December 30, 2002 "One Year Along"Today Simon is just over one year into his official ordeal with cancer. Certainly for him and the rest of us, the months of concern and diagnosis-chasing from October to December 2001 were part of ramping up for the ordeal. Last year, our Christmas stay in Oberlin was cloaked with the certainty that he had some form of malignant cancer but the uncertainty as to its exact type and location. It was an oasis-like several days with Ann and Norm that allowed us to share good cheer and a foggy sense of fear with friends Rebecca Cross (of quilt artistry fame), Randy Coleman, and their two young ones, Schuyler and Emma, and with Jane and Barbara Blodgett. The lovely times of hanging ornaments and sharing gifts and good food were punctuated by periods of extreme grown-up silence. We returned to Ann Arbor for Simon to have a CT scan on December 26, a "fishing expedition", as one doctor put it. The scan revealed a great deal to test our lingering denial-ridden hopefulness: primary abdomenal/adrenal tumor, secondary sites on the upper spine and right lung, plus metastases in bones and marrow. The revelation of this "invisible" foe explained the mysterious symptoms of Simon's limp, stiff neck, and pain. What a terrible explanation.
Our Christmas for 2002 involved another trip to Oberlin, bracketed by clinic visits in Ann Arbor. Now all but routine, Simon had a platelet transfusion on December 23. (For a look at our day in the clinic, see the STORIES FOR SIMON page and the link to the December 24 Detroit News story.) We drove to Oberlin on December 24 and celebrated Markus' birthday with David (Mary's brother), Jocelyn, Claudia (6) and Eliza (3) and Jane Blodgett.
The gift-giving continued on Christmas morning, with the four children leading the charge to find packages labeled with their own names. Simon got several computer games (in English and in German), a watch, some puzzles, and some cool stuff like bugs that change into robots. Miriam got sparkly red shoes and everything else Barbie, Kelly, and Polly doll. We ate, we made puzzles, we tripped over doll clothes, we read stories, we went sledding. Our holiday feature film was the "Wild Thornberry Adventure" (or something the that effect). In the evenings after the worn-out kids slept in bed, we had some pretty good game nights with Ann, Norm, David and Jocelyn.
Back in Ann Arbor, we're enjoying lazy days of beading and playdough. Simon's counts were good on Friday upon our return (ANC: 2.9; WBC: 3.7; Hemoglobin: 8.1; platelets: 47). Today, all his counts are down slightly (ANC: 2.3; WBC: 3.0; Hemoglobin: 7.8; platelets: 42). His hemoglobin is low enough now that they plan to transfuse red blood cells first thing Tuesday morning. Both Simon and Miriam are fighting off a cold that just won't go away: rattly cough and running nose. As I write this update, Simon, just up from his nap, is munching away at his second bowl of his current cereal favorite "Cranberry Crunch" (Health Valley). I suspect we'll go back to beading once his tummy is full.
On Thursday, January 2, Simon will have a bone marrow biopsy to conclude this round of evaluative tests post-MIBG therapy. After the doctors assess the overall health of his bone marrow as well as the status of the cancer cells in the marrow (how "normal/abnormal" do they look?), we'll be making decisions about the next course of treatment. We will continue to work on getting Simon back to good health, including his blood counts. He will not be eligible for more therapy until his platelet count is over 75 (with 150 being the bottom of the "normal" range).
December 22, 2002 "Bumps in the Road"After Simon's second full week at Kindergarten, we had a busy weekend that included fun activities like Wild Swan Theater's "The Wizard of Oz" and the Inward Bound Yoga holiday party. The previous weekend, we actually made it as a foursome to church. Both children joined their religious education classes for the first time this year, and Mary and Markus actually sat TOGETHER for the entire service. "Normal" was starting to feel pretty palpable.
So, when last Sunday evening (Dec. 17) Simon felt hot to the touch at bedtime, we were bummed to find he had a temperature of 102.5 F. He continues to receive close monitoring of his blood cell levels as he recovers from the effects of the MIBG radiation therapy he received November 5. We called the doctor, and she said we needed to bring him in through the emergency room. Well, it had been our escapade in Salt Lake City in June that Simon last needed hospitalization for a fever. We adapted to the "in-patient" mode again, if a bit rustily. It really helped to have a second car!
Simon spent an uneventful four nights in the hospital. His main complaint was a headache and some boredom. There was no sign of bacterial growth in any of the cultures grown, so he was sent home on Thursday. He continues to feel pretty icky part of the time. His hemoglobin level is quite low (8.1 on Friday, which is just above the point where transfusion is ordered). It seems he might feel better with a higher hemoglobin level, but he may still be fighting a bug, too.
During the week, Simon kept up his scheduled appointments for scans. He had a CT scan, which brought the good news that he has no new tumor masses (we certainly hope NOT). He also had an MIBG scan, now 6 weeks out from the MIBG therapy. It seems these scans remain difficult to read. However, this time the doctors are quite sure they are seeing "uptake" and "signal" more or less in all the places that were diseased before the MIBG therapy. In other words, Simon seems to have derrived little benefit from the therapy. The final call on the efficacy of this therapy will not be made until after January 2, when Simon has a bone marrow biopsy.
