WHAT'S HAPPENING Archive June 2004
June 29, 2004 "Today"Simon is enjoying a long afternoon nap, a good new habit for him. His cousins Margot and Nathan are playing with Miriam in our playroom. His Aunt Julie is cooking up some chicken curry, a favorite of her kids. (We expect Simon will not be interested in food, but we'll see.) Miriam just came in to say that her Grann's stuff is in her room, because Grann will be bunking there tonight.
Julie, Margot and Nathan are in the guest room. And, arriving later this evening from Stuttgart, Simon and Miriam's Oma and Opa Vodosek will be occupying the TV-room pull-out sofa suite. We are a bit of a hotel!
Mary's brother David and wife Jocelyn and daughters Claudia and Eliza returned to Indianapolis today. They were in Salt Lake City for three days at the end of a California trip. Take a look at the PHOTO GALLERY for some pictures from the month of June. With all four cousins in town, we asked Julie and David to move to a hotel for two nights. They graciously agreed, and we have been able to enjoy their good company and tremendous helpfulness but also kept a pretty quiet house.
Highlights of the time with the cousins included a big trip yesterday to the Hogle Zoo (right here in Salt Lake City). All 12 of us enjoyed a live-flight bird show, followed by Simon's favorite place, the reptile house, and lunch at the Beastro. We've also enjoyed sharing the excitement of GameCube video games. And Miriam had some real girl time with Claudia, Eliza and Jocelyn, including having her hair done in cute ways.
Otherwise, during our several days of internet down-time, we were pretty quiet here. We had planned a quick trip to southern California at the invitation of the Obstfeld family in Irvine. We were hoping to get at day at Legoland. As it turned out, Simon was very tired the morning of our planned departure. It soon became clear that he was in no shape for travel, and we canceled the trip. It turned out to be a wise choice (one that Simon made himself), because Thursday (our intended Legoland day) was a day of nausea that Simon spent quietly at home. We are so grateful to the Obstfelds, with whom we shared a number of years in Ann Arbor, for their generous invitation.
June 30, 2004
Today's meeting was very helpful in answering questions about how to monitor Simon's care without necessarily bringing him into the clinic. Combined with excellent advice from Sarah Friebert and Jim Olson, we are feeling comfortable with the current arrangements. Simon will continue on IV dilaudid and oral methadone, escalating as necessary to control pain. We will monitor eletcrolytes further but try to back off on that soon, hoping for stabilization. We will continue to work with Simon on his willingness to accept medicines (IV) to help ease his feelings of stomach pain and nausea. So far, he's very reluctant. We will use IV fluids at night to help keep him hydrated for now. As for calorie intake, we will let Simon's appetite be the guide.
Update on the photo greetings
June 22, 2004 "Enjoying Some Good Times"First of all, several of you have noticed the request for photo greetings for Simon in the "Recent Updates" section of the main page. Thank you! I've just corrected that notice so that it includes the email address for sending electronic images. Here's the information again:
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I am happy to say that our friend Liz Martin, a bonafide photo whiz, has agreed to receive the electronic images and print them all out for us on nice paper, etc. So far, we've had 5 fabulous greetings roll in. With some free time (or some more help?) I hope to get the greetings onto the Web site for everyone to see.
Simon's energy has really picked up the past two days, and we think it's because he's enjoying a visit from his cousins Margot (11) and Nathan (7) and his Aunt Julie. They have begun a western tour with our home as a base, and we are so glad to have them here for company and extra hands. Julie has run countless errands and made herself useful as an insurance claims/appeals filer (yay!!). Grann (who is also Nathan and Margot's Grann) remains a steady source of food on the table and clean dishes and clothes. She's also pretty entertaining for the kids.
Here's one of the ways the kids are having fun (they have figured out how to play single-player Pokemon Colesseum on the Nintendo GameCube as a compelling group activity!):
Medically, Simon's blood counts are holding stable, with the exception of platelets, and he had a productive transfusion on Monday (jumped from 16,000 Monday to 85,000 today). However, he continues to have low serum calcium levels and require IV supplements. Electrolytes appear to be very sensitive, and now we are starting to see irregularities in potassium and phosphorus, too. We've added some more supplements, but we are getting tired of the extra stuff to manage, and Simon was not happy today to get a new pill to swallow (a potassium/phosphorus tablet). We remain grateful for jello and Simon's doggedness at getting the pills down, even when he doesn't want to.
