WHAT'S HAPPENING Archive November 2003
November 29, 2003 "Bruises and Bumps"Simon's platelets have continued on their downswing, with his count at 21,000 on Wednesday before Thanksgiving. He has started to bruise more obviously again, and last Sunday he took a slip on the ice while running outside. He konked the back of his head. After a half-golf-ball-sized lump developed on the back of his head, we called the on-call doctor. She asked us to bring him to the emergency room for a count check and a possible head CT scan to check for internal bleeding.
He was acting just fine, so it felt like a precaution and not a worry. Oddly, we scarcely know the emergency room here. In fact, the last time we were there was during our visit to Salt Lake City in June of 2002. For a kid with Simon's medical issues that's pretty amazing. In any case, there never seems to be a "quick visit to the ER", although we were grateful that they isolated Simon in a room quickly. With all the flu and other diseases, a hospital ER doesn't feel like a very safe place to take a child! He did have counts done (platelets were a reassuring 35,000) and a head CT, which was normal. By morning, the swelling was nearly gone.
So, we come to the end of November, a month during which Simon's only medical activity (aside from the ER trip) was a dose of inhaled pentamadine (the antibiotic he's been getting for two years now to keep pneumonia at bay). Wow. Simon went to school the whole month! He kept up his reading calendar at home, on which he writes down the title of the book he reads to us at bedtime every night. I'm glad first grade curriculum has come so far from "The Fat Cat Sat on the Mat".
We enjoyed Thanksgiving dinner at the home of Tina, Bart, Carter and Granger, where we were joined by new friends Trilby and Leif. The kids tore around; Miriam practiced judicious dog-avoidance (she always gets better as the visit wears on); we ate delicious turkey and other stuff; and we introduced a new tradition: Schwarzwaelder Kirschtorte for dessert. It took some doing to find the necessary ingredients (including imported German sour cherries in a jar). Markus made a gorgeous cake, and it was yummy, too! Our friend Tina is of German decent, and she had once mentioned her love of that cake. No one missed the pumpkin pie.
We expect to be making treatment decisions for Simon over the next two weeks. The tumor board will meet next week at Primary Children's, and we may be traveling to San Francisco or New York for another expert opinion. If his platelet count is any lower on Monday, we'll be doing IVIG again to help him over his ITP, too. Meanwhile, he's growing taller and enjoying a pretty normal-feeling life.
November 20, 2003 "33,000"Well, Simon's platelets have dropped to 33,000, and he is showing symptoms of low platelets. He has a couple of dark bruises, and his nose continues to dribble red sometimes. *SIGH* So far, the doctors have not offered ITP treatment, although by now the down-trend is pretty clear. We may watch him carefully over the weekend and check again on Monday to see how he's doing.
I don't know about the rest of you, but we're finding this ITP thing pretty tedious and annoying. Also, Simon's ANC dropped to 800 today. That's not so great, but it's still above worry-button level. Meanwhile, we are still not sure about the next treatment steps, and we are finding it difficult to get some of the answers we need from Simon's doctor team in New York. So, we will keep on trying!
At my yoga class this evening, the teacher encouraged to think of our bodies on the cellular level during our final relaxation. She described it as a feeling of shimmering. I felt what she was talking about. Then I began to think of the process of cell death (apoptosis), the normal end of the life cycle that each cell is programmed to reach. Except for cancer cells. They are missing the all-important instructions to cease being, and thus they proliferate. I tried to imagine various cells (skin, mouth-lining, etc.) gracefully ceasing to divide and then dying to make way for the new. I felt saddened by the fact that cancer cells are out of this amazing balance that keeps life on track. I'm still looking for treatment approaches that teach cancer cells to die off--or, as we have discussed with Simon, to get unconfused.
November 17, 2003 "62,000"Simon's platelets are holding well, if a little lower than last week, at 62,000. It may be a down-trend again or just a fluctuation (apparently platelet numbers go all over the map in all of us). The rest of his counts are in the very acceptable range. So, this is the beginning of week #3 in a row of unhindered school attendance for Simon.
Today he brought home a certificate of "community contribution", which acknowledges Simon: "For being a good listener, taking part and keeping us all smiling." He told me, "They hanged-ed me up in the cafeteria." (I had quick, horrible visions of Simon hanging from a hook by his coat neck.) He further explained that a photo of him is hanging in the cafeteria for two weeks to recognize his contribution.
Today is also Simon's half birthday--he's 6 1/2. We chose this week to sign him up to be "Star of the Week" in his class. He made a big, colorful poster with photos and captions depicting himself, his family, and our recent trip to Yellowstone. The poster also has a US map with Michigan and Utah highlighted, as well as a map of Europe captioned "Oma and Opa". Last, but not least, the poster has a picture of his glistening, red-brown TUMOR. That photo is quite vivid, and it shows the tumor larger than life-size (about double). As star of the week, Simon has privileges like leading the daily "Flag Salute" and being the first in line when the class marches down the hall to lunch or to the library. It's a fun way to highlight each kid throughout the year, and Simon has eagerly anticipated his chance.
