January 26, 2003 "Ready for More Chemo?"Simon's bloodwork showed more improvement last Monday, January 20. His platelet count was 53. Markus and Mary spoke at length with Dr. Mody and Dr. Chao about the next course of treatment. After 6 months in the care of the bone marrow transplant team under Dr. Yanik, we feel something of a "homecoming" in returning to the physicians who diagnosed Simon in December 2001 and have served as his primary oncologists.
In the expectation that Simon's platelet count will be "close enough" to 75 by tomorrow, we are scheduled to take him in for chemotherapy. He will be on a regimen of irinotecan and vincristine. Irinotecan is in the same drug family as topotecan, which Simon received April-August 2002. Vincristine was part of the first protocol Simon followed. One can cause severe diarhea. The other severe constipation. We'll have to see how it goes for Simon.
Simon will receive the chemo by infusion through his central line, outpatient. We anticipate infusion time of about 3 hours per day. Here's the plan:
Days 2-5: Irinotecan
Day 8: Vincristine
How is Simon doing? Fabulously well! He looks great, as anyone who sees him would attest. His hair is growing in thick and pretty straight. He loves school, enjoying the things he is learning and the active social interaction. How does he feel about more chemo? Not too thrilled about losing his hair again. That's a change. He didn't use to care about his hair status. I imagine it's such a topic of commentary, now that he has hair, that he'd rather not have it draw so much attention.
Grann and Grandad visited for the weekend. They collected Simon mid-morning on Friday after a short schoolday for teacher in-service. Simon reported at the end of the day, "I had a whole day with Grann and Grandad!" One of the fun things they did was to build more airplanes from the book Simon received last week from Jean Drummond Watson and her son Alex. Thanks for a great gift!
January 19, 2003 "Not Much Change"We continue to monitor Simon's blood count recovery. It's slow going. The "hit" to his system occurred way back on November 4, when Simon received MIBG radiation therapy. Two and a half months later, his blood counts are still well below normal, especially the platelets (see below). Although this is a slower, flatter bone marrow recovery curve than Simon has experienced in other contexts (chemo, transplant), our doctors reassure us that this recovery pace is "standard."
Simon will see Dr. Mody again Monday morning. He is transitioning away from the Bone Marrow Transplant team, which has followed him since August for both stem cell transplant and MIBG therapy. Dr. Mody (Simon's primary oncologist and diagnosing physician) and Dr. Yanik have been in constant contact over Simon's case, and we expect that they will continue to collaborate on Simon's care. We will discuss next steps for Simon: cis-retinoic acid? chemo once his platelet count is higher? etc.
Simon has been enjoying school and other activities. He is eating well and looking and feeling strong. Markus and Mary are working on a schedule shift to enable us to bring Simon home earlier from school. Kindergarten lets out at 2:45 pm, followed by the busy 80-child, multi-age "After Care" program. Although Simon is totally stimulated by the chance to play with kids all afternoon and run around wildly in the gym, he's exhausted by the end of the day. We are trying to heed advice from Dr. Molly McMullen (Simon's anthroposophical doctor) to preserve more time for him to rest.
Blood Counts 1/16/03:
[WBC (white blood cells; infection-fighters) normal range: 4.5-13.5 K/MM3
January 8, 2003 "A Pretty Good Biopsy Report"We heard yesterday from Dr. Yanik that Simon's bone marrow biopsy indeed showed evidence of disease, but also had a number of favorable aspects. Since no neuroblastoma cells were detected in the liquid marrow, it appears that remaining disease is clinging to the bones rather than crowding the marrow space. That's a good thing because it leaves room for healthy cells to replace damaged marrow cells. The cancer cells they found in the biopsy looked "patchy", with plenty of healthy cells growing in around them. And the cells are "differentiating", which means they are less malignant than non-differentiating cells.
