WHAT'S HAPPENING Archive May 2003
May 22, 2003 "The Next Steps"Simon has been approved for antibody therapy by all the necessary entities. Dr. Brian Kushner (see a photo of Dr. Kushner here) has slotted Simon in for the 3F8 antibody with beta-glucan trial. He is set to begin on Tuesday, May 27. M-CARE (our health insurance) has approved the treatment, and Children's Special Health Care Services (a plan through the State of Michigan) is in line as a secondary insurance. Whew! That's all taken care of.
The course of the therapy is as follows. Simon will receive an infusion every day (weekends and holidays excluded) over a two-week period. (Normally that's 10 days of therapy, but we're starting Memorial Day week, so Simon will be getting a total of 9 days instead.) Prior to the infusion of the antibodies, he will have to swallow his daily dose of beta-glucan. We expect that to be a challenge because beta-glucan is derived from barley (it sounds like a cousin of Ambrotose, the nutritional supplement we have given Simon but now have to hide effectively in certain foods). It's probably sticky/starchy and is likely to taste icky. The patients are not allowed to drink anything after it for a full hour, and they can't have it mixed with anything. The one thing they can have is a piece of candy or gum afterward to help with the taste. One mom recommended sour apple lollipops. Simon has done more than his fair share of swallowing icky stuff. We expect this to be a daily battle that will require careful coaxing and good rewards.
The infusion of the antibodies will go through his central line over about 30 minutes. During and after the infusion, Simon is likely to experience a lot of pain. That's the worst "side effect" of the therapy. The mouse antibody (3F8) attaches itself to the GD-2 marker on neuroblastoma cells. That's how it helps the immune system locate the cancer cells and target them for destruction. The beta-glucan is thought to enhance the body's immune system to help it take out the malignant cells. The "side effect" comes from the fact that the GD-2 marker is also on healthy nerve cells, so the antibodies attach to them, too. As the doctors dryly put it: "This sends pain signals to the brain." We can only hope that Simon's response to this is as mild as possible on the pain scale. The children receive dilaudid (a cousin of morphine) as a matter of course. The pain is said to last about 45 minutes. Families find this therapy to be extremely hard on everyone.
Once the ordeal of the infusion is over, the patients normally go on to have a regular rest of their day. At least that's what some parents say. In contrast to chemo, the antibody doesn't leave a lingering sense of poison floating around the body. It does its work and goes away. Amazingly, most parents told me that their children don't dread the next day of therapy. They seem to forget about the painful process once it's over.
Many people have asked us lately if this development is a good thing. That's a hard question to answer, since no one knows much about the therapeutic value of antibody treatment yet. Simon will be about the 10th patient to receive this particular protocol. He is one of 24 on the study. From the standpoint of our being able to take advantage of the therapy, to have it paid for by insurance, to get a slot without a long wait, yes, this is a very good thing. From the standpoint of the risk involved, the pain of the therapy, the disruption to family life with all the travel to New York, and the fact that Simon needs to undergo therapy for cancer at all, it's not such a good thing. It's going to be really hard. We hope it is going to have a real benefit for Simon.
I guess I'm still waiting for that day when I wake up and hear some one say, "Cancer, what cancer? Simon doesn't have cancer."
May 18, 2003 "Taking a Breather!"Mary and Simon had a successful trip to New York May 11-15. It was GREATLY enhanced by the presence of Mary Paul, a student friend from the University of Michigan. Mary P works with Mary C at Arts at Michigan. She is an art student, an excellent babysitter, and an all around terrific sport. Mary P was immeasurably helpful on the trip, including helping to carry the extremely heavy scan/x-ray films. She stayed with us at the Ronald McDonald House. Although we kept her pretty busy, she also found time to enjoy New York a bit on her own.
We await confirmation of Simon's treatment plan at Memorial Sloan Kettering Cancer Center. He was scanned (CT, MIBG, bone) and poked for bone marrow biopsies. The tests revealed nothing new/different. Dr. Brian Kushner is advising Simon to be treated on a Phase I trial of 3F8 antibodies (monoclonal antibodies to neuroblastoma, made in mice) plus beta-glucan. The glucan is a dose-escalation part of the study. The antibodies are the same as those currently used in a Phase II trial. Simon's tentative start date is Tuesday, May 28. He'll have two weeks of therapy (daily infusion, outpatient), followed by two weeks off. The doctors hope to give him 4 cycles before he develops HAMA (human anti-mouse antibody).
The other big deal of the last week was Simon's 6th birthday yesterday!
More to come, hopefully also in photo format, soon. For now, exhaustion prevails.
May 8, 2003 "Getting Ready for New York!"Simon is recovering from the April 17-21 round of chemo. It's taking a while, though. He's needed a second platelet transfusion after the one described in the last What's Happening entry. He now seems to be well on the rebound, bone-marrow-wise.
Today it became apparent that he is losing his hair again. In the bath tonight he said, "That means I'll be bald again." He doesn't seem to mind. I tried to explain to him how the chemo is destructive to all fast-dividing cells, and it destroys hair cells, too. Simon's recent hairstyle (a fetching "sticky-up" bed-head style that any Hollywood stylist couldn't duplicate) seems to have drawn attention from his classmates. He received a stack of get-well cards, and several of them had delightful depictions of a kid with a lot of hair sticking straight up! Will he lose it all? We don't know. He was about to need another haircut! For now, it appears to be thinning out in noticeable batches.
The big excitement is that Simon and Mary are flying to New York City on Sunday. We need to quick remember who we know in the City (or who any of you folks know . . . ) We'll be staying at the Ronald McDonald House, just 5 blocks north of Memorial Sloan Kettering at 67th Street on the upper east side. Folks in the neuroblastoma community have great things to say about Dr. Kushner, the care at Sloan Kettering, and the fun and supportive environment at the Ronald McDonald House.
We've been very pampered by a world-class medical facility a 7-minute drive away. Now we can embark on some of the travel other cancer families face as a matter of course.
Next week Simon will have a battery of scans and tests. We will carry substantial records of his treatment, including films from prior scans/x-rays. I expect to discuss results with Dr. Kushner on Thursday (not including the bone marrows, which take several days to evaluate). We are very eager to learn what he recommends for Simon's next steps.
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