WHAT'S HAPPENING Archive September 2003
September 29, 2003 "Big Numbers Today!"Boy were we pleasantly surprised to learn today that Simon's counts are strong across the board. Since his last check on 9/24, his ANC jumped from 400 (neutropenic) to 15,000. Wow! The top end of normal is 10,000. So, he doesn't need any more neupogen to stimulate his counts! (It is expected that his count will drop by one half the day after neupogen is stopped, and continue to decrease until the body's own cell-production system takes over and things settle at a lower count.)
In addition to that good news, Simon's platelets were an ever increasing 118,000. So, he's continuing to go up even without further treatment for his low platelet condition. Our doctor cautions us that we have probably not seen the end of Simon's ITP, but for now we're happy that he can spend a week treatment-free.
One minor downer is that Simon is experiencing hair loss post-chemo. We were enjoying his newly achieved full head of hair. Oh well. He's pretty funny about it, and he grabs at clumps of hair to show that, yes, it is falling out. The part that bugs him is getting hair all over his pillow and on his face in the night.
The plan is to check counts again later in the week and proceed with the second round of irinotecan/vincristine chemotherapy starting around October 6. When he recovers from that cycle, he will undergo evaluation for his current disease status, and then we'll be making decisions again about what to do. If he's looking pretty clean, it may be time to start Cis-retinoic acid (mega vitamin A that has been shown to slow the growth of neuroblastoma in a setting of minimal disease).
September 27, 2003 "Feeling Good"It has been a pretty normal week since I last wrote. Miriam had a fun birthday party. Grann's visit was a big success. She got to be a volunteer in Simon's class one morning (as a retired elementary school teacher, she had a lot to offer!). She also went along, as did Miriam and Mary, on a first-grade field trip up the Big Cottonwood Canyon in fall color splendor.
Simon's 2-week chemo regimen ended on Saturday (9/20). He continued to experience diarrhea for a couple of days, but now he's stabilized. The best part is that his platelet count has held strong. We had planned for him to have the next treatments for ITP (low platelets) on Thursday, but his count was a strong 93,000 (normal is still over 150,000, but for Simon, this count is excellent). So, he was spared any further treatment at all this week. He is currently getting daily neupogen shots at bedtime to help him recover a healthy white cell count post-chemo. It's not his favorite moment of the day, to be sure, but he is so mature about doing it these days. It's hard for us to believe that it was nearly two years ago that he had his first neupogen injections (January of 2002).
Simon looks really good right now. His hair has grown in nicely (he last lost it in May), and the bloating from many courses of steroids is now gone. His cheeks are rosey, and his mood is usually quite chipper. He had some tired patches during the week and complained about the rigors of a long day at school (but all the kids do that!).
Our friend Amber is returning from Michigan for another visit this evening. We're hoping to get all five of us out in a canyon for a short hike, maybe on Sunday.
September 19, 2003 "Higher Maintenance, but Getting Along"Wow, I've left this page for a whole week without an update. It may be difficult to get all the details, but the basic news is that we are doing a lot of stuff to keep active treatment for ITP (low platelets) and chemo going simultaneously.
Week one of irinotecan (chemo) was complete on Sunday (9/14). Simon's counts were good enough for him to go to school on Monday (although he spent the morning visiting his new pediatrician for a follow-up to get him established as a patient). Tuesday he spent receiving IVIG and vincristine for his ITP. His platelets were up to 72,000, so he was spared the massive dose of steroids. Since he was already at the clinic, they went ahead with dose one of the second week of irinotecan. That was technically a day early, but it spared Simon the need to go back on Wednesday.
He actually had a day at school on Wednesday, but Thursday morning he was feeling so tired that he didn't want to go to school. Sure enough, his counts showed he was dropping into mild neutropenia with an absolute neutrophil count (ANC) of 400 (where under 500 is considered neutropenic and low-immunity). His hematocrit/hemoglobin was also dropping, and the hospital advised a red cell transfusion.
We stopped in at 11:30 am for them to draw a tube of blood to "type and cross" to find a suitable unit of blood for Simon. We were asked to come back in 90 minutes to begin the transfusion. As it turned out, Simon and Mary spent a long afternoon waiting for the blood to show up. By 4:30 pm, we had the unpleasant news that, although Simon was fully premedicated with tylenol, benedryl, and methoprednizone, they did not have a blood match for him yet. So, we left, with Simon crashing to sleep in the car with all the drugs in his body, poor guy.
