November 20, 2002 "Doing Uneventfully Well"Simon has been home now from his MIBG therapy hospitalization for 12 days now. The doctors see him on Mondays, and he has blood labs done twice a week. So far, he's holding strong and shows no sign of his marrow taking a hit from the radiation. We'll continue to watch carefully for another 4 weeks or so.
Simon's hair is growing in again. It seems to be a bit darker than the last time. So far, we can't tell if it's curly.
He's really looking forward to kindergarten, which he is likely to start after Thanksgiving. It's pretty thrilling to think about getting him going on something as mainstream-feeling as public school!
A week ago we had a pleasant dinner of Chinese take-out with Matt, Caroline and Hava. Simon got the right fortune cookie!
We spend our rallying and visualizing energy these days on imagining how the radiation is in there busting up the nuclei of Simon's cancer cells. Then, as Simon puts it, the dead cells go through his "poop factory" and leave his body. His poop factory is doing an excellent job these days. And Simon is eating voraciously. We take all of these things to be good signs.
November 8, 2002 "Still Radioactive, but Home!"
Click on this photo to see a day-by-day look at Simon's MIBG therapy hospital stay. Thursday brought a real highlight: a visit by children's author and storytime librarian Shutta Crum. Shutta read from her new book "Fox and Fluff" and from a family favorite "All On A Sleepy Night". Thanks, Shutta!
After 4 nights in the General Clinical Research Center at the UM Hospital, Simon came home today! He was injected on Tuesday, November 5 with a high dose of I-131 MIBG (18 mCi/kg). Over the next 3 days, his body emited a rapidly decreasing amount of radioactivity, and he was cleared today to leave his cell-like hospital room.
The hardest part was having a foley catheter in place from Monday morning until Friday morning. As one of his caregivers put it, "Big catheter, small penis." Simon suffered a lot of discomfort from the catheter, which was alleviated somewhat by a numbing gel (litocane) and drowsiness-inducing medications like benadryl. Since the body eliminates the radiocative substance primarily through the urine, it was necessary for him to have the catheter to keep the urine from hanging out in his bladder. Poor guy!
Otherwise, the hardest parts were being in semi-isolation. We (Mary, Markus and Grann) could be nearby and always see and talk to Simon. But for the first 36 hours, we weren't permitted to enter the room. Simon's nurses were limited in the number of minutes per shift that they could spend in the room helping Simon (15 minutes on day one up to 130 minutes today).
So, what did Simon do all that time, chained by a catheter draining into a lead-lined bucket? He watched non-stop television. What 5-year-old doesn't think that's a big party? Overall, he was amazingly good at all the waiting around.
When he was ready to leave today, he got particularly upset about leaving behind his favorite toy of the week: a plastic dragonfly. He knew going in that all toys he had in the room would have to stay in a locker in the hospital for 3 months to decontaminate. Still, he could not part from the dragonfly. He expressed such intense anger at us for insisting he put the bug in the box. It was clear his pent up frustration after a week in this "prison" was finding its way out. He was REALLY mad!
We have to follow a variety of precautions for the next 4 days, including keeping Simon at least 3 feet apart from the rest of us as much as possible. Physically, Simon is feeling absolutely fine. In about 2 weeks we'll see the effect of the radiation on his bone marrow. We anticipate that his marrow will be destroyed, or nearly destroyed, again. It is likely he will need an infusion of stem cells to recover fully. (That decision is made if he has an ANC of 200 or less (=neutropenic) for more than 2 weeks, despite taking neupogen. The neupogen doesn't start for a while yet.)
A series of scans will be done to assess his progress. On Monday, he'll be scanned to see the current uptake in his body of the MIBG. This scan may reveal disease in locations that have not shown up on prior scans, since the larger quantity of the substance has had the chance to "look around" his body more thoroughly. We really hope we don't see a lot of new metastatic tumor sites. Then, in early January, Simon will be scanned again to evaluate the effect of the therapy on his disease. That's the point where we'll all be hoping for a clean scan.
November 3, 2002 "Celebrating 10 Years Married!"
Since Simon and Miriam joined our lives, the coincidence of Halloween and our wedding anniversary (it was the only Saturday evening that fall that Markus' father, Peter, could make it over from Germany!) has made it a little challenging to celebrate in full romantic fashion.
