WHAT'S HAPPENING Archive May 2004

May 29, 2004 "Preliminary Results are Encouraging"

We are encouraged (although not totally sure how to interpret the result) that Simon's serum LDH is back in the NORMAL range. It was way high in April, so it's nice to have it back down. We hope it means there's less tumor activity. See below for the full count report.

From early results of Simon's bone marrow test, it appears that the marrow aspirate shows NO TUMOR. Yay! But we've heard that before, and we know that there's a good likelihood that the biopsies will come back positive next week. Still, no tumor floating in the marrow is way better than 30-50% tumor!

The CT scans show status quo in Simon's head--the tumor sites in his skull and jaw are "unchanged". That means they didn't get bigger, but they didn't go away either. The main thing is that he is not having pain. The CT also shows tumor in the right ilium (pelvis bone). The MIBG scan on Thursday next week will give us a better idea of how active, vs. dead or differentiated, the tumors appear to be.

We're ready for the rest of our weekend. Simon actually had Friday off from school, and we used that day for his long hospital day (9:00 am to 3:00 pm). He had an excellent wake-up from his anesthesia, after receiving two doses of fentanyl before coming out of the anesthesia. That was a big relief, since the last bone marrow in Salt Lake City in March had ended with a lot of disorientation and crying. Once awake, Simon turned his thoughts to eating, and he gulped down a hamburger and fries before heading to CT.

LABS on 5/28/04 WBC: 2.4 Hematocrit: 30.8 Platelets: 58 ANC: 1.5 LDH: 821 HVA: pending VMA: pending

DEFINITIONS AND COMPARISON VALUES WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL Hematocrit (related to red blood cells) normal range: 35.0-45.0% Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

May 27, 2004 "Ready for the Next Round of Tests"

Here's what to hope big hopes for as Simon embarks on the testing:

• That the tests go smoothly and quickly.
• That Simon's discomfort is minimal despite hunger, odd liquids to consume (CT oral contrast), boredom, anesthesia after-effects, and bone marrow poke wounds.
• That Simon's blood work continues to show stability and good health.
• That the bone marrow test reveals a decrease in the amount of disease in the marrow (in April 30-50% of the cells in the marrow sample were neuroblastoma; in October 2003 his marrow was clear of cancer cells). Go ahead and hope for clear!
• That the imaging studies show reduced disease sites, healthy tissues, and no new locations of disease.
• That Simon maintains his unbeatable attitude as he encounters all the tests and results.

At a school assembly this morning, Simon was formally presented with the quilt his classmates helped make. I hope to get more photos of it up on the site soon. Meanwhile, here are two.

May 24, 2004 "Enjoying Spring"

Friday last week was the final day of cycle #2 of temazolomide/irinotecan (chemo). We did all of the drug administration at home and were able to weave it into Simon's other activities pretty non-intrusively. He had a lot of fatigue, especially late in the day, on his chemo days. Each morning, his energy has seemed a little better. Today, under a bright blue sky in a city with roses blooming everywhere, Simon went off to school, eager to practice for the tomorrow night's play.

We are tentatively planning scans and other tests for next week, the final week of school. We hope to set it up so that he misses as little school as possible.

Beyond that, the summer yawns out ahead of us. We expect several visitors: Mary's brother David with wife Jocelyn and daughters Claudia and Eliza; and Mary's sister Julie with children Nathan and Margot. (There will even be a little overlap to have all the cousins together.) Later in the summer, Ann Arbor friends Amy and David with kids Jonathan and Miriam also plan a visit.

We hope to have the chance to tour some of southern Utah's national parks. We still have a lot of territory to get acquainted with in our new state. Any ideas or advice from those who know their way around here? You can post recommendations on Simon's MESSAGE BOARD or email us at simonandfamily@umich.edu.