These new photos give you a little idea of the changes in Simon over the last couple of weeks. The photo on the main page of Simon and Miguel shows how vibrant Simon was looking and feeling during the last week of school (June 3). Since then, he's gotten more tired, and he has a bruise around his right eye. The bruise is probably a result of low platelets and/or pressure from the tumor in his skull. It is also typical for kids with neuroblastoma in the orbits (around the eyes) to get so-called "raccoon eyes". Simon is unhappy about the black eye, but we reassure him all the time that he is absolutely as beautiful as ever.
June 18, 2004 "Hanging in There"Currently, Simon is involved in an animated game of Uno (card game) with his friend Miguel, his Grann, and his sister. The cats, Sam and Simon, also seem mildly involved in the game.
The sun is shining; we are in a lovely place.
Simon's bag of dilaudid (his IV narcotic) just ran out, and we discovered we don't have a back-up, as we thought we did. Yikes! Quick call to the doctor for the home pharmacy to deliver a replacement. May they be swift.
Simon's pain is under control, and methadone on regular 8-hr dosing is helpful, too. Yesterday, I reconnected with a buddy from my youth in Oberlin, Dr. Sarah Friebert, MD.* My mother (Ann) had recently learned that Sarah now directs a Pediatric Palliative Care Program at Akron Children's Hospital in Ohio. As Sarah will say, unfortunately she knows a lot about the course of neuroblastoma, and she is generously giving of her time to advise us on decisions, medications, etc.
Some time has elapsed. Simon is now back on his dilaudid pump, which was off for about 90 minutes because of our supply goof-up. He did OK with methadone to tide him over, but he asked for the dilaudid. When I explained the hold-up, he said, "That sucks!" I gave him a methadone boost, and pretty soon Markus was home with the dilaudid bag. Normally, our homecare company delivers all supplies and meds to our door. This time, we didn't want to wait. Principle number one in effective pain control is: Don't let the pain get ahead of you.
Simon also received a bolus dose of IV calcium in fluid. Unfortunately, ever since he took zometa on June 8, he has had hypocalcemia. With the exception of two days, we have needed to give one-hour or ten-hour supplements via IV on each of the last 10 days. It requires daily lab draws, too. We've enjoyed having home care nurses come out to draw the blood for us (Linda and Chris). We'd normally do a lab draw ourselves, but there's a tiny tube to fill for an ionized calcium test, and we've decided not to teach ourselves how to do that one. It's an added bonus to see the home care nurses more frequently, because they also serve as hospice nurses, and we are making a slow transition in the direction of hospice care for Simon.
I thought there wasn't much to say today, but various things keep popping to mind. Yesterday, Markus and I took Simon in for a consultation with Dr. Shrieve, Simon's radiation oncologist at the University of Utah. Our intention was to make a plan for a few sites to give spot radiation and, hopefully, alleviate pain. We spent many hours there, mostly waiting while Simon slept and Dr. Shrieve tried to come up with a plan. In the end, he was unable to offer useful treatment options. For radiation therapy, you need to have a target. Simon's known targets, currently, are the bone tumor on his skull (clearly visible under the skin) and a "hot spot" on his right ilium bone. However, neither spot is causing symptoms (pain, pressure on the brain, etc.). Therefore, there is no good rationale for treating them now. The other spots (spine, scapula, sternum, ribs, left leg) that clearly cause pain do not show up on CT or MIBG as focal points. In other words, the cause of the pain is probably diffuse marrow and bone disease, making the target principle impossible to apply. We left the appointment believing that Simon has better options for pain relief at this point.
Finally, I need to report that in addition to the joy of having Miguel hang out and play for many hours today, Simon and Miriam received some great gifts today. Our friend Ruth Bradford Ohlsson from the UU Church (and classmate of my mom's at Oberlin College) stopped by with some scientific fun: a prism and a kit for growing crystals. A package in the mail contained goodies for both kids from the Obstfeld family in California. I have to say, the surprises were great. Miriam got little stuff for dolls and a lovely zippered bag. Simon had four small flat packages to open. The first was a Junie B. Jones book (currently a rage at our house). The second was another Junie B. The third, hmm, felt a little thicker, heavier. He pealed back the wrapping paper and discovered the Nintendo GameCube game of Pokemon Colesseum. He was thrilled at receiving such an awesome, coveted game. And he was tickled by the surprise to his expectations. Thanks to all for helping both kids feel special and have good fun!
