WHAT'S HAPPENING Archive February 2004
February 23, 2004 "New Housemates"Today we had the singularly exciting experience of welcoming two kitties into our home! They are 7-month-old brothers named Sam and Simon. That link takes you to the Petfinder Web site, where we learned about the kitties. We'd put up a picture of our own, if we could lure them from behind the boxes in the basement where they are hiding out!
We are all thrilled. We are pretty sure that "Simon the Cat" will become the name of the kitty, to help us keep him straight from Simon the Kid.
We also did day three of chemo today, and Simon had a good morning at school before heading home for hours of chemo and for the fun of welcoming Sam and Simon for a visit that turned into an adoption.
February 22, 2004 "Doing Chemo"Simon's platelet count was 34,000 on Friday, so we postponed the start of chemo by one day. Simon has had some morning headaches and fatigue. One headache was enough for tears and encouraged us to get a prescription for a painkiller that is stronger than tylenol (we haven't used the oxycodone yet). He is also feeling pain in his legs and has begun limping a little bit. We hope that the chemo alleviates the pain and pushes back hard on the disease. We also hope that his platelet situation does not become unmanageable as he gets through the recovery period after the chemo.
Simon has had some fun playdates to help him through the long chemo days. With all the pre and post hydration, two chemo medicines, and 3 supportive medicines (one for nausea, one to protect the bladder), it takes about 8 hours to complete the chemo each day. Two down, three to go.
February 17, 2004 "Waiting to Proceed"Simon is doing quite well overall. He's been going to school and enjoying special occasions like Valentine's Day. His counts are doing quite well, and he's now off neupogen. His platelets are back down to 31,000 as of yesterday. Dr. Lemons would like to see 75,000 to proceed with chemo, but he also doesn't want to wait much longer for fear of tumor growth.
Simon is scheduled for ITP treatments tomorrow, probably IVIG plus vincristine and maybe steroids, too. His platelets aren't low enough to transfuse (so far, he's had 3 transfusions in this post-chemo recovery). It's impossible to know if ITP is currently a contributing factor. So, we are planning to treat for ITP and then proceed with chemo on Thursday or Friday, more or less regardless of Simon's platelet count.
This spell of "normal" time has enabled us to do some wonderful things. Last Thursday, Miriam, Markus and I took a church friend up on the offer to see the ballet "Sleeping Beauty" in its final dress rehearsal. Jonas Kage and his wife Debra Dobson have reached out to us in many ways at church, and Jonas is the artistic director of Ballet West. During the final dress, we sat a couple of seats over from Jonas and were able to catch snatches of the conversations at the tech board. It was a beautiful performance, and Miriam stayed alert and fascinated for the whole 3 hours. Simon, who isn't all that interested in pretty ladies in tutus right now, delighted in staying home and having babysitter Laurie (also a church buddy) all to himself!
On Friday, Markus and I actually went to the theater on a date. We saw a very entertaining and thought-provoking performance of Neil Simon's "Brighton Beach Memoirs" a the Pioneer Theatre. We loved it.
On Saturday morning, the four of us went to the February performance in the series "Ring Around the Rose" for children. The Repertory Dance Theater company runs a series of performances in various media. This months' was dancers from RDT (a modern troupe) dancing about things you love, in honor of Valentine's Day. Next month, we'll see the Utah Symphony and Opera. The performances take place in the Leona Wagner black box theater. We're becoming habitual about grabbing lunch across the street at Salt Lake's premier brewpub, Squatters. From the garlic/herb fries to the one-dollar brunch drinks (like a mimosa), with lots of excellent food on the menu, we're all pretty happy to eat there.
February 10, 2004 "Recovering Well"Simon continues in his post-chemo recovery. Tonight will be the last dose of neupogen. Today he received a platelet tranfusion for a count of 16,000.
If he approaches an ANC of 1.0 (or 1000) and a platelet count of 75,000 on Monday, we'll be able to start the next cycle of topotecan/cytoxan.
Chemo is a treadmill of waiting for counts to be high enough to start, receiving the chemo drugs for several days and hopefully not feeling too icky, taking a few days' breather but avoiding germs, taking neupogen daily and avoiding germs, watching counts fall, doing the fever/neutropenia hospitalization drill if necessary, taking antibiotics if necessary, and back to the beginning of waiting for counts to be high enough to start another cycle.
At this point, Dr. Lemons is encouraged that Simon is responding to the chemo, and he plans to continue giving it as long as it seems to be working. At this stage, the wait between cycles may have to be longer. Monday may be pushing it to start the next cycle.
We are checking urine VMA/HVA and LDH levels along the way, in case there seems to be increased tumor growth activity despite the chemo. So far, so good. We'll rescan and test bone marrow after the second cycle.
Simon stayed home from school yesterday feeling too tired, but he went today for the morning and should be able to go the rest of the week. As usual, he looks terrific and you would really never guess his health history from looking at him.
February 6, 2004 "Back to School"Simon is doing very well, and he was able to go back to school officially today. Friday is a half-day, and that's a good re-entry. Thursday afternoon was a special celebration of the hundredth day of school, so Simon went in for part of the afternoon. Miriam and I joined him and the rest of his class for the festivities. Simon bravely and patiently wore his mask, overcoming his fear of looking really weird at school and dealing with the itchy uncomfortableness of it. Miriam was quiet and attentive, showing many of the 6-7-year-olds how to sit still and listen carefully!
