WHAT'S HAPPENING Archive February and March 2005
March 24, 2005 "Going Home; Coming Home"Miriam and I (Mary) took a trip to Ann Arbor, Michigan March 17-21. To all those friends in Ann Arbor whom we could not see on this visit: please, please accept our apologies for keeping a low profile. The important news is that we will be returning to Ann Arbor in early June. The purpose of our recent trip was to focus on planning for events that will take place in June. More on these efforts appears below.
That said, we did manage to pack a bunch of stuff into our four days in Michigan.
Miriam and I stayed at the home of Linda Britt, who was our daycare provider for Simon and Miriam from 1998 to 2003. Linda continues to offer amazing, loving, warm, nutritional, fun, stimulating, and restful care to a lucky group of children and their families. Since our time, Linda has expanded from a group of six children to a group of nine or so. She is joined by her daughter-in-law, Stacey, in caring for the children. Simon joined Linda's house at the age of 15 months in the fall of 1998. Miriam began at one day a week at a mere 2 months of age in December 1999. It was rewarding on so many levels, from the practical to the forging of a strong sibling bond, to have our two children spend their daycare hours together.
Miriam was able to spend Friday and Monday at Linda's with the rest of the kids. She reconnected with old friends, who have done a lot of growing since we left Ann Arbor. She also made new friends and had an especially good time with a new toddler named Silva, who took quite a liking to Miriam. Miriam also reconnected with Kitty, who is now a rather rickety old lady of sixteen. Compared with our big boys, Sam and Simon-the-Cat, Linda's Kitty is tiny now!
While Miriam was at Linda's, I was able to do some visiting in addition to planning for June. I met my former boss, Lester Monts, for breakfast. I visited with Bonnie Marquis, Brian Hoey and their daughter, Kyleigh, over lunch. Bonnie was our doula (birth assistant) for both births. They had been away in Traverse City for several years but are now back in Ann Arbor. Bonnie was also Simon's part-time nanny until he was seven months old. Our bonds are very strong, and it was good to see them and to meet Kyleigh (15 months).
We spent Friday evening at the home of Matt Kaplan and Caroline Helton, and their daughter Hava and Ruby-the-Dog. Our friends Anne and Tom Schnauber, with their son, Johannes, drove up from South Bend for the weekend. Both families had traveled to Salt Lake City for Simon's memorial service, and it was our first chance to see each other since then. The Hammermesh family (David, Amy, Jonathan, Miriam and Grandma Sue) came over for dinner, and we shared Shabbat in the lighting of candles for each of the children (including Simon), the reading of blessings, the singing of Hebrew songs (well, those who can sing them did so!), and a delicious dinner. The Hammermesh family had been in Salt Lake City last summer, and they were wonderful companions for Miriam during that very difficult time for Simon and those of us caring for him.
On Saturday afternoon, Miriam and I visited with Maya, Dörte, and Michael Rodemer. In the evening, we had dinner with Bonnie and family, and Miriam was delighted to meet "Baby" Kyleigh. I was able to share with Bonnie some of the very tender and difficult images of Simon as he grew closer to death last summer. It is never easy, but it remains important.
Sunday evening we were joined by Grann and Grandad (Ann and Norm Craig), who drove up from Oberlin, Ohio. We hung out at Linda's house and looked through all the little photo albums that included pictures of Simon and Miriam. I'd guess there were about 25 little albums. It is fun, rather than painful, to see the kids having such a good time over the years.
We had dinner at Macaroni Grill, which had been a family favorite. Miriam and Simon always loved watching the cooks at work, with their dramatically flaming skillets. We all like the food. Linda joined us, and we remembered other times that she had joined our family for a meal there.
On Monday morning I had a chance to see my friend James Steward for breakfast. James is the director of the University of Michigan Museum of Art, and we became friends in the summer of 1998 when he first came to Michigan. We both remember the first time he came to our home for dinner and how impressed he was with our jolly little Simon. During my years with Arts at Michigan, James and I had numerous occasions to work together.
Later Monday morning I stopped ever so briefly by the University of Michigan Comprehensive Cancer Center. It was not easy to go into that place, with all its memories of time spent there with Simon. I happened to run into the moms of two other children who were hospitalized on the isolation wing at the same time as Simon's stem cell transplant in 2002. The child with AML (accute myelitic leukemia) was doing very well! The child who is also fighting neuroblastoma is facing disease progression. It was an unanticipated reunion of our little group. Both families were startled to hear of Simon's death.
