WHAT'S HAPPENING Archive October 2003
October 29, 2003 "Testing, Testing"Simon's platelets dropped to 8,000 by Monday, and we opted for ITP treatment (IVIG and vincristine) on Tuesday. He had a slight increase to 14,000 by today, Wednesday.
He's got only one test to go for his work-up. He'll have a bone marrow aspirate/biopsy on Thursday. So far, he's had his CT, bone, and MIBG scans. We also sent a tube of blood to New York for HAMA testing. Well, Simon is now HAMA negative. That means his body has cleared out the anti-mouse antibody. Theoretically, he could receive antibody therapy again.
To add to the mix this week, Simon developed a fever this morning. It's a pretty convincing one, too. He's had chills, and the fever stays over 101 F (38.6 C) despite Tylenol. So, after his MIBG scan, we went to the oncology clinic for the "cancer kid with a fever" drill. They did counts (his ANC was 2.5, so he's in good shape, infection-fighting-wise) and they also drew blood for cultures to be sure nothing bacterial is brewing in the blood. And he received a dose of rocefin, a broad spectrum antibiotic. We note that this is the second time in a row that he's developed a fever within 48 hours of IVIG. The doctors don't believe there is a connection, but it's starting to seem fishy to me.
We should have a lot of test results in the next several days. Here's what we're hoping for:
October 24, 2003 "Continuing to Watch and Evaluate"Well, Simon's platelets are on the down-trend again. His count was 22,000 on Thursday. But we're leaving him alone and will check again on Monday. He has a nasty bruise on his trunk (Barbara Blodgett witnessed such bruising in New York in June) and a blood-tinged nose. So, we'll be watchful over the weekend. If he's lower still on Monday, he'll get IVIG/vincristine/steroids in some combination. His ANC (measure of immune function) is also on the low side right now at 800. 500 and below is where you start to worry, and over 1000 is where you start to relax.
We are making progress toward our goal of gathering more information about Simon's current treatment options and what his actual disease status is. On Thursday, all four of us had big tubes of blood drawn for HLA typing to see if Miriam is a match for Simon. She was very brave, and the needle had to be in for several minutes to get enough out. She sat on Markus' lap and clung to his shirt. The tears streamed down her face as she endured the pain of a needle in her arm vein for so long. Simon and Mary offered her comfort, and Markus snuggled her close. For Markus and Mary, who both went before Miriam, it was an exercise in acting calm even though the needle hurt quite a bit. We figured it would be easier for her if we were matter of fact. I wonder.
Simon's blood draw was easy, since he has his line. We also got a tube to send to New York for a HAMA test, just to see if he's still got the antibody to the mouse stuff from his therapy in June.
For next week, Simon is scheduled to have a full work-up: MIBG scan, bone scan, CT scan and a bone marrow aspirate/biopsy. The following week, Dr. Lemons will be attending the annual conference of the Children's Oncology Group (COG). Equipped with up-to-the-minute information about Simon's status, he will be able to consult various experts on what therapies to pursue next.
At home, we're gearing up for Halloween. There are a ton of Halloween events here in Utah, and we went to a carnival this evening at church. This afternoon, the kids had the fun of a package from our friends Jochen, Saskia, Jonas, and Katinka in Germany. They got some fuser beads, and Miriam received some beads for stringing as a birthday present. We got right to work: Simon made an American flag; Miriam made a colorful heart; and Mary made a geometric ornament. Vielen, vielen Dank an die Freunde aus Utting (near Munich)!
October 20, 2003 "As Is"Simon's platelets continue to yo-yo around. They seem to be in the 50,000-75,000 range for now, which is pretty darn good. That's without treatment for two weeks.
We had a lengthy meeting today with Dr. Michael Pulsipher, who heads up the Bone Marrow Transplant program at Primary Children's. He used to be focused on neuroblastoma, but, like Greg Yanik at Michigan, specialized into BMT when that branched off as a separate "discipline" from hemotology/oncology sometime in the last decade.
We have more questions than answers at this point and several limitations to work around as we plan further therapy for Simon. We'll keep you posted as we learn more. For now, we are planning to do HLA typing on all of us to see if Miriam is a match for Simon. All four chromosome #6 have to be the same in both kids--that means that Markus and Mary would have had to give them both the same two. The chance is one in four.
Why do we want to know whether Miriam is a marrow match? We may be considering a procedure that involves a "mini-transplant" using donor marrow. Before we can even think about it, we need to know if the sibling connection is an option.
Over the next several weeks we also expect Simon to undergo tests and scans so that we have a better sense of his current disease status. From looking at him (except for the mostly missing hair and the occasional blood tinge around the nostril), you'd never guess he's been fighting cancer. And he remains a wonderful person to be around and learn from.
Yesterday at church, the children lit candles in the intergenerational service to talk about their "milestones". (The children file to the front and make brief announcements via the microphone of important happenings, like losing teeth, having a birthday, etc.) Simon had been planning to mention his new shoes. But the minister said that since we were using candles, she wanted them to think about something very meaningful to them. Here's what Simon said:
"My name is Simon, and I light this candle because I love my family."
At the adult service, Mary recounted this little story and stole Simon's exact words to light another candle.
October 13, 2003 "Life Goes On"Simon missed a good chunk of last week at school, but Wednesday was his only really bad day. He was able to go to school on Friday (which is always a half-day here in Salt Lake City!). He aced his spelling test, nailing words like "it, in, big, did, thin, grin, his, him, is".