This morning we were a bit off our game, so we forgot to get a lunch ready for Simon. I just walked his lunch over to school and found the kids in the computer lab. I'm really getting to know all the kids through my Monday morning volunteer stint every other week. As I was leaving, I accidentally bumped into a girl named Jesse. I bent down to apologize and give her a hug. She was very forgiving. Pretty soon, Emma wanted a hug, too. I said something about getting hugs from anybody who wants one. Nick jumped up and gave me a big hug, and Becca, a newcomer to the class, stood up and got her hug. What an honor! Those kids make me feel like Supermom!!!
On the medical front, Simon's ANC has reached 600 today, so he can stop taking IV fortaz to be sure infections stay at bay. He still has a ways to go, though, on getting his ANC up to 2000 to stop neupogen. So, we'll get through the weekend and check again on Monday. His platelets are down to 58,000 today. The last transfusion was on Monday, so that's really not so bad. Only if we see anything scary-looking (like bruises or petichiae dots or a bloody nose) will we worry about platelets before Monday.
Should be a good weekend. Markus will probably try to get the kids out on the ski slopes. We'll have to ask if Dr. Lemons thinks that's OK with current platelet status.
February 3, 2004 "News Flash"Dr. Lemons just emailed to say that Simon's head CT of January 28 has now been compared with the one from January 13. The news is terrific. The lesion on his frontal bone (with extention into the epidural lining of the brain) has SUBSTANTIALLY DECREASED since we started this chemo.
This is very good news. It's essentially the exact opposite of the misleading report we received last Wednesday. We are relieved, and we will continue to be vigilant and not believe results (good or bad) until we see them in print ourselves!
February 3, 2004 "Home Again"Simon was able to come home yesterday afternoon. He's in great spirits and is totally enjoying being free to run about the house, play with his toys, play with his sister, etc. Fortunately, Saturday night's fever (no pun intended, for anyone who remembers the 1970's) was gone by Sunday morning. Nothing grew on the blood cultures. So, after 36 hours of observation and IV antibiotics, Simon could go home.
He is still on the antibiotic fortaz, which he gets every 8 hours by IV infusion here at home. It comes in a cute little bottle that has some sort of pressure system around a little bag of medicine inside the bottle. You just hook the tube up to his central line, open the clamp, and it self-dispenses.
Simon's ANC has remained at the scary 0.0 level since Saturday. We are eager to see improvement there. Any new fever will have us going right back to the hospital, but we hope that won't happen. He has been receiving neupogen for a week now, and his count has been below 200 since Friday. His recovery from the chemo is very important to his further ability to receive therapy, so we are anxious to see his white cells and neutrophils kick in.
The big success story of the moment is Simon's platelets. He received a second transfusion on Monday before leaving the hospital. Even though his count was still acceptable at 36,000, we felt it would be easier on him to do it while he was comfortably in-patient than to drag him in later in the week with a mask on his face. He got a very impressive "bump" from the transfusion: his 30-minute post-transfusion count was 144,000. We would be so happy to kiss ITP good-bye for good.
Dr. Lemons hasn't seen Simon since last Wednesday. However, I let him know via email that the bruise over Simon's left eye is fading, and he said that's a reassuring sign that the chemo is helping.
There's still so much to hope for, and all the support we are receiving on Simon's MESSAGE BOARD is a great help. So are all the kind gestures coming our way. Grann is still here, and we can't begin to tell you how wonderful it has been to have her beautifully prepared meals, clean laundry, chauffeur service, etc. She's also getting a lot of good play time with the kids, and she's been able to serve as Simon's homebound school teacher on the days that he can be convinced to do some work on spelling and math.
February 1, 2004 "Fever and Neutropenia"Simon is in the hospital to receive IV antibiotics and close monitoring because he spiked a fever on Saturday late afternoon, and his ANC is currently non-existent. Simon's body is letting us know that the chemo he received January 21-25 was very intensive for him. Although it was a "low-dose" regimen, Simon's bone marrow is very tired out. That must be why we are seeing such a dramatic drop in his white blood cells and neutrophils.
Scary as this situation seems to be, Simon is not actually feeling sick. He has mild upper respiratory congestion. The fever was gone by morning and has not returned so far today. So, Simon is enjoying a lot of games and TV while cooped up in a hospital bed. The back-drop is more nerve-wracking for me this time, but otherwise, this hospital stay fits the mold of the standard, "boring" hospitalization for fever and neutropenia (low immunity).
Simon learned to play Battleship and Yahtzee today. He narrowly defeated his Grann in his first-ever game of Battleship. It was fascinating to watch him learn the concept of a matrix, right before my eyes. At first he was genuinely puzzled about how to name the peg-holes (A8, G2, I5, etc.). But once he got the concept, he seemed to internalize it almost instantly.
As for Yahtzee, Simon's first-ever attempt at that game yielded the following score: Mary (174), Grann (218), Simon (305). No comment!
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