By then I was really running late, so I looked for a moment and a quick group hug into the nurse's station at the pediatric infusion room. It was just enough time to grab and email address for a contact there to help me with our event planning. One of Simon's regular nurses, Martha, said a couple of times, "Simon was so much fun." He definitely kept his nurses on their toes. As I was leaving, Simon's buddy Jenny Gretzma, a Child Life specialist, hailed me in the hallway. She gave me a big hug and told me how much she's enjoyed postings on the site since Simon's death, especially the videos.
From the hospital, I headed over to the William Davidson Institute at the Business School. My former colleage, Jill Elliott, had arranged a lunch gathering. Many of the people from the Business School tribute to Simon last October were present. They showed me some of the beautiful things they had made for the event: a white paper bag with a picture of Simon on it (for the popcorn) and a large poster of Simon (see the TRIBUTES page for an image). It took my breath away to see such a large image of Simon. It wasn't life-size, but it was more than half his size. I had wondered what it might feel like to see such a replica of him. It was very lovely indeed. Several of these friends offered to help out in June, too. Thank you!
Friday afternoon was devoted to meetings at the First Unitarian Universalist Church, where we will hold two events in June. The schedule is not quite finalized, but the plan is to hold a memorial service for Simon on the evening of Friday, June 3 (although it may switch to late Saturday morning on June 4). Then, we will work together with another family to hold a benefit concert/festival on the afternoon of Sunday, June 5th. Sadly, our Ann Arbor church lost another child to cancer last summer. Meagan Margerum-Leys died of an inoperable malignant brain tumor at the age of fifteen on June 21, 2004. To learn more about Meagan, please visit meaganscorner.org.
The benefit concert/festival will be headlined by Gemini, and several other groups will participate as well. Proceeds from the benefit will be given to the First Unitarian Universalist Church of Ann Arbor for the creation of a new Children's Garden on the grounds of the church. This lasting tribute to Simon and Meagan also offers thanks to the congregation that has provided so much support to both our families through our tragedies.
I had good meetings with Julie and Jon Margerum-Leys to map out plans for the benefit. They had just completed an important event in Meagan's memory on March 16, which would have been Meagan's sixteenth birthday. Meagan's school, the Rudolph Steiner School, has dedicated a library in Meagan's memory. I could tell that the dedication event was meaningful and uplifting, despite the underlying devastation of their loss of Meagan.
On Sunday morning, I was able to meet with three church friends who will be helpers as we plan our two events. Carol Shultheis, Sandra Walls, and Kyla Boyse have signed on, and we are so grateful for their help! Very shortly I will be posting more specifics about the Ann Arbor memorial events, including requests for various kinds of help. Stay tuned!
For now, please mark your calendars with the dates: June 3-5, 2005 in Ann Arbor, Michigan. We would be delighted to welcome out-of-town guests and will have a network of overnight accommodations available.
Before heading home Monday evening, Miriam and I were joined by the children and some of the parents at Linda's house in lighting "Simon candles". Miriam and I had brought Linda her own set of candles just like the ones we used at the service and continue to use at home. When we arrived, we had intended to use sand from Linda's sandbox to hold the candles. But it was so wet, we had to set it out to dry for a couple of days! Instead, we decided our first night there to make little holders out of Linda's homemade pink playdough. It was a great idea.
The children each made little playdough candle holders and then one by one (and carefully aided by grown-ups), they each lit a candle from the central Simon candle and added it to the colorful display. Linda explained to the children (many of whom didn't really know Simon) that we use all these colors because Simon loved color so much. While the candles were lit, we listened to the song Laz (of Gemini) wrote for Simon. It was a very sweet little ceremony, and the kids eagerly blew out the candles when we were done. For more photos of the children at Linda's house and the candlelighting, click here.
March 10, 2005 "A Chance to Thank One of Our Medical Heros"We just learned that Dr. Sarah Friebert, MD is participating in the St. Baldrick's fundraiser to support research about childhood cancer. We'd be honored if you would consider making a contribution in recognition of her generous help to Simon during his dying process last summer.
The event is in two days, so please act quickly if you are interested.
Here's the same information I put in the "Recent Updates" box on the main page of this site.
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NEWS FLASH 3/10/05
St. Baldrick's Fundraiser for Childhood Cancer Research
Dr. Sarah Friebert, MD (a.k.a. Mary's high school tennis team doubles partner and a whole lot more) will shave her head on March 12, 2005 to raise money to support research to find a cure for childhood cancer! Sarah is the director of palliative care at the children's hospital in Akron, Ohio. Early in the summer of 2004, we reconnected, and she offered extremely helpful guidance over the phone as we cared for Simon through his dying process. As it happened, our doctor in Salt Lake City was away during two very critical weeks for us. I don't know what we would have done without Sarah's generous and sound counsel. If you'd like to help us express our gratitude to Sarah, please pop over immediately to the St. Baldrick's Web site to make your contribution!