And last, but not least, we received a care package from Zingerman's from the good folks at the Michigan Business School. Again. We're thrilled to have the yummy breads (Simon is so fond of that farm bread). And, to be perfectly honest, the luscious load of desserts finds more resonance with the grown-ups than with the kids. No sadness there!
*In case anyone else out there can relate to the connection Sarah and I share (for example, Emily Ganzel, Joan Yukich, or Janie Skinner--was there anyone else?), I have to say that I am suddenly remembering, among many other things including Sarah's and my 2-year career as tennis doubles partners, Monday morning discussions of "Le Weekend" in our junior year French class. "J'ai vue 'Bateau d'Amour'; j'ai chante dans le choeur a l'eglise".
June 14, 2004 "Sleepy"It has been a pleasant day for many reasons.
Simon says he is enjoying his naps these days, and he's been asleep for the past 4 hours (that's basically all afternoon). He is cosy on our soft sofa in the living room.
Lots of visitors today! Silvia Behrend came by in the morning. Liz Martin came with her kids Ian and Elise for a later morning/late lunch playdate extravaganza. GameCube, BeyBlades, Apples to Apples, sandbox, lunch from Noodles and Company. Simon was an active participant for much of the time, although not outdooors. Tom Goldsmith stopped by during the nappy part of the afternoon and visited with Mary.
We've got Simon's pain pump worked out to dose his dilaudid at a higher rate. The first pump had a malfunction, so we've had a replacement delivered. He seems to be more comfortable and less irritable. One guideline we have been given by a doctor friend (Jim Olson) is that it's better for Simon to sleep a whole bunch and have a few good hours, rather than have 15 uncomfortable, fussy hours.
We are expecting some exciting arrivals: Grann is arriving shortly at the Salt Lake City airport. Yay! We are also expecting a delivery of dinner shortly. Another yay!
Medically, Simon's calcium dropped off again this morning, so we are administering another 10-hr bag of calcium in IV fluid. Cultures drawn yesterday have not shown signs of infection, so Simon does not need antibiotics right now. His ANC is pretty good at 1.0. Platelets (21,000) and hematocrit (24.0) are falling off, however, and Simon is scheduled on Tuesday for transfusions of both.
Last, but very much not least, it's Mary's birthday today! The house is decorated with lovely rainbow mylar mobiles sent by Mary's parents. And there's a big cake surprise scheduled for after dinner.
Off to the airport.
June 12, 2004 "Slowing Down"Simon is in increasing pain, and he is now using his pain pump with dilaudid again. He complains most about his spine, scapula, and left leg. His stomach is a little iffy. Today he only had a few bites from his hamburger. He loved the lime popsicle for dessert.
Wednesday's platelet transfusion was a good one. On last check (Friday), his platelet count was 89,000.
We continue to check his calcium level daily, and he has needed a lot of supplementation. In addition to Tums, which he is eager to chew, he has received several 1-hr doses of calcium in solution. For the second time, he's receiving an overnight bag of 500 ml of fluid with calcium. The big drag about that is the inevitability of peeing (that's a whole quart). We hope his calcium level stabilizes soon so that we can stop watching it so closely. We are quite certain the calcium imbalance is the result of zometa. So far, it does not appear to be reducing his bone pain.
Simon's day was full of many fun times, many sleepy times, watching the movie "Brother Bear", going to the bookstore, going to the grocery store, playing Solitaire. The pain in his leg makes it hard for him to walk. When he does walk, his limp is pronounced. He is interested in trying a wheelchair. For a few more comments from Simon, take a look at SIMON SAYS.
Miriam became the proud owner of a new violin today (it's a 1/8 violin). She'll start lessons in about a week. She's very excited. Her enthusiasm may be wearing off on Simon, who has so far expressed no interest in learning violin. At bedtime he said, "Maybe I need to get a violin tomorrow." Mostly he insists that he wants to play the electric guitar and drums.
June 9, 2004 "Medically Busy"Simon slept in. He woke up at 9:15 am. That's a good 3 hours later than usual. The fever persisted, and he had a lot of leg pain, with his methadone completely worn off. I gave him methadone, carried him to the bathroom and then down to the TV room. He tried to play GameCube Yu-Gi-Oh, but he pooped out after about 10 minutes. He lay down on the sofa and went to sleep.