What does this report mean for Simon? It means he still has cancer, and it's considered stable disease. We will continue to watch his blood counts for recovery and/or the need for interventions, such as transfusions and the still somewhat possible need for a stem cell rescue. Simon will be monitored twice weekly. Dr. Yanik expects his marrow to recover in the next week or two.
Simon's results are good enough to rule out the need for immediate chemo, allowing him time for his body to recover as fully as possible from the effects of the MIBG radiation therapy. We would certainly love to hear that his body is clean as a whistle, but clearly he will need to stay on the treatment treadmill to make further inroads against his stubborn cancer.
Meanwhile, he's back in school and enjoying the interaction with new friends and subjects of learning. Today he and Miriam went with Markus to their new "Yoga for Kids" class at Inward Bound Yoga in Ann Arbor.
January 3, 2003 "Happy New Year!"We had great, encouraging news today on preliminary results of Simon's bone marrow test, which was performed yesterday. The liquid portion of the sample (the marrow) was examined under a microscope and found to contain no neuroblastoma cells. The marrow appears to contain many young, healthy blood cells. The doctors need until Monday to examine the bone sample also taken as a biopsy to see if they find evidence of disease there. After hearing the news two weeks ago that Simon's MIBG scan still "lit up" to indicate active neuroblastoma in all the same places despite the MIBG radiation therapy, it's a little hard to know what a clean bone marrow sample means. In any case, we take it as the best possible sign we could get right now. (You may recall the description several months back about buckets of sand and how to interpret bone marrow tests. If you missed it, or want to see it again, go to WHAT'S HAPPENING Archive June 2002.)
We certainly seem to be getting used to the testing and the waiting (which is a good thing, since families sometimes deal with neuroblastoma for many years--one amazing teenage friend from the Cancer Center is in his 9th year of fighting the disease). As I shrugged it off yesterday to Linda (Simon and Miriam's long-time daycare provider), she put her hand to her forehead and recalled how riled up we all were a year ago when Simon had his first bone marrow aspirate ("to rule out leukemia"). It seems a matter of course now to keep him off food all morning, hold him while he is injected via his line with propofol (his "sleep medicine"), lay him carefully down on the bed for the procedure, leave the room for 20 minutes or so, come to the recovery area to welcome him gently back to consciousness, remove the bandages over the twin poke holes on either side of his lower back about 24 hours later, and wait to hear what the doctors have found. Even Simon thinks it's no big deal. In fact, as he finished his lime jello heart (an allowable "clear liquid" until 3 hours prior to the anesthesia), he cheerfully looked at the bright side:
Simon: "I can run around, or ride my bike, or do lots of things, even if I can't eat. It won't be too long, and then I can eat afterward."
Simon's wonderful capacity for cheerfulness does not mean he's immune from spells of total breakdown and upset. We can tell he's fighting hard physically when he loses it big time, especially over disappointments like not getting the exact food he wants to eat. He cries, screams about the unfairness, and despairs that no one cares about him (or if they did, they'd be getting him/buying him/allowing him that thing that he asked for!!!). His upsets often taper off into a tired collapse (like putting his head down on the dinner table). Then he says, "I don't feel good!!" And we know he must feel pretty awful and worn out.
On Saturday we'll take Simon to the 7th floor at Mott to have the nursing staff take a blood sample and check his platelet level. He is still considered transfusion-dependent, and they don't want to wait until Monday to check him again. Yesterday's counts were ANC: 1.6; WBC: 2.2; Hemoglobin: 10.5; platelets: 32. We're rooting for a decisive blood count recovery, and soon, so that Simon can be eligible again for therapy to keep his cancer in check (accutane, antibody, chemo, etc.) and eventually get his cancer in checkmate! He's still sliding down again after transfusions and occasional neupogen injections, but it seems to be less of a downslide each time. It appears that Simon will recover from the myelosuppression of his MIBG therapy without needing a stem-cell rescue. Go new little marrow cells, go!
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