WHAT'S HAPPENING Archive July-December 2005
December 5, 2005 "A Few Things"Thanks to everyone who has been sending healing energy our way for Miriam's broken wrist. She got her hot-pink cast removed last Wednesday, and she's quickly returning to full strength. The cast went from mid-palm to just below the elbow, so its main function was to keep the lower arm from rotating. She found that she could not do the "Junior Birdmen" eyes (thumb to forefinger in a circle, then inverted to cover the eyes) with the cast on, and she's been enjoying her ability to do that again now that the cast is gone.
While we were at Primary Children's for the fracture clinic, we stopped in the Gift Shop, one of our old haunts with Simon. We met a little baby in a stroller and her parents, and I began a delightful conversation of coos and smiles with little four-month-old Emily Lee. I spoke with her parents and learned of Emily's affliction with spinal muscular atrophy. They come to Salt Lake City from Maryland for a clinical trial run by the leading specialist on this disease. Sadly, an older daughter, Linnea, died of the same disease in September 2004.
We were speaking of our shared experience of parental bereavement when a friend from the Sharing Place walked in. She has a similar story to the Lee family, only focused on a rare heart ailment. For a moment, I felt that I could be the one to offer the hug of strength, my own troubles with a sick child resting now in memory, not hanging on the next test results.
I shared that I was there with Miriam to get a cast taken off. We all breathed relief in reminding ourselves that there are garden-variety, non-life-threatening reasons why families seek out a children's hospital.
A couple of weeks ago, I wrote the entry which follows. I recall having difficulty accessing the server to upload it, so it appears today for the first time, but retains the original date of when I wrote it. Read on!
November 21, 2005 "Caught in the Act of Having a Heart that Beats"Yesterday in church, I listened along with a roomful of folks to a prelude called "Heart Line." The piece had a note repetition figure, the speed of a heartbeat, at the beginning. It hooked me right in, and I became aware of the rhythmic beat inside of me.
From my position seated among the choir at the front of the sanctuary, I could see the faces of others. Many looked as "caught" as I felt, fully exposed in our living being-ness.
Right next to my beating heart is the place in my body where I feel the pain of my grief. It is a tightness in my chest, on either side of my sternum. It comes and goes. I was keenly aware of the coexistence of these two forces--my heart beating away into the future and my grief entrenching me in sadness of my past. For right now, I am an undeniable amalgam of both forces. They each pressure the other to make way: my beating heart wants to move past the sadness, and the sadness wants to envelope and hold still the forward motion of the heart.
It is my daily challenge to be present with both. I cannot charge ahead without paying heed to my grief. I cannot grieve in such stillness that my heart stops. We struggle throughout our lives at points where our balance is challenged. This one seems to be taking place in the core of my being.
The piece "Heart Line" ended after an expansive middle section with a quieting to the point of nothing. I watched other faces, wondering if they, too, had been in the presence of someone whose heart stopped beating. I could tell that I was not alone in the way the music brought me face to face with my aliveness and with my fear and knowledge of the fact that all hearts will one day stop beating.
The piece was composed and performed by Tristan Moore, who accompanies our church choir. I shared my thoughts with him after the service. Although he said he has never been present at the moment of someone's death, he had some of these ideas in mind as he composed the piece.
November 4, 2005 "Most Briefly"I want to share two items of note quickly today. First of all, Miriam suffered a fall while out Trick-or-Treating on Monday evening and came home most upset and complaining of pain in her arm. We spent the next several days watching her carefully, and she seemed to be improving on her own. While walking to school on Thursday, she fell again on the same arm (her right), and Markus decided to make an appointment at the pediatrician's.
Miriam and I spent a few hours up at the University of Utah Hospital yesterday determining through examination and x-ray that she has a "buckle fracture" in her right radius bone at the wrist. She has a temporary splint--a big slab of plaster-like material on both sides of her arm--to immobilize the wrist. On Wednesday next week, she'll be seen at the orthopedic clinic at Primary Children's to have the arm set in a cast.
