WHAT'S HAPPENING Archive March 2003
March 27, 2003 "Good Signs; More Chemo Next Week"We heard from Dr. Mody yesterday with the final results on Simon's bone marrow biopsy. The good news is that there was no sign of neuroblastoma in his marrow or on the bone biopsy. That's an improvement over the "patchy involvement" still seen in early January. So, the signs indicate that this chemo (irinotecan/vincristine) is working. Dr. Mody also consulted with Dr. Yanik, whose own reading of last week's MIBG scan was that it is looking somewhat better, even if the official radiology report is "unchanged". Both doctors are in agreement that Simon should have another two cycles of irinotecan/vincristine and be reevaluated after that.
Simon's immune system is definitely taxed by all that it's facing. Dr. Mody believes his bone marrow has been weakened by his transplant last fall, thus requiring a lengthier recovery period after chemotherapy. The biopsy indicates a marrow that has a lower number of cells than normal. Fortunately, they don't appear to be crowded out by cancer cells. Rather, the marrow is simply thinned out after being hit so many times by chemo plus MIBG therapy. A full recovery from transplant is not expected before a year after the transplant, and Simon is now about 7 months out.
We are relieved that there are enough positive signs to keep Simon on his current course of chemo, with the hope that the cancer lingering in his bones can be killed off by further treatment. We are sobered by the fact that his marrow is not as resilient as it once was.
We expect Simon to begin the next round of chemo on Monday, assuming his counts are high enough: 75,000 platelets and an absolute neutrophil count over 1000. As of yesterday (Wedesnday), he was at 64,000 platelets and an ANC of 500. Even with the white-cell stimulator neupogen, Simon's ANC has recovered slowly this time around.
Simon finally returned to school today. He didn't make it too often in the month of March. As always, he's very stimulated by seeing all his friends at school and by learning new things. And then he's pretty tired out at the end of the day.
March 21, 2003 "Done for Now"Simon's wake-up after his bone marrow biopsy this afternoon was a little ragged. It didn't help that his appointment for this brief procedure was delayed by 2 hours. It's rough to spend a day not eating after 7:00 am, and then to wait from 1:00 pm to 3:00 pm for a procedure with anesthesia.
But he perked up fast when we got home. A good lunch of "Bunny Noodles", no matter how late, works wonders. ["Bunny Noodles" refers to the Annie's brand pasta product. Simon had peace noodles today.]
After dinner Simon had some fun with his calculator. There are new photos (can you believe it?!?!) in the PHOTO GALLERY.
We will have to wait until next week for results on Simon's MIBG scan and bone marrow biopsy. Dr. Mody called to say that the preliminary reading of Simon's CT scan is that things are "stable". That's good news, since appears there are no new tumors.
So, we'll relax and have a weekend. Simon sees Dr. Mody on Monday afternoon, and we'll know more then.
March 20, 2003 "Scans this Week and Welcoming Spring"On this first day of Spring, Miriam is officially three and a half!
Simon is near the end of a week of scans and tests. Tomorrow's bone marrow biopsy is the last test after MIBG and CT scans. We do not yet have any results, so we're pretty anxious to hear. The purpose of the tests as this point is to evaluate the effect of two cycles of irinotecan/vincristine chemotherapy.
Simon has been doing OK, but not great with this chemo. He's been in the hospital after each cycle with a fever. His hospital stay in February was only one night, and he went home with a prescription for an oral antibiotic for an ear infection. (Remember the chicken pox scare? We think he got to go home fast to keep possible virus bugs out of the hospital!)
This time around, Simon spiked a fever of 102.4 F on Day 9 of the chemo cycle. Markus took him in to the emergency room, and he was admitted. Simon was neutropenic (an aboslute neutrophil count below 500), he had a cough, and his x-ray seemed to show some cloudiness in his lung. He was feeling pretty good, though, and the fever was gone overnight. So, we thought he'd be sent home quickly, as in the past. But that was not the case. His counts continued to drop, he continued to feel fine, and the doctors continued to want him inpatient for observation. The possibility of pneumonia is a grave one, and that led the doctors to keep our healthy-feeling Simon in the hospital for 5 nights this time. Simon came home on Sunday afternoon.
Simon has not been able to go to school this week because his counts remain too low. He's had a busy schedule at the hospital for his scans, and his ANC shot up to 4800 today. That means he can stop getting neupogen injections and stop receiving IV antibiotics (a continuing precaution after his pneumonia scare). Yay!
We expect the next several days to be a time of decision-making. Simon's platelet count is currently 35, so chemo on Monday may or may not be possible (Dr. Mody likes to see 75 to start chemo). If the scans show some progress against the cancer, then we expect Simon to continue on the same regimen. If the results are less favorable, we will probably be looking at other options.
We'll try to keep you posted! Thanks for checking, and thanks for the gentle reminders when it's time to update!
Living with a sense of peril, as we do with Simon's cancer, colors life in many ways. My heart goes out to all who face peril and the threat of destruction in Iraq.
March 2, 2003 "Back In Gear"It's the end of a week off for the Ann Arbor schools. Simon was not ready for chemo again at the 3-week point last week because his counts were still too low. We were lucky to get a slot for him all week at Linda's house with Miriam. They both seemed to enjoy the time and are playing well together at home, too.
We expect Simon's counts to be OK for chemo tomorrow, since he was in good shape on Thursday last week (WBC: 3.1, Hemoglobin 10.5, Platelets 74, Absolute Neutrophil Count 1200). We plan to take him to school for the morning "before care" session, followed by Kindergarten at 11:46 am. We'll pick him up early to get him to the Cancer Center for his 2:00 pm appointment with Dr. Mody, the fabulous nurses, a bag of saline, some pre-meds, a push of vincristine, and a small bag of irinotecan. He'll get the irinotecan every day this week, followed by one more dose of vincristine next Monday.
We are curious to see if Simon does better this time around and manages to stay clear of complications like viral infections. We are planning for him to have scans and tests the week of March 17. At that point, we will be evaluating whether he is showing a response to the treatment.
We're hoping for a good week at school, an easy time with chemo, a fun week with Grann visiting from Ohio, more good playtimes for Simon and Miriam. And most especially for cell death among the colonies of neuroblastoma inhabiting various parts of Simon's body. It is time for the confused cells to realize they don't belong in Simon's bones. It is time for the nasty invaders to 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