Medical-wise, we're still in evaluate and decide mode. It's nice to have such a good break from treatment and to have Simon feeling so well.
November 10, 2003 "85,000!"Simon's platelets are on a charge, and in the right direction! He was doing so well last week (no bruises, no bloody runny nose, etc.) that we FORGOT to take a blood sample up on Thursday. And we decided that was OK.
Today, Simon had a platelet count of 85,000. That's up a healthy 50,000 over last Monday. Yay! His other counts are also in the just fine ranges.
So, he's free to go to school and act like a regular kid this week. We hope to have further discussion with Simon's doctors here and in various other places later this week. Markus and I are beginning to feel that the next step will be 13-cis retinoic acid (a vitamin-A derrivative). Finally. In a "perfect" treatment world, Simon would likely have gone onto that medication after stem-cell transplant a year ago. Another option in the same drug family is a more experimental drug called Fenretinide. Both are oral medications and would involve swallowing the stuff. We shall see. Overall, though, it appears we are treading gently onto a patch of "treatment-lite" time.
Let's hope that Simon's platelets hold their own and that we can view ITP as a thing of the past. Let's hope that his ever-improving scans and his ongoing clean marrow stay that way. Go ahead and do a platelet dance for good measure. Keep rooting for "NED" (no evidence of disease). And smile with us that things are on a good trajectory.
November 5, 2003 "Good News on Work-up; Still Wondering About Next Steps"First of all, Simon was a dragon and Miriam was a princess for Halloween. They both wore the same thing as last year (that makes it so very easy!).
We now have all results from Simon's work-up. Mostly, it's sounding like good progress in the right direction, although there are parts that are tricky to interpret. His CT scans were all normal. His bone scan was normal. His MIBG shows "activity" (presumably cancer in bones) in his right shoulder, the base of his skull, and in his pelvis. It appears to be true that the spots that used to "light up" in his femurs (thigh bones) are no longer lighting up. We have requested a review of Simon's case by his doctors at Sloan Kettering as well as by the full team here. We should have a better description for his current amount of disease soon. At that point, we should be able to select the best therapy for Simon to pursue. It's so tempting to wonder if he needs a lot more therapy.
Simon's bone marrow biopsy and aspirate all came back negative. That's the third straight time. Another encouraging sign is that Simon's marrow has been very depleted. In July, it was markedly hypocellular, with a cellularity of 10%. The current test showed a cellularity of 60-70%. It's still below normal, but it's not nearly as thinned out.
So, his marrow has been "clean" since his one round of antibody therapy. All evidence seems to point to the antibody therapy working well against Simon's neuroblastoma. Too bad it also gave him ITP.
Speaking of ITP, his platelet count was 35,000 on Monday. We're checking again tomorrow. In contrast to last week, Simon has been able to go to school everyday and to continue all that exciting and exhausting learning about reading, writing, math, and other cool stuff.
Miriam has mastered skipping and can play her first song from school on the piano. It's a descending C-major scale, to which she sings: "Down, down, down, down, leaves-fall gently down-to-the ground."
November 1, 2003 "Some of the Results are In"We now have some of the results we were looking for over the past week, and I know many of you have been anticipating them eagerly with us. We learned on Friday that Miriam is not a bone marrow match for Simon. It's a disappointment, although we are not yet sure whether we would pursue therapy that involves giving Simon marrow from a donor. It is still possible to look at the National Donor Registry for an unrelated donor, but that's a complicated (and riskier) proposition. For now, I must say I had my hopes up in a romantic, sibling-love kind of way that Miriam would be able to give marrow to Simon that might somehow help him get over his cancer. The odds were against that being the case, but I still felt very hopeful. To put it all in perspective, a nurse told me that they once typed 7 siblings of a patient, and none of them turned out to be a match.
Simon's scans and bone marrow aspirate/biopsy have not been fully reviewed yet. We hope to have a clearer sense of his current amount of disease early next week. From there we will better be able to determine which therapies to pursue.
Simon's platelets drifted up to 21,000 by the end of the week. It's not great, but it's solidly in "double digits" (when he's under 10,000 he's at much higher risk of bad bleeding). He continues to bruise, but his nose isn't blood-tinged at the moment.
After two days of antibiotics, Simon's fever was gone, and so were his aches. By Friday evening, he was feeling spunky enough to trick-or-treat up and down our whole block. Both kids had a good time, despite the falling SNOW. We even tested out our fireplace for the first time.
For those who remember the connection to Halloween, Mary and Markus are celebrating 11 years married. We are planning dinner out tonight as a twosome, with the kids going over to the home of friends from Simon's school: Tobias (a first-grader in Simons's class) and Noah (a 5th-grader, who happens to be Simon's "Big Buddy" at school).
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