She's taken all of this activity in stride and does not seem to be suffering much pain. She slept well with the big splint on her arm last night. With her writing hand immobilized for the time being, she'll be a little frustrated at school.
For me, the hospital setting brings up bundles of memories. Our only actual experience at the University of Utah Hospital with Simon was for one check-up in the pediatrics office and his radiation treatments in April of 2004. Still, going back into a room for x-rays, which we did countless times to check for pneumonia at the hospital in Ann Arbor and here at Primary Children's, reminds me of his extensive experience in these back hallways of medical institutions.
The second item that I want to point out is a new video in the Memories in Audio and Video section of the site. The film is from the fall of 1999, and it shows a happy Simon at play in the leaves.
October 16, 2005 "Carefully Courting Joy"If I had to put a name to this phase of my grieving, I would call it something like "settling in". The facts of the situation have not changed. Simon was very sick, and then he died. We live on. I found myself writing to friends this evening that "living on without Simon is as unthinkable as it is unavoidable."
Amid the tumult (mostly inner) of recent months, I find myself drifting through countless moods, ranging from blank to contented, from a desire for a simplicity near nothingness to rekindling of intrigue, from deepest sad-aching to delight at a new trick from Miriam. No mood seems to last with any predictability.
Markus is engrossed in teaching and other professorial activities. He's also doing more with his violin and will be the soloist at church services on Sunday, October 30. Miriam is engaged at school, spewing out her newly learned phonics for the letters and words she encounters. She keeps busy with her soccer team, various birthday parties, and playdates.
I am active on the music committee at church and recently performed a full-length concert of songs by Gershwin, Kern, and Porter (25 songs, to be precise). It went quite well, and I got some rewarding comments on my musicality and theatricality. I am already beginning to work on the next project, which will be an evening of treats from fin-de-siécle Vienna featuring operetta arias of the day. Markus will be joining that program on the violin. As we did last year, our church music director, David Owens, and I have auctioned off the event as part of the church's annual fundraiser. I am humbled to report that the Evening in Vienna (which will take place in April 2006) sold for $160 per ticket to a total of 15 guests!
My little German class is going just fine at the Salt Lake Arts Academy, and I am there four mornings per week from 7:50 to 8:25 am. I have been using some of the rest of my time for writing, and I am currently attempting to adapt my account of Simon's day in surgery on July 3, 2002 into a creative essay for possible submission to an upcoming anthology of women's experience with the medical world (see arewefeelingbetteryet.com). As I work on my writing, I have a jumbled feeling of having a lot of material to work from but not necessarily knowing the thread.
The moon will be full tomorrow evening for the 15th time since Simon died. Tonight I can see it through our skylights again after many months where it has crossed much lower in the sky. It is silvery and gleaming. We have had beautiful, clear weather and continue to feast our eyes on the colors of fall against the blue, blue sky.
Our remodeling project in the house is redoing the walls in our TV room (which is also a second guest room). A leaking pipe precipitated the project about five weeks ago, and now we, too, know something about the home improvement project that seems to have no end. Markus is the main worker, but I help, too. We've got the new dry wall up, and he's patched and smoothed the other walls. But then we decided to fix the broken sash cords in the windows, and now we have all the window trim pried off and are working on prepping that for paining. And so on. We've chosen a light golden yellow color for the walls.
The new wall color for this unsunny room is an attempt to bring in the color of Simon's favorite votive candle: the joy candle. It seems a good choice for the room and a fitting way to build in a memory of Simon. During his last couple of months, he liked to burn these candles as he sat and watched TV, read stories, or just sat and rested. Sometimes he chose love (pink) or courage (a bloodlike orange-red), but mostly he chose joy (yellow-orange).
I had been keeping a joy candle on hand, waiting for the moment when I felt strong enough to light one again. As we were looking at the candle and the paint chips last week, I found a way to light the candle. Our current Simon candle, still on the altar table in our dining room, is a large magenta pillar, just like the ones we used at his services. This particular candle had hollowed itself out and burned down, leaving three-inch walls of magenta wax. I decided I would be able to set the yellow joy candle inside the hollow Simon candle. Miriam and Markus joined me, and we lit our first joy candle together since Simon died, encased by the big, symbolic Simon candle.