We collected Mary's mom, Ann/Grann, at the airport and proceeded to have dinner out at a fun Mexican place called Rio Grande. Simon woke up enough to eat piles of tortilla chips and fresh salsa, followed by half a beef taco. But he was struggling to stay alert after his appetite was satisfied and lobbied vigorously to go home.
What do you do when your child is already neutropenic but has two days of chemo left? Do you stop the chemo, or do you push ahead and hope that the anti-cancer effect will outweigh the further (temporary) depletion of his bone marrow? What do you do when a kid is borderline for a blood transfusion, but the blood bank finally has a match after 10 HOURS? (The word "antibody" comes into play yet again. The blood bank needed so long to find blood for Simon because he has enough odd antibodies to red-cell types in his system to make it hard to find a unit that he won't just kill right off.)
We find ourselves making decisions now on a shifting and ambiguous basis, at best. We decided today to go full steam ahead and complete the chemo course (tomorrow is the last day) and get the red cell transfusion today, on the probability that Simon's counts will drop further from the chemo over the next week. Ugh! None of the choices feel very optimal for Simon right now. Fortunately, he is bearing up well, despite all the weird stuff being pumped into him and the diarrhea-enhanced flow of stuff going out of him.
We're hoping for some good days with Grann (the kids were SO EXCITED about her visit approaching), and we're planning to have a fun time on Saturday, celebrating Miriam's 4th birthday!
September 12, 2003 "Handling Chemo Just Fine So Far"Simon has now had two doses of chemo at home. Yesterday, our visiting nurse, A.J., trained Mary and Simon on the administration. Today, Mary and Simon went it alone. Simon's platelets are hanging in there at 42,000. We will do another 2 doses over the weekend and then take a break on Monday and Tuesday.
Friday afternoons are fun for the kids because they have their weekly visit with Tamber, a social worker from Community Nursing Services, our home med company. They scheme and plan for several days about what they want to play with Tamber. And they compete for her attention when she's here for her hour. This afternoon they did a really good job of all playing together, and we did Simon's 60-minute chemo infusion while Tamber was here.
Both kids seem to be happy and stimulated by the good stuff going on at their schools. Miriam dances around, sings new songs, and brings artwork home each school day (Monday, Wednesday, Friday). Simon has so many new things to tell from school each day that he can scarcely get in a breath amid his lengthy sentences. On the phone this evening he brightly told his Grann that "[School] is really fun!" It's really great to see them both thriving and making new friends.
September 10, 2003 "Platelets Up; Chemo Started"Simon's platelets are responding to all the steroids and to yesterday's IVIG. Today's count was 52,000. So, we agreed that he is strong enough to handle a 2-week low-dose course of irinotecan/vincristine. He had dose number one today. Tomorrow, a nurse from our home medical company will come by to train us on administering the chemo at home ourselves. We have plenty of experience with giving Simon medications through his line, including using a pump, but this will be the first chemo we've done from home.
Simon is taking it all pretty well. He seems happy and stimulated at school (although he said he was so tired today that he almost fell asleep during recess...). He's been pretty hungry and moody, but he won't get more steroids until next week.
It's an odd feeling to be propping up his platelets with pretty intensive medications, only to introduce a chemo that is likely to drop his counts again. But the doctors' consensus is that his neuroblastoma should not be left any longer to its own devices.
September 8, 2003 "Feeling Good; Platelets Dropping; Chemo Postponed Again"Several people have alerted me that I left things hanging a bit on Friday evening. Sorry about that. Simon stayed fever-free for the remainder of the weekend. But a little bruising and more blood-tinged mucous told us something was amiss with his platelets.
His platelet count this morning was 21,000. It's been in a free-fall the last two weeks, after Simon's most recent high of 107,000. Bummer. So, we are back treating ITP (low platelets) in earnest with various interventions to suppress his over-active immune system and trick his spleen into not destroying platelets just because an errant antibody says so. What does this mean? Simon had a whopping dose of steroids today (600 mg--where his current dose had been 10 mg every other day--no, that's not a typo).
Tomorrow we'll check his counts and he'll probably get IVIG and vincristine. These are the two infusions that seemed to offer the most improvement last time (August 7 was the last time Simon had IVIG=immune globulin that blocks off the spleen, preventing platelet destruction).