[Meanwhile, Miriam was checking out her soon-to-be violin teacher!]
I checked with the hospital about Simon's fever, and they said he needed to come in. The Hem/Onc (that's "heem-onk" for Hematology/Oncology) clinic was a zoo. The nurses were sprinting up and down the halls. We had to wait a while for a room to open up.
For the fever, Simon received a dose of the antibiotic rocefin (24-hr coverage). Cultures were drawn to check the blood for possible bacterial infection. Fortunately, his ANC was a robust 1.8 so he's not anywhere close to neutropenic or needing to be hospitalized for a fever.
As a follow-up to Tuesday's dose of zometa, Simon's ionized calcium level was checked today. It had dropped appreciably, so Simon received an IV dose of calcium over 60 minutes.
To top it off, Simon's platelets dropped to 10,000. So, he had a transfusion, his first blood product since March.
Otherwise, he continues to take the tiny dose of chemo in pill form. Methadone is still working well for his pain. And we have got another pain pump with dilaudid (as in April/early May). He chose not to use it tonight, and so far he's sleeping soundly. At least we feel relaxed about restarting a pain pump, if needed.
And we weren't planning to go into the hospital today. When he found his appetite, he had a hamburger, extra pickles, with fries.
June 8, 2004 "Today"Simon is resting peacefully after a long day. It was a day with a fair amount of variety, I must say.
He awoke early (5:45 am) with pain in his spine, unable to bend his chin toward his chest. We immediately dosed him with methadone. We felt certain this pain was not caused by a few nights of sleep on the playroom floor.
He played a lot of GameCube (mostly a Yu-Gi-Oh game left at our house by his friend Conner--we need to return it!). Among things to celebrate, Simon's bowels got moving again this morning, and his bloated tummy began to soften, thank goodness.
Late morning, Simon and Miriam went together to an art class at our neighbor Erin's. She's a wonderful instructor, and Miriam made some cool stuff. Simon pooped out at the art table and slunk off to play more GameCube with Erin's son (a classmate of Simon's), Tobias. Noah, the elder son, was Simon's fourth grade reading buddy at school this year. Lots of good connections to this family!
Markus made delicious hamburgers for lunch, and Simon enjoyed his improved tummy by eating most of his burger. Then we were off to the hospital, with Miriam heading for a fun playdate afternoon.
The clinic visit involved time to rehash Simon's test results with Dr. Lemons and go over the treatment options currently on the discussion table. 1) Zometa plus low-dose chemo (cytoxan or VP-16). 2) ABT-751 (clinical trial of new anti-cancer agent only available in Philadelphia or Washington, DC). 3) PZA (clinical trial chemo agent available at places like UCSF). Over the past 48 hours, we have received a great deal of helpful input from other neuroblastoma families and from several of the top minds in neuroblastoma treatment and research in the USA. All have given generously of their time and concern in answering our questions about what might help Simon most now.
We are dealing with DISEASE. Lots of skeletal disease. The radiologist who re-compared Simon's MIBG scan told Dr. Lemons she was amazed that Simon is feeling well enough to be in school, given the quantity of disease apparent on the scan. The continued presence of disease in the marrow also poses potential for pain, as well as compromise of Simon's immune system and blood counts as the cancer cells crowd out the healthy ones.
Upon learning Simon's counts today (see below), we realized that the more involved options (number 2 and 3) are out of the question for now. His platelet count has dropped to 26,000. Those studies require platelets over 100,000 and 75,000 respectively.
So, we dove right into option 1. Simon received an IV dose of zometa. Zometa is a biphosphonate, and it interferes with resorption of calcium from the bones into the blood stream. Thus, it helps to keep the bones in tact. It has been helpful in mitigating bone pain from metastatic cancer. So far, it has been used mostly in adults.
While at the clinic, Simon whipped out his new seahorse water spray toy. He ambushed several nurses and Dr. Lemons, who were all genuinely surprised by the squirt of water and by Simon's intense glee. The methadone, and his own creativity, had his pain nicely under control. While in clinic, Simon ordered and ate most of two MORE hamburgers.
At home, Simon was a mixture of stuff going on: more pain emerging (enough to impair his walking); a fever just under 101 F appeared and began to ease off after an hour; his appetite fell off (whose wouldn't?); he played more GameCube, including several hearty competitions with Mom and Dad; he took his low-dose oral cytoxan (chemo)--still grateful for jello as an aid to pill-swallowing; chewed Tums to combat blood calcium depletion from the zometa; played a family game of Junior Apples to Apples (a very fun game); read more Junie B. Jones; took more methadone; crashed.