Markus and Mary had the sobering conversation on Friday with Dr. Yanik and, later, Dr. Mody to explore new treatment options. We have a lot to look into and learn about before the first week of January when the decisions will be made. Most likely, Simon will head back onto chemotherapy using a relatively new agent called irinotecan.
We were so hoping that Simon would be one of the children whose disease runs scared from injected radiotherapy with MIBG. There is still some small hope that we will learn of more success than currently thought after the doctors look at Simon's bone marrow. Nonetheless, it's tough to imagine heading back into chemo having already tried, so far unsuccessfully, to beat Simon's cancer with the primary "curative" therapies (the front-line high-risk neuroblastoma prototcol COG A3979, stem cell transplant, and MIBG therapy).
Christmas this week brings us to our one-year anniversary of living with Simon's cancer. We are looking forward to relaxing with family over Christmas and a time of magic and gifts for the children. Our actual plans will depend on how Simon is doing over the next couple of days. We'll keep you posted!
If you'd like to take a look back over the past year, pop over to our new Home Page Photo page.
December 6, 2002 "A Whole Week at Kindergarten; An Inconclusive Scan"We greet the weekend with gratitude for a time to rest and be together as a family. It has been a week full of adjusting to new rhythms and figuring out new tasks. Simon made it to a part of his long school-day schedule every day this week. He had clinic and scan appointments everyday but Friday, so he had to miss various parts of most days, but that hasn't diminished his excitement about being at school.
What a new world for Simon, and for the rest of us! His "Before Care" or "K-Care" program in the morning involves a mixed group of kids from two different afternoon kindergarten classes. They play, snack, read, do projects, go outside. They eat lunch around 11:15 am and march off to kindergarten classrooms at 11:45.
At kindergarten, Simon has had special experiences everyday. Monday: art class; Tuesday: gym; Wednesday: computer lab; Thursday: library time; Friday: (hmmm. . . I never asked about today). In after-care, where Simon mixes with the older kids from the school (up to 8th grade), we have found Simon in various locations at pick-up time: the gym, the auditorium, etc. So, clearly he's getting around, and he also seems to be making some new friends. All the teachers and caregivers are enthusiastic about his energy level and participation in activities. He has not turned out to be the "sick kid" that people might have imagined before meeting him.
For Miriam, having Simon in school just down the hill from Linda's house has also led to new routines. We've played around with different scenarios of who gets dropped off first. I (Mary) particularly enjoy my evening pick-up when I collect Miriam and walk with her down the hill, across the street, and through the school playground to find Simon. On these little walks, Miriam is energetic, eager to see her brother, and full of news about her day. I just love holding her hand and walking down the hill, taking in her animated stories.
Markus and I still have a thing or two to learn about packing a lunch well for Simon. We are finding daily convenience from the luxury of having two cars (again, big thanks to the Masons, whom we enjoyed seeing over Thanksgiving in Oberlin!!).
The other big part of our week was Simon's MIBG scan. You all are probably on the same pins and needles as we are, hoping for good news of vanishing disease. We heard this evening from Dr. Yanik, and he says that Simon's scans are difficult to read. They appear foggy and indistinct. There may still be "activity" (=live cancer cells taking up the MIBG compound) in the hip, but they are not sure. One possible explanation is that the scan was too close to Simon's MIBG therapy. They normally scan at 6 weeks out, but they pushed Simon up to 4 weeks out because of scheduling issues in the month of December. Dr. Yanik will speak with Lahti, the scan technician, to see when Simon's scan can be repeated. He has asked us to come meet with him on Monday.
*SIGH* It would be good to know something more definitive at this point, so we find ourselves, again, striving to be very patient. With the effort involved in obtaining the scans over a 3-day process, it's hard to think we might have to write this one off and try again. What a way to spend our time when Simon could really be at school instead!
December 2, 2002 "KINDERGARTEN!!!!!!!"
All packed up and ready to go to school!
The look on Simon's face when asked, "Are you happy to be going to school?"
Simon had his first day at kindergarten today! His first stop was the Cancer Clinic, where (ho hum) he had his blood drawn and got checked over by the doctors as part of his routine follow-up care post-MIBG therapy. Simon is at Day 96 post stem cell transplant. Because he's recovered so well, he's cleared to go to school slightly ahead of the 100-day cut-off.
Simon's blood counts aren't great, but they don't necessitate transfusions or Neupogen at this point. His platelet count is at 27,000 (where normal is 150,000-450,000). So, Mary left detailed instructions at Mack School about what to do if Simon hits his head and starts to bleed (he can't clot well with so few platelets). It wasn't exactly the "normal" way to get started at kindergarten, but, boy, did it feel good!
Simon arrived at 11:46 am, just in time to start kindergarten. Once his schedule is regularized, he'll be in K-Care in the morning before school (including lunch time), in kindergarten 11:46-2:46, and back in after-school care until we collect him. Today, the first thing his kindergarten class did was march in a line off to art class. What a great way to get started!
Simon was pretty tired out at the end of the day, but all the teachers and caregivers said he did extremely well. What a day! Now all of us will be adjusting to new rhythms of dropping off, picking up, new days of the week, new locations. It's a little discombobulating, but mostly we feel truly blessed.
WHAT'S HAPPENING ArchiveBack to WHAT'S HAPPENING main page.
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