WHAT'S HAPPENING Archive June 2003
June 27, 2003 "Going With the Flow"Simon's platelet count is 25 today. That's after Wednesday's transfusion. We'll hang out for the weekend and have him checked again on Monday. We still do not have an explanation for the drop. Simon's bone marrow aspirates, collected on June 19, are still not resulted. Apparently the lab is way backed up.
Markus and the kids are enjoying some sightseeing in the blistering heat of New York: Statue of Liberty on Thursday, possibly the Empire State Building today.
Mary is in Chicago, soaking up information from specialists who study and treat neuroblastoma, in addition to the many other families here. And for free time fun, she is scouting out furniture for our new house! If you're not familiar with it, take a look at Room & Board.
June 25, 2003 "More Information to Go On"We now have most of the results of Simon's tests from last week. The upshot is that Simon will stay with the 3F8 antibody therapy and wait 3-4 weeks to see if his HAMA response subsides. If he becomes HAMA-negative, he can have the next 2-week course.
This is good news! It means that we have evidence that the antibody was effective on his remaining cancer. His MIBG scan showed slight improvement in the known bone/bone marrow sites and no new sites of cancer involvement. The bone marrow biopsy was clean! "No evidence of neuroblastoma." The bone marrow aspirate is still pending. Apparently the lab that processes these tests is pretty backed up at the moment, making the results slow to come.
Simon's platelets remain extremely low. His count dropped to 10 today, so he is receiving a transfusion. Otherwise, his counts are quite strong.
For the next 3-4 weeks, we'll be watching his counts carefully to be sure we catch it if he needs another platelet transfusion. We'll draw a tube of blood for a HAMA re-test in early-mid July. And otherwise, we'll hang out and enjoy a little time off.
In a more efficient world, Simon would be heading right back into 3F8 antibody therapy to keep hammering at his cancer. In Simon's real world, he needs to take some time to absorb the hit from this therapy. Although it is not common, some kids do experience a platelet drop with anitbodies.
June 24, 2003 "Nothing New"Thanks for checking in, but we don't know anything more today. Simon's platelets are down to 15, but Dr. Kushner decided not to transfuse. We'll check again tomorrow.
Test results are still pending.
Markus and Miriam arrived this afternoon, and we are all really happy to see each other.
June 24, 2003 "More Limbo"We don't know much, but I imagine folks are eager to hear the latest. Here's what's going on.
We will continue to update this site as we have information and time to do it. Believe me, I know the waiting is excruciating.
June 20, 2003 "A Steady State of Change"Simon and Mary are back in New York at Memorial Sloan Kettering Cancer Center and the Ronald McDonald House. There have been a few twists and turns this week. At this point, we have more questions than answers.
Here's what we know:
Here's what we don't know:
People tend to wonder if developing the HAMA response is a good or bad thing. In Simon's case, it's a set-back because it's keeping him from continuing therapy for the time being. However, we won't know until Monday whether he has responded to the antibody therapy (i.e., if his marrow looks clear(er) and his MIBG scan shows less disease). If things are looking worse in any way (more disease in marrow and/or MIBG scan), then we will be looking at other approaches and discontinuing antibody therapy.
So, gee, have a nice weekend! We're going to try to. We're hoping to get tickets to The Lion King. We had a big outing yesterday that included the Pokemon Store in Rockerfeller Plaza and the Toys R Us at Times Square. We are enjoying immensely the company and helpfulness of our travel companion, Devon (yet another member of Mary's staff at Arts at Michigan who has offered her time to accompany us to New York).
June 12, 2003 "Back in Ann Arbor; A Great Deal Going On"Simon, Mary and Ann/Grann returned to Ann Arbor from New York on Saturday, June 7. Simon weathered the second week of antibody therapy much as the first. It is a tough and relentless process, but the relative shortness of the terrible parts somehow makes it bearable.
Simon returns to New York on June 18 for scans and bone marrow tests. These tests will show how the antibodies have affected Simon's cancer. I believe you already know exactly what to hope for: lots of clean bone marrow and fading signals from metastatic bone lesions that were still lighting up on the MIBG scan in May. In other words, cancer going bye-bye.
We have FedExed a tube of blood to New York to be tested for HAMA (human antimouse antibody). If Simon is negative for HAMA, he can continue to receive the therapy. If he's positive, we'll have to discuss next steps with the doctors in New York. Once the immune system has developed this response to the mouse antibodies, the therapy can no longer be used effectively. Patients in this situation can wait until the HAMA goes away, or they can pursue alternative therapies.
In addition to this busy schedule with therapy in New York, we have an outrageous list of other family stuff going on. Most of it is exciting stuff, but the intensity is very high.
For some of you, the news that we are moving to Salt Lake City, Utah may be a surprise. We have slowly worked toward this plan since the time of Simon's diagnosis. Markus accepted an appointment as assistant professor at the University of Utah Business School way back in March of 2002. In order to give us stability in Ann Arbor for Simon's treatment, he deferred the appointment and has been on leave status for a year. His official start date there is July 1.
