WHAT'S HAPPENING Archive April 2005
April 19, 2005 "A Trip to Denver"I (Mary) returned yesterday evening from a trip to Golden, Colorado with members of the choir at First Unitarian of Salt Lake City. We joined the choir at the Jefferson Unitarian Church (JUC) in Golden for the weekend. I drove down with two "lady tenors" from our choir: Joan Johnson and Judy Lord. We made the 7-hour trip easily in Joan's car.
In Golden, I was welcomed into the home of the Brayden family for two nights. The combined choir had a leisurely rehearsal on Saturday morning, and on Sunday we presented two services highlighting the words of Emily Dickinson and Walt Whitman. It was a lovely flow of readings and music using Dickinson and Whitman texts. I had the opportunity to perform Aaron Copland's setting of Dickinson's "Sleep is supposed to be" accompanied by David Owens. It was fun to share that vigorous piece with its jagged, intervalic lines and dissonant harmonies.
A very meaningful part of the weekend was the chance to meet up with another neuroblastoma family. I have been corresponding for about three years on an ACOR (Association of Cancer Online Resources) listserv with other families facing neuroblastoma. The Lockler family of Aurora (near Denver) has been dealing with neuroblastoma even longer than we have. Their daughter, Becca, was diagnosed with neuroblastoma at the age of four in 1999. She beat back the disease, plus two relapses.
Becca died at the age of nine on June 17, 2004. Shortly after Becca's death, her mom, Theresa, set up a separate listserv specifically for parents who have lost a child to neuroblastoma. We call it the NB-Angels group. I have been grateful for this new forum, which welcomes frank expression of our grief and other situations we are now facing. Last summer, if felt as if Theresa was eons ahead of me in the grief process when Simon died on August 6th. As the year has gone by, I feel the gap is fading away.
Before heading out to Denver I had contacted Theresa, and we were able to meet up twice during the weekend. On Saturday evening, Theresa and her husband James came and found me at the restaurant where I was finishing dinner (it's called Julia Blackbird's New Mexican Cafe, and it was yummy). Here's what we looked like before walking across the street to have a cup of coffee together:
Over coffee, we had the kind of conversation you truly only can have with another parent who has cared for a child dying of neuroblastoma. Becca had some similar end-of-life symptoms as Simon, especially the location of tumors on the skull and behind the eyes, as well as terrible trouble with bowel function. Yes, we talked some about the details of the disease, but we talked more about our experience of our child's departure from life. As with so many times of telling the story, I felt maybe a little closer to "understanding" what has happened in my life and in my loss of Simon.
Theresa and James, accompanied by Jamie (16), Janna (14), and Byron (11), delighted me on Sunday morning by coming to the Unitarian Church for our second service. It was fun for me to have some friends in the congregation there.
Right after the service, we zipped away to the cemetery where Becca is buried. I joined the Locklers and several of their friends for the ritual of releasing balloons at Becca's grave to mark the 10th month since her death. There were ten purple balloons (her favorite color), one for each month. And there was one bright blue balloon for Simon. At 12:40 pm, the time of Becca's death, we released the balloons into the air. Theresa played a Celine Dion song (I didn't quite catch the name, but it was a song they played at Becca's service) from the car stereo as we sent the balloons upward.
Then we stood around the grave and prayed The Lord's Prayer. The Locklers and several of their friends are Catholic. After the prayer, people spoke brief words. I was especially tickled when one friend called up to Becca and Simon, "Have fun with the Pope!" Then I offered to sing a song, and I sang "Amazin' Grace", which I had just performed back in Salt Lake City for a graveside service. It was nice to be able to share the song again.
After our ceremony, the Locklers zoomed me back to JUC so I could join my traveling partners and head back to Utah. We took the scenic route home, which included an overnight stay at the Skyridge Inn in Torrey, Utah. It's the same place that Markus and Miriam and I visited right after Simon's memorial service last summer. We spent a gorgeous Monday driving and wandering through Capitol Reef National Park. Its landscape of colorfully layered rock formations combined with historic fruit orchards is stunning. The pears were in bloom, and the apples were just beginning. It was a great way to wind up our little trip.
Here are photos of the Lockler family and guests at Becca's grave on Sunday, April 17th. A baby brother, who died a miscarriage partway through Becca's life with cancer, is now buried together with Becca. His name was Christopher, and his name is also on the stone.
April 7, 2005 "Some Interesting Intersections"I am so touched by the MESSAGE BOARD post on April 6 from Patty in Ann Arbor. It seems that an important response to Simon's story is for people, even those who never met him, to take a meaningful look at their lives and take in deep, nourishing breaths of the now and the beautiful. As one conduit for Simon's life message, I feel humbled and uplifted by the power of what he can communicate to others.