A few days later, Miriam asked to light one in the white onyx votive holder that Simon had used. And we did that, too.
Do I feel joy? I don't know. I did have an arresting thought recently, though, that if I was able to experience such intense joy with Simon in my life, is there really anything that prevents me from finding that feeling again, even though he is gone? That kind of thought belongs to a brave mood. As I said, no mood lasts for long, but I try to grasp the good ones as they swing by.
September 30, 2005 "Quick, Better Update Before Another Month Is Gone!"Markus, Miriam and I spent the late afternoon exploring the autumn landscape of the Wasatch Mountain Range. Heading due east out Emigration Canyon, we wound past Ruth's Diner (a place we've enjoyed eating but haven't returned to since they refused to help us with a no-wait table when I made a special request for Simon and all his cousins in June of 2004--Simon was not in any frame of mind to wait at a restaurant, but the person who took my call said, "I'm sorry, Ma'am, but there's nothing we can do"). Further up the canyon, we passed the hill that we had found for sledding back in the snowy months of 2003.
At the summit, we found the parking area that we had visited twice before on starry nights. The first time was in June of 2002 when we were in Park City for Markus to attend a conference. We had driven into Salt Lake City for dinner at the home of our minister-to-be Tom Goldsmith and Mary Tull. They gave us insider directions to get us back to Park City via Emigration Canyon so we could stop and see the stars. The kids were asleep in the car, and Markus and I took in the view. The second visit was in August of 2004, shortly after Simon died. We were coming home from Park City with my parents, and we all stopped to gaze. Miriam was awake this time, and she made a precious comment about thinking whenever she saw a falling star that it would be a kiss from her brother.
After passing the familiar landmarks, we headed out East Canyon into territory that was new to us. We saw the Mountain Dell Reservoir and headed up to Big Mountain Pass. We parked there to take a short hike on a trail up to Big Mountain. Although Miriam voiced a penetrating wish at repeated intervals that she wanted to turn around, she stuck it out and reached the top of our hike.
We were dazzled by the colors covering the hills. There are pink-reds of the maples, brown-reds of the brush oak, deep greens of the evergreens, golden yellows of the aspen that have turned and bright green of the aspen that are still to turn. The colors cluster in the more protected gullies of the mountain range. Some areas are covered with a silvery straw-grass. And the grey-green of the sagebrush intermingles with the vibrant colors. Setting all of it off is that Utah blue sky.
Markus took several photographs, but we have switched back to our old 35mm film camera since our digital camera quit working in June, and we haven't managed to have it serviced yet. To give you a flavor of the foliage, I found the Web site of a Park City photographer using Google. We do not have any connection to David Whitten, but he's taken some beautiful photos. Here's a link.
It felt very good to be out in nature today as a threesome. For about a week, I have been glancing up at the mountains and noticing the shocks of vivid pink and red. It slowly occurred to me that we could drive up there and take a look around to see what makes the colors. From a distance, the patches of color seem to come from little bushes on rolling grassy (or brownish) hills. Up close, we can see that the color comes from brush and trees and that the hills are more tree-covered than they appear from a distance. The reds jump out. The golds of the aspen are at higher elevations and don't show as much in the lower foothills that we can see from town.
Life has been busy and challenging. Markus is teaching the evening MBA program this fall, and he has two sections of the core management course. Each class meets once a week from 6:00-10:00 pm. He does that on Wednesdays and Thursdays. Miriam and I miss him at home! The evening MBA courses run for 10 weeks, so we are glad now that there are only four more weeks to go.
Miriam has had a whole month of kindergarten. She is doing well, and she is managing her full days at school like a pro. She spends the mornings in the enrichment classroom with other kindergarteners, and then she goes to her "real" kindergarten from 12:15-3:00 pm. Adjusting back to being parents of a Uintah student has been hard at moments. We were able to spend the first year since Simon's death without regular contact with his school. Now we are there every day, and it brings up many memories.
