WHAT'S HAPPENING Archive April 2003
April 28, 2003 "Post-Chemo Hospital Stay"Simon's chemo went well, with Easter Sunday as the last day. During the ensuing week, Simon and Miriam played everyday with their long-time babysitter, Agustina. Both kids had a week off from their normal routine because of spring break at the school and at Linda's. They spent some time at our place and some at Agustina's wonderful new house. See the PHOTO GALLERY for pictures of a good-bye party for Agustina and her family when they moved out of Family Housing in March.
By Thursday (day 9 after the start of this chemo round), Simon's platelet count had dropped to 30 (normal=150-450). The nurse predicted that Simon would need a transfusion by Monday and advised us to watch for symptoms of low platelets (bruising, uncontrolled bleeding, and "petichia", little red dots on the skin). On Saturday (4/26), Simon took a fall while playing tag that gave him a big bruise on the back of his thigh. What looked like scratch marks at first turned out to be little red dots. We noticed the dots in several places.
At bedtime on Saturday, Simon had a mild fever (99.5 F) and was complaining of mild ear pain. By 5:00 am, he was more uncomfortable, and his fever was up to 100.7 F. We called the on-call doctor and were advised to be relaxed about the timing but to bring Simon in through the Emergency Room for evaluation. As the morning progressed, he seemed to be feeling much better. Meanwhile, Miriam was getting droopy. She turned out to have a temperature of 101.7 F. After a second phone consultation with the doctor, we took our healthy-seeming Simon into the emergency room and put our unhealthy-seeming Miriam down for a nap. Odd mix, eh?
Simon's platelet count was down to 7. They normally transfuse at 20 or lower, so platelets were ordered immediately, and Simon was admitted for the night. The biggest concern with low platelets is bleeding inside the brain because the blood gets too thin. This complication is rare, but it's one of the reasons why the doctors monitor platelets so closely. This morning his platelet count is 81. That's considered a terrific "bump" (the technical term for the increase in blood cells after a transfusion).
Simon's Absolute Neutrophil Count (ANC) is 400 today, after being 200 upon admission on Sunday. That's going in the right direction, but it's still in the neutropenic range. And that's why we're still here. We haven't seen his attending physican yet (who happens to be his primary oncologist, a very busy Dr. Mody), but we hear from the residents that they want to keep Simon for 36 hours to be sure nothing bacterial shows up in his blood cultures. That means another night here. Simon doesn't seem to mind hanging out in front of multiple Pokemon videos and "channels" on TV (our TV at home only gets the "blue" screen and plays videos/DVDs). He also had a fun phone call this morning from his classmates in before care at school.
We are still working on details for getting Simon to Memorial Sloan Kettering in New York City for antibody therapy. We hope it will happen in May. We've got approval from our insurance to go out for evaluation, and we're hopeful that costs of the therapy will also be covered.
April 18, 2003 "Now Simon is Back in Chemo"The past 2+ weeks have been eventful. We're sorry it's taken a while to get the latest onto Simon's site.
Simon had a total of 3 "delays" in getting back to chemo after the round that occurred in early March. His bone marrow is not rebounding as well as it did before transplant and MIBG. This decreasing bone marrow resilience is typical for a "heavily pretreated patient" like Simon. It is somewhat worrisome because it compounds issues faced in offering Simon treatment. However, the good side of it is that the delays have given Simon several solid weeks at school, and he's been loving it. His teacher describes him as "blossoming academically". No wonder, if he finally gets to go to school! He told his nurse, Martha, this week that he plans to be a scientist. She asked him what kind (chemist, physicist, biologist, etc.) and he said, "All kinds."
Aside from the earlier "marathon" hospital stay of five nights for a fever/pre-pneumonia in mid-March, Simon has had little trouble this chemo round. He had an ear infection last weekend and went on a five-day course of zithromax, which ended two days ago. The good news was at the 6-week post-chemo point he had very robust blood counts:
Hemoglobin: 10.9 (normal=12.5-16.0)
Platelets: 107 (normal=150-450)
Absolute Neutrophil Count: 5.3 (normal=1.8-10.1)
As a result, Simon's chemo has been changed again to get him prepared for the antibody therapy. Dr. Kushner prefers to prepare patients with one or two cycles of high-dose cytoxan and topotecan. However, Simon's doctors feel his marrow is too weakened for high-dose chemo. Therefore, he's on topotecan/cytoxan at a low dose. It's the same dose of these two medicines that he received April-August 2002 for 5 rounds total. Of the chemos he's had so far, this one has been the easiest on Simon. We're hoping it's that way this time, too!
If plans work out, Simon will go to New York City toward the end of May. He'll have a 3-day outpatient evaluation and then begin the therapy. What's involved in this therapy? Well, antibodies to neuroblastoma are grown in mice, and then the "mouse juice" is injected into the patient to fight off the cancer. From the Neuroblastoma listserv, we are aware that patients do multiple rounds of this therapy. We still have a lot to learn about it. Side effects include brief, but severe, pain. This will be the first therapy for Simon that is intended to enhance the function of the immune-system, as opposed to the chemo and radiation therapies that focus on destruction of cancer cells through toxicity.
For more information about the trial we believe Simon will be eligible for, go to this link on the Memorial Sloan Kettering Cancer Center Web site.
Easter weekend will be a bit "different". Simon's chemo started on Wednesday this week after delays to discuss appropriate chemo in preparation for the antibody therapy. That means he'll do days 4 and 5 on Saturday and Sunday as an outpatient upstairs on the 7th floor. I'm sure we'll find a way to hide a few eggs, though.
One other note. Simon's Grann and Grandad have returned from an Oberlin Alumni tour of China. They had a fabulous time. To be extra careful around Simon, though, they need to stay away from us in "quarantine" for 11 days. The possible risk of exposure to SARS would be severe for Simon. So, we hope to see them after a week or so.
April 1, 2003 "No Chemo This Week Afterall"Simon's platelet count was 65 on Monday, so he's going to wait another week for chemo. As a reminder, the normal range for platelets is 150-450. Doctors prefer to see a platelet count over 100 to administer chemo, but Dr. Mody has been ready to give Simon chemo at 75 (ore even a bit lower). Since he's still below that, we're waiting a week to let Simon's bone marrow have more time to recover. It would be great to see a strong platelet count again.
This is the lengthiest chemo cycle so far for Simon. In the pre-transplant part of his treatment, he was generally ready to go again after 3 weeks. Since January, he's needed at least 4 weeks per cycle. With the encouraging news last week that Simon's bone marrow tested negative for neuroblastoma, there's some time to wait a fifth week for the marrow to recover without any concern that the marrow is crowded out by tumor cells. Instead, the marrow is just "bone tired" from so many assaults. Dr. Mody says Simon's response is typical for a post-transplant patient.
So, we'll be eating some pineapple (for bromelein to encourage plateles), and Simon will continue to enjoy a whole week of freedom to attend school and not go to the hospital the rest of the week!
We finally resumed Iscador (mistletoe) injections today. We got off track with these injections many weeks ago and needed new supplies to back Simon's dose off to a lower level to restart him on it. Hopefully the Iscador will help him deal with the continuing chemo better than he's been able to handle it without Iscador. As I recall, we got away from Iscador when Simon was forcing down a yucky anitbiotic, and it seemed like too many uncomfortable medicine moments to impose at the same time.
Simon's school is taking a field trip tomorrow to a museum about the human body, where you can apparently walk inside models of the body's parts and functions. Sounds pretty cool. Since we can't go along with him, he's promised to tell us all about it when he gets back.
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