You can see some very funny photos of Sarah in the greeting she sent to Simon last summer.
March 5, 2005 "Almost Seven Months"I knew it had been a while since I last wrote an update here. But has it really been four weeks? I expect some of you have discovered in the meantime that I've added several new videos and some updates to the SIMON SAYS section.
Today I am working from my fabulous "corner office" in the Needles Lodge at the top of the Snowbasin Resort. There's a wide-open blue sky with white, white snow and evergreens all around. Markus and Miriam are out tearing up the slopes. I decided not to ski today, so I brought along my laptop and my notebooks to have a writing day.
Oh, it makes me feel as though I've been visiting with Simon. I have made many additions to the SIMON SAYS section. I've touched on notes made in 2002, 2003, and 2004. Oh, how I miss the things that Simon used to say!
What else has been going on?
In February, we had fun for nine days when Steve, Annette, and Rowan Williams were out from Oakland, California. The big Williams clan winter gathering was in Florida this year instead of Park City, Utah. So, we were delighted that the Californians came to Utah anyway. They were joined by their friends Mike and Lise and their three children, Danielle, Adrienne, and Jacob. Markus and Miriam joined the big group for skiing a few times, and we had everyone over for simple suppers twice. We also got to show off Salt Lake's Red Rock Brew Pub and Red Iguana (Mexican) restaurants.
After Mike, Lise, and the kids left, Rowan, Steve, and Annette came to stay at our house for 4 nights. Miriam and Rowan had so much fun together. Miriam was happy to go on outings with the Williamses (including the hot tubs and pool at the Park City timeshare!). At our house, Rowan and Miriam played up a storm. They made great use of Simon's things. When they weren't playing Monkey Ball on the GameCube, they were building with Lego and putting together massive complexes with blocks and Playmobil.
Rowan slept in Simon's bed, which is still in Miriam's room. For all of us, including the Williamses, the reminders of Simon were everywhere. I know that Rowan and Miriam were enjoying each other's company as much as they were both reminiscing about Simon. Rowan is ten weeks older than Simon, and they bonded during annual vacations at Crystal Lake in Michigan as well as during our visits in 2004 to Oakland while Simon was treated at UCSF.
On the day that Rowan and his parents left, we watched Miriam give him a hug good-bye. She held on as though she'd never let go. I asked Rowan if he could pick her up, the way Simon always did (see a video of Simon and Miriam doing a "Pick-up"). He picked her up twice. It was very sweet to watch.
Later that afternoon, Miriam seemed very down and not sure what to do without Rowan to play with. I was also feeling very deflated after all the liveliness of the visit. I sat on the playroom floor and beckoned her to my lap. I began to cry, and she, too, began to cry with tears and small sobs. I know she's missing Rowan, and, in a way indescribably more abstract, she is missing Simon, too.
[At that point, we packed up and went home from Snowbasin this afternoon. Now it's approaching bedtime, but I wanted to finish out and upload.]
As for my own skiing, I have fulfilled my Christmas promise to try it three times. In fact, I went two extra times, including a one-hour lesson. I imagine I'll go again this season, but I think I'll stick to the "Ski for Free after Three" lifts at Alta, where you can rent equipment for those last 90 minutes of the day for just $5. Perfect for the beginner not ready to invest in all the accoutrements of skiing.
We miss Simon. This morning, Miriam found Simon's GameBoy (handheld electronic game). She was trying it out to take it along in the car. When she turned it on, it made its familiar "pling" sounds. The tones immediately brought Simon to mind. When the memory is jogged by a particular sense, such as hearing, it seems to have a different channel into the soul and psyche than words do. I had tears spring to my eyes. Miriam began to look very sad and teary-eyed, too. I told Miriam and Markus that I wasn't ready to hear that sound yet. I asked Miriam if she was feeling that way, too. She nodded and decided to leave the GameBoy at home for another day. We had a nice family hug.
Tomorrow, March 6th, marks seven months since Simon died. Shall we all send our best vibes and wishes and prayers to him in his new place? Perhaps we will feel some of his sunniness shine down on us as we stop to remember him.