Our doctor hopes to get Simon's platelets up high enough to give irinotecan (chemo against neuroblastoma). He is increasingly concerned about the lengthy delay since Simon's last anti-cancer treatment (early June). The platelet thing is getting a bit dicey, and we hope this approach will end up moving Simon forward and not setting him further back. We will take it one step at a time and make changes to the plan as needed.
A nurse at the hospital today commented that Simon is the first patient she's ever seen with both ITP and neuroblastoma. What a distinction.
Meanwhile, he's feeling pretty good. We had a great time at the Utah State Fair on Sunday. Simon wants to go back and do the rides again! It lasts until September 14, so we probably can go back.
September 5, 2003 "Some Bumps Along the Way"It has been a long-feeling week, but mostly one filled with finding comfort in new routines of school for the kids. Simon has now had two weeks of school. We all really like his teacher, Ms. Eaton, and are finding a warm reception from the school staff and administrators. They are eager for details of Simon's care and what they need to watch out for. On Thursday, Simon and Mary did a small presentation in the principal's office about care of Simon's central line (broviac), his periodic low blood counts, and his Web site. The group included 2 secretaries, the librarian, the computer teacher, Ms. Eaton, the nurse, and the principal. Simon made a big plug for the SIMON'S FAVORITES page on his site, and I think he genuinely convinced the group that he can monitor himself and let them know if he has any problems (such as a wet dressing). It is wonderful to have the school take such keen interest in Simon.
Miriam also started preschool this week at the Virginia Tanner Fine Arts Preschool. She is quickly making friends, and she eased right into the routine of being dropped off to her teachers from the car in an efficient, "drive-by" arrival and pick-up process. She's having lots of fun with music, singing, dance, literature, and visual art. Anyone else want to go to preschool?
As for the aforementioned "bumps along the way", Simon has experienced a big drop in counts this week. It was a risk to eliminate his vincristine last week, and that risk resulted in a platelet count of 40,000 on Wednesday. (That 107,000 last week sure felt good while it lasted!) In addition, he had a dramatic drop in his ANC (absolute neutrophil count) to 500 on Tuesday, and back up to 1000 on Wednesday (normal is 1,800-10,100). The platelet drop is easily explained by ongoing issues with ITP (low platelets). The drop in ANC is probably caused by the presumed virus that has had Simon wiping a clear runny nose for the past week.
The drop in his ANC was enough to postpone plans to start chemo on Wednesday. Instead, Simon received vincristine only for his ITP. He also got inhaled pentamadine. (We almost never mention that medication, but it is an antibiotic that Simon has been getting monthly since diagnosis to prevent a severe form of pneumonia.) He continues on his mini-dose of steroids at home. Despite all this stuff going on, he looks terrific. His hair has grown in beautifully. The super-puffies of the steroids seem to be over. He has great color, and his eyes have their special sparkle. At the oncology clinic, everyone remarked on how great he looked. I told them that they were finally seeing the "real" Simon. He's had so much screwy stuff going on since we got here that they really haven't seen him at his best until now.
The plot thickened a bit this evening when Simon complained of pain in a lot of places, had a bit of a blood-tinge to his nose run, and generally was out of sorts. We found that he is running a low-grade fever. Boo. After consultation with the doctor on the phone, we've decided to let him sleep at home, since the fever hasn't gone up higher. We hope it's a regular virus. However, with his ANC somewhat in doubt, we need to be ready to hop in the car and head to the emergency room if things look worse. It's been a long time since Simon's last bout of fever/neutropenia (late April was the last, I believe). Let's hope we can keep him home.
Finally, we did an amazingly wonderful thing today. We bought ourselves a PIANO! We had vague plans of getting a piano eventually, and today we happened on a piano sale on the University of Utah campus. We are the proud home now of a simple walnut upright piano by Baldwin. For those of you who don't know, Mary is a singer and Markus is a violinist. Neither of us is a pianist per se, but Mary especially uses one for her singing (and wishes all those many piano lessons had left her with more skill...but she would have to practice...). We hope the kids will take an interest in playing and possibly begin lessons. Miriam is quite intrigued. Simon is a little annoyed, since the piano adds yet another thing to distract his parents' attention AND it makes noise when he wants to watch a video. But we still hold hope that he will develop his own relationship with the piano over time. As I write this update, Markus (who has never had piano lessons but is an all around good musician) is exploring the keyboard and playing little melodies. What a huge treat this feels like!
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