Miriam has also begun to attend a group with other bereaved children at The Sharing Place. She goes every other week on Wednesday mornings. One other child has experienced sibling loss, and the others have had a parent die. The program involves group sharing time to talk about the loved one that died. Then the kids go off to play wherever they want in the areas set up at the house. There's a "Volcano Room" for pounding out feelings on pillows and padded walls. There's a medical play area. Dress-ups. And so on. Miriam seems to be doing well there.
For the parents (in this case, all are moms), there is a group that happens simultaneously. With the help of a facilitator, we go around and share how we are doing. This past week, we honored Simon and another child because it is fairly close the anniversary of their deaths. I shared photos and programs from our memorial services for him. I am finding a lot of sad feelings at this point, and being in a grief group is helping to stir them up again. I think it's important, but I'm not finding it easy.
In general, I am finding my grief to be more intense now. I have made it through one year, and I spent that year more or less officially in mourning. I am slowly taking on more and more activities, and I find each step a challenge to my overall balance.
Two weeks ago, I took a "micro-job" as the German teacher at a downtown charter school called the Salt Lake Arts Academy, which is a middle school. My students range from 5th to 8th grade. Some are brand new to German, and some have had a class at the school for one or two years. I have 11 students, and I see them 7:50-8:25 am Monday through Thursday. For a small commitment, it has been a pretty big adjustment. Markus is now taking Miriam to school on those mornings, and I am ready for the rest of my day after 8:30 am.
Yesterday, I incorporated another part of my new schedule. I went to the beautiful downtown public library, which is just 2 blocks south of the school. I met up with a writer friend from the workshop I attended in June. She and several others meet there to write side by side and babysit each others' computers during bathroom breaks. I spent three hours WRITING.
I have a number of writing ideas, and I have been wondering where to start. I spent the time yesterday trying to reconstruct the fall of 2001 to set the context for a possible article about Simon's life with cancer. I find my recollections blurry about our lives that fall--what were the kids like? who were they playing with? what did we do for fun as a family? Then there are certain dates that are carved indelibly. The first was November 14th, the day Simon was first seen by an orthopedist. On November 15th, our beloved Oberlin neighbor Jeff Blodgett died of prostate cancer. That's as far as I got, but I believe I will remember most of Simon's other appointments that November and December without needing to look anything up in his medical records. It's like a catechism that I can repeat without thinking.
As I thought about it, I remembered that Simon was playing a lot that fall with his neighbor Andre. He was probably riding a two-wheeler with training wheels. I imagine we liked to go to the Ann Arbor Farmer's Market and the Hands-On Museum. We drove to Oberlin for visits fairly often.
I looked this evening in the journal I was keeping about the kids at that time. It is almost empty, except for some comments around September 11th and then a gap until May of 2002. I didn't find any hints about when Simon's limping began, or what I was thinking at the time. But I did find two gems that I wanted to share.
(My recollection of the fall of 2001 is that the kids were sleeping in a bunk bed, Miriam below and Simon on top. I wonder what I meant that I found them sometimes "together and entwined"?)
August 30, 2005 "Miriam's Perspective"I now have two rather lengthy, but incomplete, entries for this page. One is from August 25th and the other from August 16th. Probably they are "almost done", but it's been so long now that I will need to find alert daylight hours to review them and post the content. Those hours are indeed in sight. Miriam starts kindergarten tomorrow! She is delightedly excited, and I am looking at 6-hour stretches of time to hunker down and do some writing. I guess I'm also delightedly excited.
We are pleased to have Miriam heading off to kindergarten at Uintah Elementary, which is the same neighborhood school that Simon attended for first grade. We will soon be back in the routine of walking the four blocks north, two blocks east, to get her there in the morning and collect her at the end of the day. She will be attending a kindergarten enrichment program in the mornings, eating lunch, and going into her kindergarten class 12:15-3:00 pm. The set-up reminds us of Simon's kindergarten year at Ann Arbor Open School 2002-2003.
I really think she's ready for school and all that it entails, including the lengthier separation from parents and home. She's also really ready to take on her alphabet and the other tasks of early learning.
