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WHAT'S HAPPENING Archive February 2003February 20, 2003 "Feeling Much Better; Counts are Still Low"The past 10 days have been a lot less turbulent than the rollercoaster week of the February 9 update. Miriam has been well enough to go to Linda's everyday. Markus was well enough to go to a conference in Cancun, Mexico (lucky duck) last week, and Simon has had a mostly better time. Miriam is now past the 3-week window of potential chicken pox. Simon will still be considered vulnerable/potentially contagious for another week or so, since he had the Varicella Zoster Immune Globulin injection to ward it off.A fever of 101 F prompted a call to the doctors last Thursday (Feb. 13). Simon's Aboslute Neutrophil Count was 700 that morning, putting him near the neutropenic range. I was advised to bring him in through the ER to get checked out. It is a terrible thing to pluck a sleeping kid from his bed for several hours in the ER. He went through the usual: blood cultures, blood work, chest x-ray, physical exam. And he had a nasal swab test to look for viral infections in the back of his throat. That was a nasty procedure that involved me and a nurse holding him down while the other nurse stuck the swabs in and made him cry in discomfort. The viral test is being done to detect Influenza A because there has been a terrible string of 6 deaths in Michigan among children showing flu-like symptoms that rapidly turn fatal. Simon was admitted, and we got to sleep in his hospital room around 1:00 am. I was really glad my mom was here to be with Miriam, since Markus was off in sunny Cancun! Simon's hospital stay was brief. The staff dressed in lovely blue plastic gowns and masks to avoid carrying anything infections (flu, chicken pox, etc.) from him to the other kids. His fever abated, and we got to go home after only one night with a new prescription for the world's yuckiest-tasting antibiotic: Ceftin. Another holiday, Valentine's Day, spent in the company of our hospital friends. Simon received a delightful call from friends at his school, wishing him a Happy Valentine's Day. Taking Ceftin is definitely Simon's primary complaint at this point. We still have 7 doses to go . . . Meanwhile, we were surprised to learn on Monday (Feb. 17) that Simon was neutropenic with an ANC of only 100. Although his white cell count is pretty good (1.3), he seems to have no neutrophils to speak of. We thought this chemo would be less bone marrow suppressive, so we weren't prepared for a week of neutropenia. As of today (Thursday), Simon still has an ANC of 100. Dr. Mody says the virus Simon was fighting off on the tail of his last chemo has probably combined with the chemo to give his body an extra hard knock. He has advised us to keep Simon out of school. We don't know yet if Simon will be ready for the next chemo cycle, currently scheduled to start on Monday. At least his platelet count is already back to 50 (remember we're looking for 75 there). Grann (Mary's mom) finally went home to Oberlin on Monday after a gruelling 11 nights on our sleeper sofa. We had asked for her company during Markus' trip but hadn't anticipated that her arrival for Miriam's chicken pox scare would extend into such a long stay. She and I have long since finished that butterfly puzzle, and a bubble frog puzzle. We have both played countless games of memory, dominoes, go fish, etc. Markus has played a lot of games, too. These days, the kids don't want to consider going to bed without one last game. Thoughtfully and lovingly prepared meals from many kind folks continue to sustain us, nutritionally and spiritually. We have also recently begun to work on creating a schedule of college student helpers from a group called University Students Against Cancer. They've offered to come over and hang out with Simon when he needs to stay out of school. We hope this will help Mary and Markus have the time, energy, and focus needed for work.
February 9, 2003 "A Lot Going On and Some of Simon's 'Worstest Days'"When we last updated the site a week ago, we were in an "anticipation" mode on several fronts. The week took so many twists and turns, that I want to try a different kind of update to give you more of a "minute-by-minute" sense of it all.The questions looming on Sunday evening, February 2:
Simon's platelet count is a whopping 85,000 on Monday morning. (Must be the bromelein in the pineapple we shared with Victor, Alita, Kyla, and Scott on Sunday evening after our romp to visit the horses in the country!) We follow Dr. Mody's advice, despite the chicken pox possibility, to start the chemo. Dr. Mody doesn't want to let Simon's cancer alone any longer, and we agree.
Miriam develops a fever Sunday night and can't go to daycare on Monday. Markus has been coughing, feeling lousy, and talking like a bass-baritone for several days. Could this be the same flu/virus that he's fighting? Or is this the fever before the onset of chicken pox . . . (It's day 10 since her exposure.)
On Tuesday, Simon continues chemo and goes to kindergarten. Miriam stays home again, coughing in duet with Markus. Mary makes it into work for a brief appearance.A delicious dinner arrives courtesy of Marta Manildi (of the myriad knock-knock jokes in January's message board). Markus (hack, hack) heads with Simon to German School, where Markus delivers an exciting lesson about vehicles.
We carry liquid Immodium with him, along with a note for the school to adminster it, in case the diarrhea starts up.
Wednesday, Miriam seems a tad better. Simon is increasingly tired out. He has morning chemo, followed by school and home for the rest of the afternoon with Markus (hack, hack).
Markus decides Miriam is fit for an afternoon at Linda's house and takes her there at lunch time. Guess she's OK!
Thursday morning it seems impossible to get us moving. Miriam takes the chance to hop in the bath with some good water toys. As Mary dries her off, she notices a red spot on the back of her thigh. Oh, no. What's this?!
We call Linda, and she checks with her doctor for advice. Yes, chicken pox often starts out with a solitary spot, and the thigh is quite typical. Miriam needs to stay home from daycare to protect the other kids. Later during Simon's chemo, we get further "assurance" from nurses that this does sound like chicken pox.
