WHAT'S HAPPENING Archive April 2005

April 19, 2005 "A Trip to Denver"

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.

Mary with the Locklers and friends.

Eleven balloons waft skyward. (Colors enhanced for you to see! The blue one is for Simon.)

Catching our breath, Mary and Theresa, cancer-moms.	Byron flexes his muscles.

April 7, 2005 "Some Interesting Intersections"

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.

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.

July 17, 2004 I made a quick flip photo display of 36 photos from Simon's early years. What a dazzling child. He is wretched looking now. His body grows frail. His eyes are stretched and bulging from tumors that press from behind. His lips are purple from bruising. There are growths that we can see appearing on his left jaw, on his right temple, out the top of his head. It is awful. This evening we went, at Simon's request, to the Spaghetti Factory for dinner. That was followed by getting caramel apples at the chocolate shop. Simon was very involved, and he looked forward to each step. Of course, he was uncomfortable, too. He needed a warm wash cloth or a hand on his sore right eye. His neck hurt at one point. We left Trolley Square in a major downpour. Many streets were filled with gushing water. Quite an unaccustomed sight. I will go to bed now, next to Simon. He seemed to be sleeping well so far. He's on steroids since yesterday, which has rekindled his appetite. We do our best to chase down his requests. His nausea has been quiet for a couple of days. That is a relief, if a small one in the context of Simon's rapid decline."

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.

May 9, 2000 "I love you, too" I was putting Simon to bed this evening, and Markus had a tired and unhappy Miriam with him in the bedroom and downstairs. She's teething and running a fever (102-103 degrees rectal). I could hear her piteous cries, so I rushed through stories with Simon and said we had to have a really quick "drinky". He complied, also noting "I not hurt your drinky"--since sometimes he bites at the end. We pulled up his blanket, and I began a quick "Hush Little Baby". I said I could only sing one song. I reviewed the nice moments of the day: Our music class at home, our talk after his nap, and the nice chocolate he picked out for dessert--it was delicious. Then I hurriedly said "I love you" and said I'd have to leave and he could call if he needed anything. I went off to find Miriam, who was by then sleeping sweetly in Markus' arms. I heard Simon calling, so I went back to hear what was on his mind. His voice was a little tired, a little whining. I went in and asked, "Simon, what is it?" "I love you, too," he grunted, ready to settle in for the night. My heard melted, and I gave him another kiss and said I love him so much, too. What a thunderstorm outside! This story falls about two months before I weaned Simon. At that point, I was "tandem" nursing both children. Simon was almost three, and his nursing was limited to bedtime and wake-up time. Miriam, then about seven months, was almost exclusively breastfed. The term "drinky" came from Simon. When he was really little, he began to say "ginky" in response to my phrase, "Do you want a drink?" As his language progressed, he began to say "grinky" and, finally, "drinky". I imagine the chocolate I referred to was colorfully wrapped Lindt chocolate balls. They were always enticingly displayed at a nearby market, and I often let Simon pick out one for each of us. He liked to set them out at the table to make it look nice for dinner.

April 3, 2005 "Today I Set the Old Clock"

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?

"Often you will remember your child when you choose to, spending time that is both comfort and pain, replaying the time you had together. Sometimes you will want to remember her in the privacy of your own thoughts and alone, and sometimes you will want to share your memories of her, especially with the people who knew her. Your child's possessions, photographs and videos of her, songs and smells and special places all bring back the memories. Take the time. Spend the hour in her room. Look at the things that remind you of her. The remembering helps you with the work of releasing love and of holding on to what you can keep. In the first year or two after your child has died, remembering her will be the center of your days and of your life. It needs to be this way. It is through the remembering that, slowly, you will allow your head and heart to know what has happened to you. This is the central work of grieving. Only as you do a great deal of this work, over more time than you imagined, can you lift your eyes to what else might enter your life." (Rosof, pp. 54-55)

WHAT'S HAPPENING Archive

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.

In 2006, entries on this page became sporadic. We named a ski run "Simon's Way". Miriam went to first grade. In December, she reached the point of being older than Simon was when he died.
2006

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.
July-December 2005

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.
May-June 2005

Acts of mourning continue as life also moves forward. Mary travels to Denver and meets the bereaved family of Becca Lockler.
April 2005

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.
February and March 2005

Working through grief; working on life; trying a few new things.
January 2005

Approaching "the holidays" without Simon and marking time with the moon.
December 2004

Our fourth month without our dear Simon included a busy and rewarding celebration of Simon's legacy with the music duo, Gemini.
November 2004

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.
October 2004

Life without Simon creeps along.
September 2004

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.
August 2004

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.
July 2004

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.
June 2004

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!
May 2004

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.
April 2004

Chemo abandoned after further progression; begin CEP-701 phase I clinical trial at UCSF
March 2004

More chemo (round 2 topotecan/cytoxan)
February 2004

Disease progression (widespread in skeleton) discovered during work-up at Memorial Sloan Kettering Cancer Center; begin salvage chemo with topotecan/cytoxan
January 2004

Begin accutane (vitamin A derrivative to fight neuroblastoma); consultation with Dr. Kate Matthay at UCSF
December 2003

ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
November 2003
October 2003

Irinotecan/vincristine at home
September 2003

ITP chaos
August 2003

Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
July 2003

3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
June 2003
May 2003

Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
April 2003

Irinotecan/vincristine in the treat then evaluate mode
March 2003
February 2003

Still recovering from MIBG therapy
January 2003

Finally starting kindergarten!
December 2002

MIBG therapy
November 2002

Recovering from transplant
October 2002

Stem cell transplant
September 2002
August 2002

Surgery
July 2002

Several months of topotecan/cytoxan in the treat, scan, evaluate mode
June 2002
May 2002
April 2002

Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
March 2002

Stem cell harvest (to be purged)
February 2002

Diagnosis and starting treatment
December 2001/January 2002