So, here's a quick list of what else is going on:
June 1, 2003 "Update from New York"Simon has now made it through his first week of antibody therapy in New York. Go, Simon!
All four of us arrived on Sunday, May 25 to take up residency again at Ronald McDonald House. It was fun to have Miriam along. She was very excited about being in the big city! Markus had initial hopes of catching a show on broadway (on his own and with the kids). The closest we got to a cultural event was to see "Finding Nemo" on its opening day last Friday.
Keeping up with Simon's treatment schedule and dodging the rain have limited our activities somewhat. We spent a rainy Memorial Day close to the RMH, taking a break in the downpour to walk south to FAO Schwarz. Miriam got a baby doll in a front carrier (sort of like a Baby Bjorn), and she proceeded to take excellent care of the baby all week as we were in and out of the hospital. Simon was able to exchange a transformer that he'd gotten in duplicate for his birthday and get another one, his highly coveted "Optimus Prime" instead!
Here's how the treatment went, starting on Tuesday morning.
Simon arrives around 8:00 am. He gets weighed, temperature checked, and an armband to identify him. Then he hangs out until he gets called back to the outpatient bed area to take his beta-glucan. His dose of beta-glucan (a reputedly bitter concoction) is 21 ML (mililiters) or about 4 teaspoons. It's dosed in a syringe. He's not allowed to chase it with water. He is allowed to lick a lollipop before taking the medicine and then continue to lick the lollipop afterward. Aside from that, he has to avoid food and water for the next hour. He says the beta-glucan is very yucky. But, with the lollipop hooked up in a Zerg (from Toy Story) "spin pop" device, he's able to manage OK. Sour lollipops seem to work the best.
After the hour of waiting, the infusion of the antibodies begins. That's when Simon has to stay in his bed. Before that, he's free to go to the playroom instead. In the room (which is a double, partitioned by dark curtains), he has a squeaky-hinged over-the-bed television, and he likes to watch Cartoon Network. He gets hooked up to IV fluids, and then they start the pre-meds: benedryl (to help with allergic reactions like hives to the antibody) and dilaudid (a cousin of morphine for pain).
The antibodies are infused next. Initially, he doesn't feel anything. By the time the full dose is flushed through his line, the pain begins. Simon and the other children cry out in pain when their moment arrives. You can hear the others in the neighboring rooms. The saving grace is that the pain lasts less than 20 minutes. Simon manages his pain with hot compresses (on his abdomen and sometimes lower back), additional doses of dilaudid (at 10-minute intervals), listening to his Gemini lullaby CD,* relaxing back into a supported crosslegged half-sit against the raised bed, and receiving touch therapy from mom/dad to his forehead and abdomen. It's a pretty delicate balance. He requests more pain medicine and more "no-itch medicine". He's had pretty bad hives, especially on his face, for several hours following each day's infusion. When the pain subsides and the dilaudid/benedryl have taken hold, Simon dozes off for quite a while.
Eventually, perhaps 90 minutes to 2 hours after the infusion, Simon is ready to head home. He's hair (what's left of it--he's got about 20% cover of 1" long hair since his last chemo) is matted from sweat. His face is slightly swollen from the allergic reaction. He looks pretty tired, and he feels pretty cranky. As we like to say, he can go from zero to sixty in about 2 seconds. By evening, though, he's usually back to normal and feeling pretty even-tempered and chipper. Amazingly, he never balks at going back for the next day. He is convinced that he needs this therapy to get rid of his cancer.
We will head back to Ann Arbor on June 7. Miriam and Markus returned yesterday. Ann/Grann arrived in New York yesterday evening to take over on being the second grown-up. We enjoyed a Saturday evening dinner provided by the RMH and its team of Saturday volunteers. After dinner, the kids played mini-golf. Simon had some good beginner's luck and held the lead for a while. By the end of the game he was tied for third place. He was thrilled!
We have taken in a few of New York's pleasures. Mary had breakfast with other cancer moms at the Central Park Boat House on Saturday. Markus took the kids to the Central Park Zoo. Today, Simon, Grann and Mary went to the fabulous American Museum of Natural History.
We had our second visit from an Arts at Michigan friend today. Michael Steelman, a full-time employee in Mary's office, is in town for his brother's graduation from law school. He stopped by late this afternoon and spent some time with Simon down in the playroom at RMH. They played a bunch of the free arcade and video games together. Michael also brought a new batch of sour lollipops for Simon (he happened to be at Dylan's Candy Bar yesterday for his sister-in-law-to-be's bridal shower, and Mary asked him to get a little supply for Simon for week number 2 of antibody therapy).
If you're in the City, do let us know!
*We had actually forgotten to bring our Gemini lullaby CD with us. When Simon missed it, Mary fired an email request to San and Laz. The next day, a new CD arrived for Simon via FedEx from the eminently kind Laz. Thank you so much! The music really helps Simon deal with his therapy.
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