This year for Halloween, Simon dressed up as Puff the Magic Dragon, and Miriam dressed up as a princess. We all joined in the big parade through our Family Housing neighborhood. The kids are nibbling their way through mounds of candy, and we're trying not to be too scanalized by the unhealthy influences.
For our 10th anniversary celebration, Markus and I (this is Mary writing) took my mom and dad up on the offer to GET AWAY for a night. We spent Saturday night at the Dewey Lake Manor Bed and Breakfast in Brooklyn, Michigan (an hour away in the picturesque Irish Hills). We had a pleasant dinner out in Tecumseh at the Evans Street Station. We enjoyed our first-ever night away from the kids, complete with fireplace, candlelight, and 10.5-foot ceilings. The spacious grounds at the B&B overlooked a lovely lake, and we watched the leaves fall from the trees in the sunshine before heading home in time for lunch on Sunday.
All seems to have been fine back at home, and we found my dad and Simon playing with the new Playmobil trainset. Miriam greeted us heartily and asked, "Did you have a good time sleeping?" Simon characterized our night away as taking a little vacation to mark our anniversary. He's holding out for a big party at home to celebrate, too.
We have an additional reason for happy celebration. Among our wedding guests 10 years ago were long-time family friends Emma and Del Mason, parents of Mary's childhood friend Lisa Mason. These wonderful people have just bestowed on us an immaculate, smooth-running 1993 Ford Taurus to be our second car. Mary's mom, Ann, drove the car to Ann Arbor yesterday. Simon just peeked in to say how much he likes the new gold car. It will truly make the logistics of our lives much easier, now that we have a second car. We are deeply grateful to the Mason's for this generous and supportive gift. THANK YOU!!
November 2, 2002 "MIBG Therapy Starting Monday, November 4"Simon will begin a course of MIBG therapy starting on Monday. He is enrolled in a study that is conducted right here in Ann Arbor at the University of Michigan Hospital. In fact, Simon's timing and location seem amazingly lucky at this point.
Simon's bone marrow doctor, Gregory Yanik, is the primary investigator on this MIBG study. It is a "Phase 2" study that was reapproved just one week ago after a 7-month hiatus while the FDA looked into an issue of liver toxicity. Simon will be the first patient on the revised protocol.
We feel very fortunate to live minutes away from one of only three centers nationally that offer this treatment (the other two are in Philadelphia and San Francisco). MIBG therapy is done specifically for neuroblastoma. Because it is in the earlier phases of trial, this therapy is not offered unless the patient has failed to achieve remission with more standard therapies of chemotherapy, surgery and stem cell transplant.
Simon's latest round of scans have revealed significant remaining disease in a number of parts of his body (femurs, pelvic bones, spine, right shoulder, jaw, forehead). Dr. Yanik believes this to be marrow disease, and Simon's bone scan showed no evidence of abnormaility in the areas of tumor activity on the MIBG scans, supporting this conclusion.
Simon will receive the highest tolerated dose of injected 131-I MIBG (a radioisotope) on Tuesday morning over two hours. Then he will be in physical isolation until the amount of radiation his body emits is at an acceptable level. His nurses and doctors will be allowed only minutes per shift to enter his room and care for him. We, the parents and other caregivers, will be able to stay within earshot and eyeshot of Simon the whole time, but we will need to remain behind lead shields that will be a certain distance away from Simon, as dictated by the radiation levels.
It's a good thing his room overlooks the rescue helicopter landing pads and several soccer fields. We have been told that Simon should not be in discomfort (except for a full urinary catheter for several days and possible nausea at the time of the infusion). The biggest challenge will be surviving without cuddles for several days and trying to keep from getting too bored!
We will learn in early January whether this therapy has had the intended effect of wiping out the neuroblastoma in Simon's body. He may need another infusion of his own stem cells (we have some in storage from last February still) to help his bone marrow recover from the effects of the radiation.
MIBG therapy, as a means of truly targeting neuroblastoma, strikes us a very promising method, and we are so hopeful that Simon's response will be a marked improvement. Dr. Yanik has several success stories using MIBG therapy with other children with similar refractory (persistent) neuroblastoma to Simon's.
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