May 18, 2004 "Simon's Birthday Celebrations"

We were busy over the weekend with celebrations, and I see that some former Ann Arbor friends mentioned Simon's birthday on his MESSAGE BOARD. Happy Birthday to Lev, too, who shares the same birthday!

At Simon's request, Gran and Grandad traveled out from Oberlin for the festivities. They arrived on Thursday and returned home on Monday. Simon's party took place on Saturday afternoon (2 days early). He invited several friends from school, and they had a good time doing a treasure hunt around the house and yard. Simon opened a pile of presents. Then we all munched on yummy chocolate cake, which Gran has baked for our kids many times now. (The recipe, by the way, comes from the "New Basics Cookbook" by the Silver Palate folks. There's only one chocolate cake recipe in the book. That's a good recommendation, in my opinion, and it's served us well so far!)

An outstanding moment occurred at the party when Ms. Eaton, Simon's first-grade teacher, made a special presentation. Totally without our knowledge, Simon's classmates and their 4th grade buddies had created quilt squares with portraits of each first-grader. Some (yet anonymous) moms from the PTA sewed it all together and created a stunning, cuddly quilt for Simon. All of us, including Simon, are touched beyond words at this outpouring of love for Simon.

Up until this year, Simon's birthday party has always occurred after his birthday morning celebration with the family. This year, Simon insisted on keeping that tradition, even though we held his party early. So, Saturday morning, Miriam and Simon had a delightful time following clues (which Simon read) to find presents. Clues like "I might be Nutella" had them laughing and looking in the cabinets. Setting up the hunt proved to be equally fun for Mary and Ann (with wrapping support from Markus and Norm) the night before.

Simon was able to celebrate his "actual" birthday at school on Monday by bringing treats for the class to enjoy at the end of the day. At home, he received a visit from our minister, Tom Goldsmith, who brought fun gifts for both kids along with greetings from the church.

Topping the list on May 17 was probably the small package Simon received in the mail that day from Beth Hospadaruk, a fellow UU from Ann Arbor and frequent bringer of delicious meals to us there. In keeping with the many jokes she shared in cards and on Simon's MESSAGE BOARD (see August 11, 2003, for example), Beth sent Simon a book called "Bossy Cow Jokes." But get this. In her card, she told Simon she had no idea when his birthday was and that she'd just pretend this was a birthday present. Beth, your gift showed up EXACTLY on Simon's birthday!

On the medical front, we are grateful and truly amazed to report that Simon is "back to normal". He is completely off pain medication (with rare exceptions). He is on the second week of chemotherapy, which we are administering at home. We anticipate another round of tests/scans to restage him after this cycle. Based on what we can observe, the radiation and the chemo have both helped a great deal. The other day, Simon told a friend that the growth in his mouth is completely gone. So far, his counts remain adequate, and he has not required transfusions. Go Simon!

One final item of business. We need to relieve your suspense and provide the answers to last week's "pop quiz". While many of you made excellently reasoned guesses, NOBODY got both parts correct! If you haven't taken the quiz yet, click here to see the quiz again and find the answer.

May 13, 2004 "Lots of Good Things to Report"

On Wednesday, Simon spent the whole day at school! He had gone for part of the day on Monday and Tuesday. When he arrived at school on Monday (for the first time since April 8), he was nervous about going into his classroom. He lingered in the hallway. He had a nice conversation with his principal, Mr. Conley. He asked to have his pump unhooked before he went into class, so I unhooked him. Finally, his teacher recognized Simon's reluctance to enter the room (although all the kids knew he was lurking in the hall). So, she had the kids go out into the hallway, where they surrounded Simon and offered cheerful greetings as he buried his face in my shoulder. A classmate named Conner summed up the feeling, "I hate it when Simon isn't here!"

The children were eager to show Simon new things around the classroom. Two projects had sprouted while he was away: a pumpkin seed in a cup, and a bean seed in a baggie that showed the root structure clearly. The children reported that in both projects, Simon's seed had been the first to sprout!