Yesterday, she made a stunning argument to me about her desire to purchase a lunch box of her own. Up until now, she has occasionally used Simon's lunch box, which is a plain lavender item from Land's End (dependable zippers). She has been lobbying for a lunch box with Barbie or Bratz or something on it, and you can get them at Toys-R-Us! Then she said to me, "Mom, if Simon didn't die, then he'd be using his lunch box, and I could get my own." Yikes, is she accusing me of limiting her originality solely because she's the younger sister of a boy who died?
Well, we still think there's a lot to be said for the economies of using what we already have instead of buying something new. Markus and I agreed it would be fine for Miriam to buy a new lunch box with her pocket money. I took her to Toys-R-Us, where she found a Barbie-pink item with an image of Barbie herself on the front. Hovering around the design of the lunch box are also several brown dragonflies. Miriam and I both noted the dragonflies as a reminder to us of Simon. We had seen an especially active, brown-colored dragonfly just the evening before. It seems we can always picture Simon flitting about in the motions of a dragonfly, particularly such an impressive and goofy one as we saw last night.
So, Miriam will head tomorrow with a lunch box that bears her own style and also carries a reminder of her big brother. She wishes he could go to school with her and walk her home.
At bedtime tonight she asked me if I am ever going to leave her world. I told her, no, I won't. We talked a bit more about how, even after I die, I'll still be part of her world, just as Simon is with us now. Oh, the things she already knows as she heads off for her first formal schooling tomorrow morning.
July 21, 2005 "Four Years Ago"Four years ago was July 2001. I had just begun to take a yoga class in Ann Arbor for the first time. We spent a week up in Frankfort, Michigan along with our extended Craig family. A few miles up the road at Crystal Lake, our further extended Williams family was gathered. It was a time of dune crawling, marshmallow roasting, and swimming. I remember doing the Kids' Yoga tape with a bunch of the kids. We swapped houses for evening meals with the whole clan.
Simon had turned four in May of 2001. Miriam was about to turn two in September. Here's what they looked like that summer.
I still have the drawing Simon made with highlighters on copier paper in my office the morning of September 11th. I remember trying to finalize details of a ticket deal for undergraduates. I called one of my contacts, who apologized for being distracted by the events at the World Trade Center on the television outside his office. What's going on at the World Trade Center? I asked.
Later that morning, after Simon saw a big-screen TV with images of airplanes crashing into tall buildings, I explained that a lot of people had been hurt when that happened and it was a very sad thing. What an eerie time ensued, with anything that had been a plan just moments before crumbling in the wake of the tragedy or at least undergoing major realignment as the world responded to 9/11.
Later that fall, my office at Michigan--Arts at Michigan--led an action response to 9/11 and held a bulb planting for peace. US-led military action hadn't gone far into Afghanistan yet, and we wanted to encourage a mindset for peace and a reminder of the losses of the Trade Center bombings. In an open area along a well-used pathway, we planted 2,000 daffodil bulbs, soliciting volunteers to help us plant as they walked past. In the spring of 2002, the daffodils bloomed beautifully.
Four years ago, Simon did not have cancer. Perhaps he did, but he certainly had no knowledge of his disease. It was a few weeks after 9/11 that we noticed his limping and began the diagnostic quest that led to confirmation of neuroblastoma the day after Christmas.
Four years ago, our country and world did not imagine an event like 9/11. Four years ago, I would never have dreamed that my vigorous son Simon was beginning to grow a deadly tumor.
I am grateful for the way yoga fit itself into my life in the summer of 2001. I remember going to class on September 11th (maybe it was the 12th), bringing that sense of shock to a room filled with others willing to suspend tragedy long enough to be in the moment of the yoga.
Yoga continues to keep me somewhere, and it's a place from which I can try to assimilate the enormity of losing Simon. Sometimes it can unlock my sadness. Mostly, it is a place where I can be OK--apart from judgment, time, desire. It is a place where I can breathe and send out my own life energy--that tiny part of the hugeness that seems to be my own.
