WHAT'S HAPPENING Archive March 2004
March 29, 2004 "Test Results are In"The March 27 update now contains full results from Simon's tests last week. The urine markers for neuroblastoma are still elevated, and the values are essentially unchanged since March 9. It's hard to interpret, but it probably means things aren't getting worse if the levels haven't gone up further. But who knows?
March 27, 2004 "The Whole Story on Our San Francisco Trip"We are home from California and getting back to our routines in Salt Lake City. Sorry to leave you all hanging for so long! There are a number of fronts to offer updates on, so I will try to be systematic.
We have helped this process along by incentivizing Simon with some attractive toys. On Day 1 in the UCSF hospital, he was having a lousy time swallowing the medicine mixed with apple juice. To overcome the impossible, we offered him a new transformer, the Optimus Energon. Immediately following the trying administration of the drug, Miriam and Mary hit the road in a city bus to the nearest Toys R Us to acquire the promised prize. We are now offering Simon a sticker on his chart every day and a new Bionicle at the completion of a full week. Bribery seems to have its place.
Simon is having weekly labs to make sure he's doing OK on the CEP-701. Things are looking OK so far. In addition to the below-listed results, his metabolic panel looked good, too. As far as monitoring his cancer status, we're looking at the urine markers VMA/HVA and serum LDH. Clinically, Simon appears to be doing well. He has not had obvious side effects from the drug (diarrhea, loss of appetite, nausea). He does not seem to have pain symptoms or headaches, which might indicate growth of the tumor in his skull. We are sighing a cautious "whew!"
On the platelet front, Simon is holding his own. We expected he might be below the 50,000 minimum for starting the CEP-701 trial (although they were willing to waive the requirement). Showing good stability, Simon qualified on his own, with a count of 58,000. As we glance into the future, we know that platelet stability will enable him to attempt other therapies, if needed.
What is CEP-701?
The aforementioned coastal location was Carmel, and we were so lucky to be offered the chance to stay in a vacation house there, generously offered by Chris and Jenny Wire. Chris is Annette (Wire) Williams' cousin, and Annette is married to Mary's cousin, Steve. Jenny is a cancer survivor herself, and her outreach to us is very meaningful. We hope to meet them someday!
While in Carmel, we visited the Monterey Bay Aquarium. It's a spectacular place, and we had the good fortune of gaining courtesy "VIP" access to a not-yet-open exhibition on sharks.
Another highlight of our time in the Bay area was visiting the Exploratorium. Mary has recollections of visiting this amazing hands-on place as a 7-year-old, and it was fun for all of us to romp through its fascinating displays.
Markus and Miriam returned to Salt Lake City on Sunday, and Mary and Simon hung out for another two days. By Sunday, Steve, Annette, and Rowan Williams were back in Oakland after their week of skiing in Park City, Utah. Simon was excited to stay at their house for the last two days and to have time to play with Rowan.
Overall, Simon's time at UCSF Children's Hospital was minimal. He saw Dr. Matthay on Wednesday afternoon and was admitted to the Pedicatric Clinical Research Center on Thursday morning for a 24-hour stay. The purpose of the hospitalization was to draw periodic blood samples to check the absorption of the CEP-701. Simon had the weekend off (that was the time in Carmel), and he only needed to show up for one more blood draw on Monday. We had initially agreed to a bone marrow aspirate as an optional part of the study, but Simon had too much trouble staying NPO on Monday morning (no food), and we ended up canceling that part.
Mary and Simon flew home on Tuesday, making it a one-week trip altogether. On Wednesday, Simon went back to school. He's had a little trouble getting back into the groove of school after a bunch of free-form days on the road. But by Friday, he seemed to be feeling glad to be at school, with his good attitude in tact. He reported that his favorite subject, PE (physical education, or gym) had been canceled. Mary uttered an expression of dismay, but Simon brightly said, "We did a math paper instead." When Mary pressed to see if a math paper was a good substitute for PE, Simon said, "It was a FUN math paper!"
The Williams Family in Utah
It was a bit of a strange turn that we needed to go to San Francisco while the Williams gang was in Utah, but, hey, who said any of this was convenient? We were so glad the whole crew came to our house on Monday evening for supper. It was really fun to have 11 kids running around and 13 adults to converse with. It was our first time with such a large group in the house, and it went great! Everyone helped in the kitchen, and we ate up a big pot of soup. By the time they left, everything was cleaned up, and we had no regrets about having a big crowd over the night before a trip. On the contrary, it was perfect.
March 20, 2004 "From an Undisclosed Location on the California Coast"Simon is doing well so far as a new patient on the CEP-701 trial at UCSF in San Francisco. We are making the most of the days off between hospital appearances and enjoying some relaxing time on the beach, courtesy of enormous-hearted cousins of a cousin! Connectivity is all but impossible, so we remain brief!
March 14, 2004 "Skiing Today; Still Working on Travel Plans"Markus and the kids went skiing today at Park City Resort. Check out the photos. We think we need to be in San Francisco by Wednesday morning and are working on plans for that trip.
Simon has been tired, and we're checking blood counts to see if he needs a red cell transfusion tomorrow. For now, he and Miriam are sleeping the sleep of skiers.