On the less fun side of things, Simon has returned to school in the midst of end-of-the-year standardized testing. Boo, hiss. It's a pretty dumb thing for first-graders to have to do. Fortunately, Simon likes a challenge when he's feeling well, and he doesn't seem to be suffering too much for having missed all the practice tests.

On the medical front, Simon really does appear to be doing very well. Dr. Lemons thought he looked surprisingly good in clinic on Monday. We began chemo on Monday, and Simon has handled it well. He's getting a 100mg capsule of temazolomide (jello flavor is watermelon this week), followed by a one-hour infusion of irinotecan. We're doing all of it at home. We hope the chemo is part of why he's been feeling better, and we hope this round will make him feel even better.

A CT scan of the head on Tuesday showed the tumor in his frontal skull bone to be largely unchanged since images done in early April, although it appears to have some central necrosis (dying of cells) and increased enhancement along the meninges, like a coating of the tumor (which might be a result of the radiation therapy). It's good news if the tumor seems to be dying and doesn't seem bigger. No one wants to see it invading the meninges. I continue to hope that temazolomide/irinotecan will obliterate the tumor, which bulges slightly on the top of Simon's head, altogether.

Blood counts are hanging in there, although platelets are on a nosedive, probably a delayed drop from cycle one with temazolomide. We decided not to wait around for recovery, though, and went ahead with the chemo. So far, no transfusions.

Serum LDH has dropped dramatically and is closer to the normal range. One of the urine markers is down slightly, although both are still well above normal. The changes are encouraging, and we're hoping for a big trend toward normal on all the numbers.

LABS on 5/10/04 WBC: 3.2 Hematocrit: 28.0 Platelets: 52 ANC: 1.3 LDH: 1075 HVA: 85.6 VMA: 37.2 LABS on 5/13/04 WBC: 3.3 Hematocrit: 27.9 Platelets: 35 ANC: 2.3

DEFINITIONS AND COMPARISON VALUES WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL Hematocrit (related to red blood cells) normal range: 35.0-45.0% Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

Pop Quiz

Who is this person with Simon?

a) our minister, Tom Goldsmith
b) Simon's principal, Mr. Conley
c) our neighbor Mike
d) Simon's baseball coach, Pete

a) discussing stock market performance
b) watching Miriam dance
c) watching Yu-Gi-Oh on television
d) disagreeing about a plan to go outside and play

May 9, 2004 "Happy Mother's Day!"

Simon and Miriam had wonderful creations to give as gifts today. Miriam had beaded a long, fancy necklace for me at her school. A replica of Simon's hands in rose-painted, fired clay forms a rose atop a green stake. Simon was able to create the hands back in April before his long hiatus from school. His friends helped complete the gift. I feel honored to have these gifts, and I am thankful to the folks who make it possible for the kids to create secretly.

Overall, Simon is doing quite well, and he is planning a return to school tomorrow morning. He has not been in school since before the spring vacation, which began on April 9. He has been mostly off his pain pump today, and his pain seems controlled by oral methadone alone. However, he has had a lot of irritability and fatigue, and that may be in response to pain. We will have to see what he feels most comfortable with, pump or not, as he gets back to school. In Ann Arbor, we saw many dear friends for the first time since our move last summer.

[I'm just returning from an interruption to my writing. Simon woke up unhappy. I had promised to hook up his pump in the night if he had pain. It's not clear what he was feeling, but we've hooked him up again. Markus rummaged for the right extension for the IV tube and attempted to create order in our vast container of medical supplies; I threaded it all into the pump, primed the extension, flushed Simon's line, hooked up the tubing, and turned on the pump. It's 11:30 at night. We're both pretty tired. I'm pretending to have the energy to write an update on Simon's Web site. But the truth? No matter how much "routine" we have with Simon's care, it's relentless, tricky, and time-intensive. What a lifestyle!]

I'll try to get back to my account of our trip another time. For now, it's bed time!