Yesterday, the day of Patty's post, marked eight months since Simon died. Markus, Miriam and I had dinner together at the Old Spaghetti Factory at Trolley Square. We sat inside the trolley and remembered the many happy times, and the tough times, we had gone there together with Simon.
On our way out of Trolley Square, we stopped at the fountain to watch the orange carp swim about. Simon and Miriam always enjoyed doing that together. As I stood there, I felt a sense of contentment, as if Simon were there enjoying the moment along with us. Miriam approached me, and I told her I thought I was feeling Simon there. I asked her if he was "following her around" (she has told me that he follows her around, especially at school). Her reply was quite wonderful.
Miriam: "He follows me around all the time, AND he follows you around. There are a lot of spirits of Simon."That explains it, doesn't it? That's why he can come to me on a breeze, follow Miriam at school, visit with a new friend in Ann Arbor, and so on, without running out of enough Simon spirit to go around.
At bedtime, I pulled out my journal about the kids to make a note of this interaction with Miriam. This book is my "normal times" journal, the one I was keeping when Simon became sick. At that point, I felt the need for a separate space to write about that new chapter in our lives. Since then, I have written in a number of notebooks, and I seem to need different journals for different purposes. To write about last night, I needed my "normal times" book.
When I opened that journal, I found that the last entries there were made in July 2004, before Simon died. One entry recalls a trip to the Old Spaghetti Factory with Simon. As you can tell from the graphic descriptions of his condition, I was not necessarily thinking "normal times" when I wrote it. I was probably just grabbing for the nearest notebook.
While glancing through this same journal last night, I came across an entry that lightened my heart. It goes back to true "normal times", and, somehow, it seems to fit to share this memory that I read last night approximately at the same time as Patty discovered our Web site. The photo was taken during Easter weekend in late April 2000 at my Aunt Lee's house on Crystal Lake, and it shows Simon and Miriam at the time of this journal entry.
April 3, 2005 "Today I Set the Old Clock"Photos added April 5, 2005.
On the first morning of daylight savings time, when all the clocks in the house needed to be reset, I found myself standing before the antique clock. After a busy day of purging in our downstairs by Markus, this Springfield "heirloom" clock* had taken up a new place on our mantel. It has been several years since we last wound and set that clock, so it stood mutely, displaying the fixed time of 7:35.
I like the clock up on our mantel, where it can keep good company with the richly colored onyx candle holders and vase. Perhaps thinking of the onyx of Simon's burial urn, I turned to the clock and decided if it must hold a particular time, I would like to set it to 5:04, the time of Simon's death.
I saw that moving the hands backward would be a quicker trip to the desired time. But the workings distinctly told me that movement counterclockwise was not in the best interest of the clock. So, I began to work my way forward. On the hour, the clock struck a deep, gong-like chime for each hour passed. On the half-hour, it gave a cheerful single "ding" from a different bell. I worked my way through 9:00, 10:00, 11:00, 12:00.
Then I began the much quicker journey through the early hours: 1:00, 2:00, 3:00, 4:00.
As my finger pushed the clock's hand past 4:30, the little "ding" called out, reminding me of that hour in the morning of August 6th. Just minutes now, until the time that Simon died. The clock struck the hour of 5:00. Tremblingly, I pushed the hand to the point that marked four minutes past.
It is powerful. It is true. This reenactment is one of many gestures along the slow path to comprehending our loss of Simon. It requires daily practice, this understanding of what has transpired.
I am reading a useful book on child loss entitled "The Worst Loss: How Families Heal from the Death of a Child" by Barbara D. Rosof. An experienced child psychotherapist, Rosof herself has not lost a child. Rather, she has counseled many families through loss. I especially appreciate her insight into sibling loss.
Rosof is like a bereavement cheerleader. Of my painful experience with setting the clock precisely to the moment of Simon's death, she would say, "Excellent! You are working very hard to deal with your incredibly painful loss! Don't stop. Keep going. You must."
Lately, I have an almost constant feeling of constriction in my chest, like a heavy, circular brooch embedded across my sternum and settled into the adjacent ribs. It is a fairly gentle sensation, but it seems to be taking up constant residence for now. I know that the numbness of the early months is wearing off. I still wonder if I will escape altogether the crashing, debilitating sensations of acute grief. Because Simon's death was expected and gradual, we may not connect with some of the more tempestuous aspects of grief that are prominent after a sudden loss. Or maybe these wilder feelings will come after this period of numbness. Guess what? Nobody knows. We simply must live forward and attempt to steer through whatever comes next.
From Chapter 4: Why Must We Grieve?
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