February 6, 2005 "Six Months"Today we mark six months since our beloved Simon died. It seems the air in the room grows heavier around me as I try to find words to type, try to find the impetus to communicate. What has changed? What hasn't? How is now different from two months ago, or four?
I think in many ways the reality settles in. The trauma begins to wear off, taking with it the coating that seems to cause numbness. Countless times in our grieving and in our living forward, we may confront a moment of confusion: Did Simon really die? Did Simon actually live? How do I comprehend these happenings? How is it possible that my certainty of him is ever shaken?
The more times I arrive at this perplexing place, the more I seem to absorb the knowledge that Simon is dead. And the more I realize this truth, the more I can feel of my pain at the loss. Mercifully, it ebbs and flows.
Commemorating Six Months
To commemorate the half-year point since Simon's death, we did several things together with my parents yesterday. Fortunately, Miriam was feeling well enough for a little adventure. After an afternoon session at the ice rink, we got ready for an evening out. We first stopped at Mt. Olivet Cemetery to visit Simon's grave together. In the photo, you can see the lovely weeping birch tree that shades his grave. We don't have a stone yet, and the grave is draped with branches from the birch tree and other found natural objects.
Then we went to the Spaghetti Factory for dinner. The Saturday night hostess crew was on duty, and they still remember the last time we were there with Simon back in July.
After our dinner, we returned home. I quickly finished preparation of a "We Love You Simon" apple pie. While the pie baked, we sat around the table and played a lively German card game called "Hol's der Geier". Miriam played for the first time, and she was terrific.
Of course we had our Simon candles lit (we still light a candle like the large one used at his memorial service and then light smaller, colorful candles to set in the sand around the large one). When the pie was ready, we served it up. Each slice had part of the heart carved in the middle of the pie's design. It's a simple ritual, really. We've made a Simon pie three times now (on his half-birthday in November, with Oberlin friends before Thanksgiving, and now). In general, we find it helps to commemorate in any way we can, and that it helps to join with others as we do so.
Markus has also been keeping busy by taking up two sport forms with Miriam. On Monday evenings, they both take ice skating lessons, and on Saturday mornings, they take swimming. Since these are both sports that I learned pretty well as a child, I'm not joining in the lessons. As for skiing, I have made one attempt so far this season. I actually promised Markus I'd give it three tries (it was my Christmas gift to him), so I guess I'll have to give it another go pretty soon. (Can you feel my enthusiasm?)
Miriam is doing well in school (she's still at the Virginia Tanner Fine Arts Preschool). She will be a tall and mature kindergartener next fall (she turns six on September 20, but in Utah that's too young to start the next grade). We're all looking forward to our next family outing to see Ballet West's "Cinderella" next Saturday.
I (Mary) am also continuing my pursuits, although they remain ungainful, financially. I do yoga. I track our medical bills (still hassling on some of Simon's accounts). I sing (in choir at the Unitarian Church, in preparation for a program of Gershwin, Porter, and Kern in April, and with my friend, Elizabeth). I tinker with this Web site. I think many of you have discovered the little videos I've been adding to the site.
Miriam mentions Simon here and there. She calls him "my brother". As we made our plans for yesterday, she said, "Do you know why I want to go skating? Because I wish my brother could go skating." Simon never had that chance, but Miriam thinks he would have enjoyed it. Although she's not currently in a grief group, she is on the wait-list for The Sharing Place, which is a local non-profit offering grief support to children. She describes this kind of grief work as "things about Simon".
I am the most active griever in the family. Recently someone asked me the "What do you do?" question. I told her that I am pretty much in full-time mourning. But what does that mean? I think it means I am not ready to give other activities precedence over my need to live out my loss. It does not mean that I spend all my time crying or reading grief books or staring at the wall. I do seem to have a pretty one-track mind because almost everything relates for me to my experience with, and now without, Simon.
I do read a lot, some of it's grief literature. I write a fair amount. I have stopped going for massage (my body isn't ready to release its tension). In January, I started working one-on-one with a therapist to explore my grief. Her name is Betsy Phillips, and I got the referral from a hospice minister friend at church. It's difficult to describe the format because we're inventing it as we go. Betsy's skills include counseling, massage therapy, yoga, art therapy, etc. I have been seeking a means to explore the response in my body to this loss, and the mix of movement, roleplay, bodywork, relaxation, etc. is proving to be very fruitful. Whenever I describe this arrangement to a grief professional (like a hospital social worker), I get sound encouragement.
OK, I've sufficiently exhausted myself here in topics and in energy. Still, I value the chance to come here and write my story, and I am grateful to those who are checking in.
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