March 12, 2004 "Too Much Happening to Write an Update"Simon's week was busy with appointments for scans and other tests. By Wednesday afternoon it was clear that his disease is progressing (=increasing), despite the chemo. ARRGH!
By Wendesday morning, we were in rapid email exchange with various physicians, and by the end of Thursday we were penciled in for a Phase I trial of a new anti-cancer agent called CEP-701. (For the curious, please see the description of this trial at the NANT Web site.) We would travel to the University of California, San Francisco for parts of this therapy. In brief, it's an oral medication (liquid) that Simon would take morning and evening for a course of 28 days (with two days off every five days).
Dr. Matthay at UCSF was able to slot us in quickly because they happened to be in line for the opening and did not have another patient ahead of Simon. Since Simon went to see her for a consultation in December, we're ready to go as established patients there.
Many details remain to be set before we can go, but Simon and Mary anticipate leaving on Tuesday next week and being gone for a week.
As for Simon's more general status, he is now just three weeks out of his last chemo, and he is still recovering. He received a platelet transfusion today. He wasn't quite at the transfusion point, but all his Williams second-cousins will be in Park City for a week of skiing, and we wanted it to be safe for Simon to ski (if he has the pep). His hematocrit/hemoglobin is also on the low side today, so we are poised to transfuse red cells on Monday if it goes lower by then.
Grann went home on Wednesday, after two whole weeks of helping us out. It felt very strange for me to be cooking dinner on Wednesday evening, but kinda fun. Linda Britt, our beloved daycare lady from Michigan, was out for last weekend, and we all enjoyed hanging out and playing with Linda.
Finally, an update on the kitties. Sam and Simon-the-Cat are beginning to feel comfortable in the main part of the house, although they still prefer the basement at times. They are purring a lot and accepting petting from all of us. They are eating a lot. And they are playful with their sharp claws. After being gone for the day, I came home to discover that the Hoverdisc is no more. It was a helium-filled large disc for soft play in the house. Now it is a pile of shredded mylar. We still have a lot to learn about living well with our kitties. Does anyone know a good houseplant that we could cultivate for them to munch on? For now, they are nibbling at fresh flowers when we have them. So, we end up hiding the flowers.
Sam and Simon-the-Cat
March 3, 2004 "Same Old, Same Old with Chemo"Simon finished his five-day course of chemo on February 25. He had terrific energy and finished out the week at school. On Friday, I went to pick him up with the jog stroller, but he walked the full four blocks home.
The weekend was likewise normal and easy. The kids enjoyed playdates and church. Grann is with us, feeding us good food, doing laundry, chauffering kids, playing Barbies and cardgames, and helping us pet and feed the kitties.
By Monday morning, Simon was due for blood counts, and it was no surprise that everything was way down. Hematocrit was at 20 (transfuse point is below 24), and platelets were at 12,000 (transfuse point is somewhere around 20,000). He received both platelets and red cells in the clinic. His ANC was incalculable, with a white cell count of 0.2. Very neutropenic, and the only remedy we have for that is nightly shots of neupogen and time to recover.
Monday evening, Simon had a sudden and very intense pain episode. He complained bitterly of pain in the front of his left ankle. We gave him tylenol, soon followed by his first dose of oxycodone (a narcotic painkiller). After 30 minutes or so, the pain subsided, and he was running around again and acting pretty hyper. Probably the drug.
After putting him to bed, we wondered how we would notice the onset of a fever, if it happened, after dosing him with tylenol. We checked in with the on-call doctor, and she advised to use oxycodone only for pain while Simon is so immuno-suppressed.
Around 1:30 am (the wee hours of Tuesday), Simon woke up, needing to pee. He called for help because he was feeling dizzy. We checked his temperature, and he was spiking to 102 F. We called the doctor again and were sent straight to the 4th floor Immuno-Compromised Service. They didn't have any beds available, so they put Simon up for the night (and most of the next day) in the treatment room. The room was well enough supplied, but it didn't have a bathroom, etc. By Tuesday evening, Simon got into a regular room.
It was really icky to go in at 2:00 am like that, and Simon was most disturbed from his sleep. He was acting somewhat confused, which was probably from the fever. By morning on Tuesday, the fever was gone, and he waited out the remainder of this "boring" admission for fever/neutropenia. He was feeling good, so he played games, watched Playhouse Disney a lot, and made lovely creations with Hama fuser beads.
After a parting platelet transfusion, Simon came home this afternoon. It's great to have him back. We're relieved, for the gazillionth time, that our time in the hospital was precautionary and not based on a serious infection. He'll be on a home-administered antibiotic until his ANC reaches 500 again. The doctors aren't sure what caused the ankle pain on Monday. Simon didn't have any tender points to the touch, and the pain hasn't returned. We are hoping that it is not bone pain.
Next week, we'll be doing scans and a bone marrow aspirate/biopsy to check on his disease status. It's time to start sending enormous healing waves to Simon.
Update on Sam and Simon-the-Cat. The kitties have become more at ease in our house, although they still spend the days mostly in the basement. They seem to enjoy night-time romps, and we hear them scampering about. They've felt brave enough to hop up onto our bed and cuddle into the folds of the comforter. Simon-the-Cat likes to climb over my hands as I type, too. They are very beautiful cats, and I hope we can snap a real photo for you soon.
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