May 5, 2004 "Managing Pain; Recovering from Radiation"

In addition, Simon's radiation "side-effects" are easing off (I hate the term "side-effect" because there's nothing very "side" about them). The mucositis in his mouth, which was severe for about 5 days, is healing up. For a while, he would cry out in pain if anything bumped his sore spots or if a food irritated it. He would reach desperately for his pain pump to give a bolus push of the narcotic. Mucositis occurs when the outer tissues are killed off, leaving behind a raw, sensitive surface. Once the cells regenerate, the pain subsides.

Simon also had a raspy, weak voice for about 10 days, caused by irritation and/or swelling to his vocal chords from the radiation. That was so frustrating for him! He had many things to tell us (often about his discomfort), and he couldn't always get our attention or express himself easily, due to his lack of voice.

At the moment, Simon is taking a break from his pain pump, and we'll see if he's ready to be off it altogether. He is still receiving a small dose of methadone, an oral pain medication. It would be wonderful, in many ways, if his pain is reduced enough for him to be off the pump completely. If not, we can hook him back up whenever he's ready.

Simon is using his new freedom from pain and pumps to chase his sister around the house and tease her. He definitely has his twinkle back. He's a little skinny after a period of skimpy eating. Thank goodness for Annie's "Bunny" Noodles (an organic and much better tasting alternative to Kraft Mac and Cheese), goat cheese, cottage cheese, milk, and angel food cake. Simon still has extra tissue in the back of his mouth from the tumor in his jaw, so he's reluctant to try anything that requires chewing. Let's hope he can eat normally again soon.

LABS on 5/5/04 WBC: 3.6 Hematocrit: 26.6 Platelets: 79 ANC: 2.0

DEFINITIONS AND COMPARISON VALUES WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL Hematocrit (related to red blood cells) normal range: 35.0-45.0% Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL

WHAT'S HAPPENING Archive

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.

In 2006, entries on this page became sporadic. We named a ski run "Simon's Way". Miriam went to first grade. In December, she reached the point of being older than Simon was when he died.
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.
July-December 2005

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.
May-June 2005

Acts of mourning continue as life also moves forward. Mary travels to Denver and meets the bereaved family of Becca Lockler.
April 2005

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.
February and March 2005

Working through grief; working on life; trying a few new things.
January 2005

Approaching "the holidays" without Simon and marking time with the moon.
December 2004

Our fourth month without our dear Simon included a busy and rewarding celebration of Simon's legacy with the music duo, Gemini.
November 2004

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.
October 2004

Life without Simon creeps along.
September 2004

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.
August 2004

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.
July 2004

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.
June 2004

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!
May 2004

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.
April 2004

Chemo abandoned after further progression; begin CEP-701 phase I clinical trial at UCSF
March 2004

More chemo (round 2 topotecan/cytoxan)
February 2004

Disease progression (widespread in skeleton) discovered during work-up at Memorial Sloan Kettering Cancer Center; begin salvage chemo with topotecan/cytoxan
January 2004

Begin accutane (vitamin A derrivative to fight neuroblastoma); consultation with Dr. Kate Matthay at UCSF
December 2003

ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
November 2003
October 2003

Irinotecan/vincristine at home
September 2003

ITP chaos
August 2003

Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
July 2003

3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
June 2003
May 2003

Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
April 2003

Irinotecan/vincristine in the treat then evaluate mode
March 2003
February 2003

Still recovering from MIBG therapy
January 2003

Finally starting kindergarten!
December 2002

MIBG therapy
November 2002

Recovering from transplant
October 2002

Stem cell transplant
September 2002
August 2002

Surgery
July 2002

Several months of topotecan/cytoxan in the treat, scan, evaluate mode
June 2002
May 2002
April 2002

Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
March 2002

Stem cell harvest (to be purged)
February 2002

Diagnosis and starting treatment
December 2001/January 2002