We were bummed to learn that Simon's platelets were at 6,000 on Thursday, an indication that last week's therapies of IVIG, vincristine, and steroids did not work to counteract his auto-immune destruction of his platelets. Very frustrating, especially when it all takes so much time to do! So, that left us again at the "do nothing" point for the weekend.
So, we went hiking! On Saturday, the four of us took a spritely hike (1.5 miles) in the hills behind the Red Butte Garden. (That link goes to the Children's Garden page because it's pretty cool and because I couldn't find a photo of the nature hike area on the Web.)
On Sunday we joined friends Tina, Bart, Granger, and Carter for a hike in the western side mountain range, the Uintahs (you-IN-tuhz). Then we drove a winding Alpine Loop and caught the last gasp of golden aspen leaves, followed by dinner out in Park City.
The kids were both really great on the hikes! Simon needed occasional carrying on Markus' shoulders (and Miriam needed carrying, mostly because Simon was getting carried...). Still, they both had many spurts of energetic marching along, and I think they are on their way to becoming real mountaineers. Miriam is a great appreciator of the natural world. At one point we were surrounded by rising cliff-like mountains on all sides. She gazed up and remarked, "Look at these BEAU-ti-ful mountains!" (Oma and Opa will be proud, and I hear a hint of Linda Britt in Miriam's enthusiastic appreciation of nature.)
By Monday, Simon's platelet count had crept up to 24,000. We continue to "do nothing" and will check again later in the week. A couple of things are pending a more stable platelet situation for Simon. 1) A second round of irinotecan (chemo). 2) An attempt to harvest stem cells for unspecified future use (pending insurance approvals, etc.). Relative to the other situations, it will soon be time for another round of testing to see how he's doing on the inside: bone marrow aspirate/biopsy and scans.
October 8, 2003 "A Hard Patch"Simon's platelet count had indeed dropped quite dramatically over the weekend (good thing we were nonchalantly enjoying Yellowstone). His Monday morning count was 7,000. That felt like a big bummer after he'd been stable around 100,000 for quite a while. So, he had treatment on Monday for ITP, which was vincristine and IVIG. He's had both many times before by now. His nurse commented that he's going for a record number of IVIG infusions. (We've heard that sort of comment before--like a record number of MIBG scans, etc. It's not really an honor he needs, let me tell you.)
Tuesday morning he was tired and droopy, with a low-grade fever, so he stayed home from school. By evening the fever was around 102 F. We called the on-call doctor and got the go-ahead to stay home for the night, since Simon's other counts were very strong on Monday. (That means he's not in potential danger of a rapidly septic situation, since his white cells are there in enough number to do the job.) However, we were advised to bring him in this morning and had no trouble agreeing to that after his fever spiked to 104 F in the night.
It was a long day at the hospital, and not a fun one for Simon. Nothing obvious is going on besides the fever, but he received IV antibiotics as a precaution. He also received inhaled pentamadine (a monthly routine administration of a different antibiotic to ward off a virulent form of pneumonia). That was an unpleasant, cold, moist air blowing in his face for way too long. All he wanted to do for most of the day was to lie down, but construction at the hospital has temporarily displaced the Hem/Onc clinic, and Simon was bounced from one spot to another and finally got into a bed in the early afternoon. He also had a dose of steroids as a further boost to his platelets (which were up a bit to 13,000 today--always better than a drop).
Poor Simon. It was a pretty yucky day. The big highlight, though, was a 10:00 am game of televised Bingo. Kids throughout the hospital can play from their rooms and call in to the broadcast site to say Bingo! and to tell jokes. Simon had a lot of fun with the Bingo, and he lit up when he heard his own name mentioned on the television. He told a joke, which the host passed on to everyone else. It was a joke that came from this Web site many months ago, from the Hopkins family (devoted MESSAGE BOARD contributors). Q: "What's black and white and black and white and green?" A: "Two zebras fighting over a pickle!" The host was so tickled with the joke, she could barely repeat the punchline through her laughter. Simon was thrilled. It's a very clever means of interaction for the kids.
If you're interested in what Simon missed at school today, check out the post on his MESSAGE BOARD from Grandma J. Simon and Mary had worked with Julie B. from Child Life at Primary Children's to arrange a presentation about germs for his class. Too bad Simon had to miss it, but we figure his absence just speaks for the need for good hygiene to keep him healthy!
October 5, 2003 "A Trip to Yellowstone"We've just returned from a weekend at Yellowstone National Park. Fabulous early fall weather. Elk, mule deer, bison, coyotes a-plenty. Steamy geysers and colorful hot springs. What an amazing place!
We joined a crowd of folks for the last weekend at the Old Faithful Inn, which closes for the winter on October 6. What an incredible structure it is!
We expect we'll try the 6-hour drive to Yellowstone again. The kids did great (even if they complained from time to time). They walked a bunch of boardwalk trails, rode long hours in the car, and held their faces in the sulphur-smelling steam from the hot springs and geysers.
On the cancer front, we'll be checking Simon's counts Monday morning. He had a full, uninterrupted week of school last week! We'll see if his slightly bloody nose is a reaction to drier air, or if it indicates a platelet drop. We'll let you know how things proceed. Meanwhile, you can send Simon strong wishes for patience as he begins to confront the concept of spelling tests at school!
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