Tonight the moon is full for the twelfth time since Simon died. It is just two weeks now until we reach again the day that Simon's breathing stopped: August 6th. I like to use yoga, thinking, breathing, dreaming, the flitting of a butterfly--anything--to feel again the splendidness of Simon, to know the life force he cast into the world and entrusted us to hold alive within ourselves now that he is gone.
Namaste, Simon. Namaste.
[One translation of the "namaste" greeting is: "the light in me bows to the light in you."]
July 6, 2005 "Eleven Months Today"Miriam has been playing a lot recently with our neighbor, Adrian. He'll be in first grade at the same school in the fall that Miriam will start kindergarten (Simon's old school), although their age difference is less than half a year. They make a fun pair, Miriam with her leggy height for almost-six and Adrian with his delicate petiteness. Over the weekend, we built Simon's Playmobil train, and they have been playing with it almost daily ever since.
Miriam's recollections of Simon seem to be quite stirred up. She knows it's nearly a year now since he died. She misses him. She's finding it very difficult to start day camp at the Jewish Community Center this week. We think she's trying to go along with the plan (three weeks, swimming every day, camp from 9am to 4 pm), but she's struggled tremendously. It's a big camp, all in a pretty small charter school building. There are older boys, friends of Simon, and I wonder if they are triggering memories. Miriam is in the group of Girls Six (the youngest kids at this camp). Today she fell apart before leaving and ended up staying at home all day. In her turmoil, she told me how much she misses Simon. I wondered what it would be like to send both of them to camp. Simon could be in Boys Eight with Miriam in Girls Six. I think she would feel safe knowing her brother was with her.
We really hope she'll give it a good try again tomorrow (day 3). Day one was hard because we were up late the night before for the fireworks. If you are the hoping type, please send some good vibes to Miriam to help her feel safe, curious, and adventuresome for camp tomorrow. Otherwise, she'll have to spend another day at home while I ignore her as I go about my business, no TV, no friends, no treats. Just the lunch we packed for camp. It was amazing how well she entertained herself all day today.
This evening, we went with Adrian's family to observe the 11-month mark since Simon died. We took them (Don and Sylvia are his parents) to the cemetery, where we inhaled deeply the scent of the linden trees in full bloom. It is a peaceful place, and Adrian (who also knew Simon) had asked to go there. Miriam had a lot of recollections of Simon's dying to share with Adrian. She described how Simon's mouth got too sore for eating and all he could have was ice chips. That he couldn't move. That he needed to wear a diaper. That his whole body got burned up, even his eyes, when he was cremated. I was impressed at how much detail was emerging.
I think Adrian has felt a bit like having a brother again, so Miriam is feeling more intensely that Simon is gone. I think she needs a peer to tell her story to. I think a co-ed camp that is not primarily girly, like most of her other recent experiences, is challenging her aloneness and her feelings of abandonment by the most important boy in her life. I think it's very heavy stuff.
I have spent a lot of time in the past week looking at photos and writing about Simon's Celebration of Life party, which was held July 1, 2004. If you haven't taken a look yet, please do. The write up, with links to the photos, is in REMINISCENSES.
The passage of time is inescapable. The other day, we were looking at Miriam's winter boots to take along in case we saw snow on a hike. Markus found another pair of snowboots: dark blue with orange trim. "These were Simon's boots," I said, "from last winter." Then I stopped and corrected myself. "Last winter" was 2004/2005. It was our first winter without Simon. I corrected myself by saying, "The last winter that Simon was alive." And it turns out, we bought Miriam new boots this past winter, and those boots are the same exact size and style (not color) as Simon's last boots. So, if we had figured it out, Miriam wouldn't have needed new boots.
But we can hardly expect ourselves to stay on top of that kind of thing. Miriam now weighs more than Simon ever weighed. She'll have outgrown his last boots (and her own current pair) by the time the next snow falls. He was pretty small, compared to her robust size. When I carry her I know I have never before carried a child of mine that was this heavy, even if she did have a big brother. Inevitably, she is passing him by. We cheer her on with tremendous pride. We struggle with our disbelief that her big brother is no longer "bigger" than she is.
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