At bedtime, he made a delightful contribution to the SIMON SAYS page, combining the purity in his heart with his consuming love of battling monsters, a la Yu-Gi-Oh.
He continues to be Mr. Amazing. We love him dearly.
June 7, 2004 "Disappointing Final Results"Well, the reason you wait for all the results to be in is that you need the whole picture to tell what's going on. With final results on Simon's bone marrow and results from his MIBG scan, we are now aware that his disease has continued to progress, despite the most recent chemo. We had so hoped for a better result than that.
We are currently awaiting FINAL final results because we've asked Primary Children's to make sure that all tests are compared to tests done in April at UCSF. Although we try to have these entered into "the system" immediately, we invariably have to remind them to take a look at the scans from external sources.
However, Dr. Lemons has termed the bone marrow result as "very disturbing" in its lack of response to temazolomide and irinotecan. As for the MIBG study, it appears that Simon has a new "hot spot" on his right ilium (also apparent on CT). Also, areas previously showing disease (up and down the legs, spine, pelvis, shoulders) look more intense and extensive on the present scans.
Dr. Lemons believes the stability in Simon's skull and jaw areas, so encouraging last week, must be due to the radiation therapy he had in April. Thus, we are poised to abandon the current chemo and our hopes that it would offer Simon a low-toxicity chance at clearing away his disease.
We are looking into a variety of possible next steps and will be discussing plans tomorrow (Tuesday) with Dr. Lemons.
Simon has been feeling pretty good, and he had a lot of fun at our church picnic yesterday. He joined in a softball game and had his first chance to hit the ball and run real bases! We're thinking about more Unitarian baseball opportunities over the summer.
For the past couple of days, he's complained of back pain. We are tempted to suspect a very normal cause for this pain: sleeping on the floor. He and Miriam have been testing out new sleeping bags on the playroom floor. We're hoping to explore Utah a bit and go camping nearby. The kids are also getting ready for a massive sleepover later this month when their cousins come to town. So, when Simon has complained of mid-back pain, I think of how my back feels after a night on the floor.
However, we are equally suspicious of bone pain in his spine. We've been giving him tylenol and small doses of methadone today, since he was in too much pain to sleep last night. His pain sensations seem to go beyond back stiffness. We hope that it will be easier to tell tomorrow afternoon in clinic what the origin of the pain is. If bone disease is considered the cause, Simon will probably have an MRI to determine where/if to use spot radiation to ease symptoms there.
Once again, we all have our work cut out for us.
One member of our listserv, a fellow Ohioan (OK, I *used* to be from Ohio) had a very strategic plan to offer, including judicious use of Simon's remaining stem cells and requests for compassionate use of therapies he may technically be ineligible for. I quote:
"PZA may be another option. I do not think that the kids have required their stem cells yet. so maybe pza then bso??
"Then ABT then NED then BA from Oberlin College."
June 2, 2004 "The Last Week of School!"Let us all celebrate the fact that Simon is about to end his first-grade school year! He is healthy enough to be enjoying the final days. He has done wonderful work in school, and he has made many friends. When I drop him off, I see how he and his friends greet each other with happy enthusiasm. It's always a brief, "Hi, Simon!" or "Hi, Ellen!", accompanied by a smile. It makes me think that we grown-ups could learn something from young elementary school children. You don't have to ask an obligatory, "How are you?" Just beam at each other and offer a cheery greeting!
Simon's MIBG scan is tomorrow. We are still waiting for final results on the bone marrow tests, but the biopsies do show tumor. The lab is running another slide to see if they can quantify the amount for us.
I have filled in the counts table with Simon's urine marker levels, too. One is higher than before, and the other is about the same. Bummer. We were hoping that we would see a decrease here, since the elevated levels probably indicate tumor activity. For some perspective, Simon's urine tests were in the normal range from December 2002 until January 2004. So, seeing them elevated way above normal is a cause for concern.
I am curious to see what Dr. Lemons and his team recommend now for further treatment. I'm guessing we will go ahead with more temazolomide/irinotecan. However, the doctors may feel the need to try something different if Simon's overall response to the chemo is disappointing.
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