Friday. We make our millionth check of Miriam's trunk, front and back, for more chicken pox. Nothing. But her fever is raging, and she looks and acts pretty sick. She needs to see a doctor. Mary takes her to Dr. Molly; Grann takes Simon for his chemo (he's most unhappily compliant with this change in companion, since Mary has gone with him every day so far this week. Markus has been too sick to allow in the cancer clinic).We call Mary's mom, Ann, to see if she can come to Ann Arbor and help us through this crazy week. She graciously hops in the car and arrives in time for dinner! (A lovely meal provided by church friend Kathy Hufnagel.) We keep Simon home from school because of his increasing fatigue and because we give in to our inability to "staff" all roles of chauffeur, nurse, etc. in multiple locations. On day 4 of chemo given in isolation because he may be carrying the chicken pox and needs to be kept away from the other cancer patients, he's pretty bored.
Miriam does NOT have the chicken pox! That one red spot on her leg is some other thing. She does have a nasty ear infection. We embark on homeopathic remedies and "onion ears" (a remarkably effective infection reducer involving squeezed onion juice on a small cotton ball, stuck in the ears). By the end of chemo, Simon is pretty wiped out. He's also on the verge of an ear infection. We have a prescription for Zithromax if he gets a fever. Early to bed with these two unhappy kids. Saturday, Simon is a little feverish. The five of us play all sorts of indoor games in every imaginable combination. Memory (four different versions), Old Maid, Go Fish, Little Bear Game, Candy Land, Rund und Bund (a German game), jigsaw puzzles. Simon and Miriam yo-yo through their moods, and Simon's fever climbs. The night is fitful, as the recent nights have been. Markus makes a 10:30 pm run to the 24-hour CVS for the Zithromax. Simon finally gets his diarrhea around midnight. Sunday, Miriam is clearly feeling better, although still coughing a post-nasal drippy cough. Simon is feeling worse. He's whimpery and feeling discomfort and fatigue. Then he wins a game of Candy Land, and he's bright as the sunshine. His eyes are blood-shot red, he's pale, and he complains of pain in various joints. Dosed up with Tylenol, he seems to be in much less pain. We enter the coming week with many unanswered questions of varying weight:
Miriam has another 7 days of vulnerability; Simon another 15, since his VZIG injection prolongs his potential incubation period.
He's still coughing, but the fever he spiked on Friday seems to be abating.
It's a sprawling and most distracting mess in the living room . . .
He's complaining of pain in his jaw, neck, spine, elbows, knees, thighs, and hips.
Simon bemoans the harshness of the current days. Yesterday he called them his "worstest days ever". I asked him if this was even worse than recovering from surgery, and he said yes. Nonetheless, he's reasonably up and about, and he's winning a heck of a lot of Memory games.
If the pain is from his cancer, may the chemo he is receiving make swift work of knocking back those nasty cells. And may Simon recover from his flu well enough as his counts begin to drop later this week from the chemo.
February 1, 2003 "Good Engergy; Still Waiting"When we last updated this site, we were anticipating the start of a new chemo regimen on January 27. We hit upon two issues, however. Most startling was learning that the good buddy Simon had spent his Saturday with broke out in chicken pox that Monday morning. That put Simon (and Miriam) in "perfect" contact with that disease. Simon has never been vaccinated for varicella, nor has he had the disease.We contacted the on-call doctor right away and learned that Simon should receive an injection of varicella zoster immune globulin (VZIG), which does a good job of warding off chicken pox if given within 90 hours of exposure. Simon had the shot Monday afternoon. It was a tough shot (2.5 cc in the thigh muscle), and he was very brave. His nurse Martha was impressed at how well he kept his leg relaxed and at how he used "bunny breathing" to keep himself calm (a technique we picked up from the Kid's Yoga video). With all the neupogen and Iscador, Simon has had plenty of practice receiving injections in his legs. Please don't imagine that he handles this task without objection. On the contrary! But he manages to reach a point where he's ready to deal with it. And deal with it he does. In addition to the chicken pox scare (which won't be over for a while yet), we learned that Simon's platelet count was only 57,000. That's still well below the target of 75,000 to resume chemotherapy. So, Dr. Mody advised waiting another week. We are still uncertain how risky it will be for Simon to receive chemo, which is likely to supress his blood counts further, while he has a known chance of getting chicken pox. The procedure for treating chicken pox in kids with cancer is to hospitalize them for 3-5 days and put them on an IV antiviral drug. We understand this to be more of an uncomfortable and inconvenient set-back than a serious threat to Simon. At this point, we are really hoping that Simon can hold off on getting chicken pox. As for Miriam, one of the nurses advised us to hope that she doesn't get it now. But that if she does get it, that she gets right away, while Simon is protected by the VZIG. Imagine hoping that your child gets chicken pox! We are also hoping to get him started on an effective chemo regimen soon. It is disquieting to know that cancer is lurking inside his otherwise high-energy body. Both Mary and Markus are feeling under the weather today (Mary with a nasty headache, Markus with a cold that gives him a deep baritone voice). At bedtime, Simon called out, "Raise your hand if you feel sick!" Markus and Mary raised their hands. Simon didn't raise his. We asked him if he's sick. "No!!" he laughed. It's good to know that he really doesn't feel like a sick person.
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.
2006
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
ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
Irinotecan/vincristine at home
ITP chaos
Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
Irinotecan/vincristine in the treat then evaluate mode
Still recovering from MIBG therapy
Finally starting kindergarten!
MIBG therapy
Recovering from transplant
Stem cell transplant
Surgery
Several months of topotecan/cytoxan in the treat, scan, evaluate mode
Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
Stem cell harvest (to be purged)
Diagnosis and starting treatment
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