the reality of the loss becomes harder to evade. We are now well along in year two. May 6th came and went without any of us noting that it was 21 months since Simon died. I had a day full of rehearsals and voice teaching. Miriam had a soccer game and spent the day with Markus doing stuff. As I recall, we had a fairly quiet evening together at home.
The moon is waxing toward full now for the 22nd time since Simon died. We are starting to see the length of a moon cycle diverge slightly from our counting of the months. I still wonder if or when I will lose track of the moon. So far (with the help of my trusty moon calendar), I'm still counting. Right now the moon is high and visible above our house in the early night sky. I've also spotted it lately during the late afternoon, floating white against a Utah blue sky.
In the remembering Simon area, we've been busy, publicly busy. Of course, we are always remembering Simon at home. We still light candles the same way we did at his memorial services. The photo at left shows the candles lit by Simon's friends when we had a birthday gathering at our home last May at the time of Simon's eighth birthday.
May 17th is around the corner, and we are gearing up for Simon's birthday next week. We'll be celebrating again this year with our second annual Simon's Birthday Lemonade Stand. We are excited about the attention our lemonade stand is garnering. On May 3rd, Markus, Miriam and Mary gave a live radio interview at our local NPR affilate, KCPW. We were joined on air by Liz Scott, mother of Alex Scott (founder of the lemonade stand movement). You can listen to the interview here.
In April, we remembered Simon in a wonderful new way. On April 14, 2006 we went up to Brighton Ski Resort to dedicate a newly named ski run: Simon's Way. I posted information about that event in a new page on this site: Named After Simon. Markus hatched the idea and made all the contacts and arrangements to have this naming take place. It was a touching event, covered nicely in local television and print news.
I want to close this update with a glimpse into the lead-up to Mother's Day. Miriam seems to be especially aware of this upcoming day, partly from a planning surprises perspective (lucky me!) and partly out of sensitivity to my feelings of missing Simon on Mother's Day. She is now 6.5 years old and wrapping up her kindergarten year with a firm grasp on handwriting. Here's the note she left on my pillow last night at bedtime, a note she created without any assistance.
"To Mom I love you These are two wishes to have Simon back"
January 5, 2006 "A New Year"The arrival of a new year, with its sense of new beginnings, empowers us to distance ourselves from the past, to move on, to start over. We look at the things we are glad to be leaving behind us. We embolden ourselves with ideas of new projects to take on.
I hate the new year. Well, maybe that's too strong. But I am really struggling with the passage of time. I resent that time in its ever forward march is taking me further and further away from the time that Simon was here with me. When 2005 began, I knew I was entering a year that never held Simon. Now that 2006 is here, I feel even further cut off. This year isn't even one that *touched* a year that Simon was in.
My memories and feelings about Simon are all bundled together in a fierce tangle from which I am unable to let go of the terrible parts while holding on to the wonderful parts. I imagine that is the ongoing work of grief and mourning and that there is little I can do to influence its pace besides do my best to stay present and feel all the feelings.
One year ago, I was writing in a journal of thoughts to Simon in the wee hours of the morning. I know this to be the case because I can flip to the page in the journal, not because I can remember doing it. I had recently begun to convert our analog videotapes into digital files for editing, thanks to a Christmas gift of a 250 gigabyte hard drive to store the huge files. Memories of Simon at various parts of his life were vivid (for some examples, take a look at Memories in Audio and Video).
I want to share a bit of what I wrote that night as a recollection of New Year's one year ago. One observation I would make about last year compared to this year is that I seemed to be in a dreamier place last year, where it was easier to feel optimism about keeping Simon's memory alive. They say in year two, the "numbness" tends to be gone, leaving the mourner less "protected" from facing the reality of the loss. My grief seems to be following that pattern.
Two years ago, at the beginning of 2004, Simon was with us. The memories stack up that way, too. One year ago was the first year without Simon. Two years ago, he was here . . . I noticed a lengthy entry in the WHAT'S HAPPENING Archive describing all our doings that year, including our trip to San Francisco for a consultation at UCSF and our visit at Pixar Studios. That year began on a precariously optimistic note, with the bad news of extensive disease progression discovered later that January.
Another memory of New Year's 2003/2004 comes from an intergenerational church service held at First Unitarian Church of Salt Lake City with our beloved former minister, Silvia Behrend. We were all encouraged to write down a wish for ourselves for the coming year. We wrote them onto postcards, which were mailed out to us in May of the same year to remind us of what we had been wishing. I saved the card that Simon wrote to himself.
Looking much farther back in time, I came across a photo of our happy New Year's Eve gathering when 1999 became 2000. Gee, does anyone else remember all the uproar about Y2K? We were in Ann Arbor, and our footloose friends (i.e., not yet with kids of their own) came to our house to celebrate so we could put the kids to bed and have some fun after they were asleep. Our guests were Anne Adams and Tom Schnauber (the dear friends to whom we entrusted the task of escorting Simon to the hospital to meet his new sister) and John and Tammy (my memory is faded on their last names!). The photo shows everyone holding musical instruments because we were having a New Year's Eve parade, no doubt at Simon's suggestion. Simon, then two and a half, appears to be chewing on a marshmallow, but it's actually the lower end of a slid whistle. Miriam is three months (look at the way she used to bite that lower lip!).
Simon, Tom, Tammy, John, Anne, Miriam, Markus (Mary is behind the camera)
This year our New Year's Eve celebration was a quiet evening at home. Markus made delicious fondues (cheese for the main course, chocolate for dessert). After that, the three of us snuggled up in the TV room for a few rounds of the Monkeyball video game (which was Simon's--Miriam gave Markus a new controller for Christmas to replace a broken one, so now we have three again). After that, we watched the film "Monsters Inc." and remembered our trip to the Pixar studios two years ago with Simon. It was fun to see the movie again and especially fun to observe Miriam's reactions. She chuckled heartily at various points, and I think she's really getting the jokes now! We still love the "Outtakes," and we remember many happy family movie nights with Simon.
Miriam is learning a lot about numbers at school, and we talked about the new year being 2006. Suddenly, it occurred to me that Miriam is 6 in the year 2006, until she turns 7 in September. She was born in 1999. So, her age will always be the same as the year, or plus one after her birthday. It felt funny that I had never noticed that before, since it has always been the case. I guess life is like that.
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