WHAT'S HAPPENING Archive December 2003
December 30, 2003 "Consultation with Dr. Kate Matthay"At the good suggestion of Dr. Richard Lemons, we set up an appointment with Dr. Kate Matthay at the University of California, San Francisco. That visit is described in WHAT'S HAPPENING on the January 3, 2004 entry.
December 18, 2003 "Simon Has Conquered Swallowing Pills!!!!!!"This entry was written December 18 and sent to our friends on the neuroblastoma listserv. We did not post it here until January 3 because Simon wanted to save the announcement of his accomplishment as a surprise for his Grann and Grandad, who arrived for the Christmas holiday on December 22.
Drum roll, please...
With moderate trepidation, we came home yesterday with a 14-day supply of accutane. We really want Simon on something anti-neuroblastoma, with all this "vamping til ready" caused by platelet instability. So, we're giving accutane a try as a tide-over until we know what's next.
The brown gel caps (one 20 mg, one 40 mg) looked like little pinto beans. They seemed slippery and harmless enough.
Attempt number one--"just swallow it"--ended in tears and "I can't do it!!!" We tried downing whole cooked peas for a while, but that wasn't much easier.
So, it became jello time! Mom (that's me) left for choir practice as Dad and the kids starting mixing the lemon jello. When I got home, there was evidence of jello consumption on the table. All was quiet in the kids' room.
Here's how I picture what happened, as Markus explained it to me. The three of them got totally goofy with the jello (which is a pretty hilarious substance). They slurped and jiggled and mushed. Simon imbedded his gel caps in the jello and eventually slurped one down. Much to his own surprise and to his extreme pride. The second capsule followed easily.
Tonight's flavor was watermelon. Simon had to make several attempts (he removed the gel cap 3 times and replaced it in new jello before he had success). There was more frivolity. This time the dark pink jello came out of our liqueur glasses to form a lovely, small, wobbly, suggestive cone shape. We all laughed a lot, and Simon got his med down without a fuss.
Genuine laughter is a great elixer. When Simon reported his success to me this morning, the pride that came streaming out of him was a joy to behold.
December 15, 2003 "Over the Flu and Still Working on Plans"We had a week of flu, starting with Miriam. She had a medium-high temperature for about 4 days, with a few upper respiratory symptoms, aches, and fatigue. We managed to keep her away from the doctor's office with several phone calls to the nurse, but she missed a full week of school.
As Miriam was pulling out of it, Simon's fever began to rise. Fortunately, his ANC (measure of immunity) was a strong 4.5. So, he did not require "just in case" antibiotics. As is always the case when a cancer patient gets a fever, blood cultures were drawn but showed no bacterial growth. Because the flu season is so vicious, Simon was swabbed (most unpleasantly) for respiratory viruses. He in fact had a strain of Influenza A (presumably Miriam did, too). Simon was put on a 5-day course of an anti-viral called amantadine. He missed 3 days of school, but was ready to go back this morning.
Platelets continue to be in short supply. Simon is hanging out with a count around 11,000. And we're just watching and waiting. He isn't currently symptomatic for low platelets, so we assume that the few platelets he does have must be "super-platelets".
We are hoping to travel soon to San Francisco for a consultation with neuroblastoma expert Kate Matthay. In addition, we hope to travel to New York in January for a work-up and consultation there about possible further antibody therapy. We still have a lot of details to work out, but we think these measures will help us pick the best options for Simon, including more intensive therapies that may cure, but will also have a big impact on quality of life.
We are also attempting to determine if there is any reason to hold off on accutane (13 cis-retinoic acid). If not, we will likely begin that oral medication soon.
December 5, 2003 "Still Waiting Around, But More Nervously"Another uneventful week has gone by. We had left things with Simon's doctors that we would treat his ITP (low platelets) with IVIG if his count fell below 20,000 this week. Well, on Monday he was at 19,000. We decided to wait. On Wednesday evening he was at 21,000. We're still waiting.
As an ITP patient, Simon is doing OK. 20,000 is not a great platelet count (for example, most doctors won't start chemo with a count below 75,000; and 150,000 is the lower end of normal). On the other hand, he is less at risk for the biggest dangers of low platelets (uncontrollable bleeding, bleeding in the brain, etc.). So, conventional wisdom is not to treat. The risks of treatment (IVIG can cause kidney toxicity, etc.) outweigh the benefits.
Meanwhile, though, Simon's neuroblastoma remains untreated since September 20. What to do? Do we treat him to boost his platelets so he can have chemo treatments? Do we start a retinoid? Do we go elsewhere for another evaluation? Do we attempt high-dose chemo followed by stem-cell rescue and then head for more antibody therapy? Do we just let him enjoy going to school?
We wish it were easier to divine the right way to proceed. ITP is clearly a confounding factor. The tumor board was scheduled to review Simon's case this week. We have not yet had a report from Dr. Lemons, but we expect to move forward next week.
Please think very strong thoughts for continued improvement in Simon's platelets; for brilliant and feasible treatment ideas; and, as always, for his cancer to keep from spreading. What the heck, let's hope together for spontaneous remission!
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