WHAT'S HAPPENING Archive August 2003
August 29, 2003 "The Current Plan"First of all, Simon's platelet count was 107,000 on Wednesday this week! That's one of the best numbers he's had in over half a year. He was seen by Dr. Lemons at Primary Children's, and we've come up with a probable plan for the next several weeks, pending a few more questions to other oncologists involved in Simon's case.
For Simon's ITP (low platelets): he will continue on the small dose of steroids every other day until early next week. His dose of vincristine for this week was skipped. If his platelets drop significantly, he'll get vincristine again next week. As Simon is weaned from ITP interventions, it is expected that his count will drop.
For neuroblastoma: Dr. Lemons is comfortable with naming Simon's current disease status (minimal) residual/persistent disease. This designation is based on the fact that his HMA/VMA levels are not elevated (that's the urine marker); there has been improvement in his MIBG scan; there has been no change in his bone and CT scans; and his bone marrow tested negative for NB in June and July. It is truly difficult to assess the amount of disease Simon currently has and how active or "indolent" it is.
Simon's "clinical picture" is also an important part of determining what to do next. Currently, he's a little plump (the dietician says it's steroid-induced water weight), and he has a fair amount of energy. He's been able to walk the 5 blocks to and from school the last couple of days. He can still outrun us at tag. In between his energetic moments, he has times when he closes his eyes, tilts his head, and looks ready to go to sleep on the spot. Also, he complains of pain in his legs from time to time. These are areas (just above the knee on the back of the leg and mid-thigh on the front of the leg) that "light up" on his MIBG scan. So, we are concerned that the pain is cancer-related.
With all of these factors in mind, the current plan is to have Simon start a low-dose regimen of chemotherapy with irinotecan and vincristine, given over 2 weeks. He will probably start that next week. He had this chemo in a 1-week regimen twice last winter/spring and tolerated it fairly well. The lower dose may make it even easier. We will be able to give the chemo to him IV at home, which means less disruption of his routine. Also, the vincristine should continue to help his ITP improve. The chemo regimen is intended to be repeated after one week off, counts permitting. Given Simon's history, he may need a longer recovery time. He will be rescanned after 1-2 cycles, and we will determine where to go from there.
On the fun front, we're expecting a visit this weekend from Mary's childhood (and adulthood) friend Sally Blodgett Olson. It will be great to have her here!
August 23, 2002 "News. Good News, We Think"It was a test of patience to get all the way to the end of the day on Friday before learning the results of scan comparisons for the scans Simon had August 12-14 here in Salt Lake City. Now there are films from every scan he's ever had, right here in the radiologists hands. Thank goodness none got lost in transit and they were finally matched up to the right places in the hospital here to get read.
The results appear to be as follows:
So, what does all this MEAN? We hope to learn more next week. Perhaps Simon needs an MIBG scan of his head. Perhaps we need to ask the radiologists in New York to have another look at their previous scans. We will be talking with Simon's doctors here and hoping to get a lot of input from the doctors in New York and Michigan as well. Simon is likely to need additional anti-cancer therapy soon, but the choices are somewhat limited. Further chemo is unlikely to beat his disease, and antibody therapy is ruled out, at least for now.
For those who are still platelet dancing, there's good progress to show. Simon's platelet count was 92,000 on Thursday. I believe I forgot to let you all know that good news. Simon did get another dose of vincristine to help him avoid a platelet crash when no longer getting treatment for his ITP (the low platelets). He is still getting a mini-dose of steroids, every other day, but the weaning off process will be complete sometime next week. His mood does seem much better (and his appetite less demanding) now that he's getting off the steroids.
On the "normal" side of things, we are getting ready for the kids to start school! Simon starts on August 27, and his teacher will be a Ms. Eaton. We haven't met her yet, but Simon is all registered and ready to go. Miriam will start pre-school on September 3. Markus and Mary went to an orientation at her school today, and it was a lot of fun. She'll have music, art, dance, creative writing, literature, and singing. We love it!
Amber Dimkoff headed back to Michigan this morning after many good works during her 10-day stay with us. Mary and Amber had the pleasure of a hike on Friday up to Lake Blanche in a canyon just a 20-minute drive out of the city. (If you follow the link, just imagine the photo without all the snow!) It was a GOOD hike. We were well-tested by the 2,500 ft climb over a 2.8 mile ascent. The scenery was beautiful, and the exercise felt (mostly) good. We didn't even mind (too much) the steady rain that accompanied the final hour of our descent. Boy, did we get soaked!
August 20, 2003 "No News"In case you're checking, we don't know anything new today. All the scans, from day one to the present, are now physically located in Salt Lake City at Primary Children's. We are hassling the doctors for speedy reading and news. If Simon's looks and mood are anything to go by, the news must be good. He had a haircut yesterday (so did Miriam), and he looks extremely cute and well put together. His steroid puffiness is decreasing, and his eyes do their amazing sparkly dance whenever he has something animated to say (which is often).
You guys keep on dancing, too!
Oh, we did learn that Simon is still HAMA positive. It's unlikely to matter, since he's ineligible for further antibody therapy at this point. But, his human anti-mouse antibodies don't seem to be going anywhere any time soon. Let's hope that means he's also got super tough anti-neuroblastoma antibodies in there, miraculously after his single cycle of treatment. (That's another one for all us shameless optimists.)
August 19, 2003 "Still Waiting on Scans; Platelets are Holding"Well, if we knew anything from Simon's scans, we'd tell you. But we don't. We do know that the scans are slowly but surely assembling here in Salt Lake City. Simon's massive pile of scans from the University of Michigan was still in New York and has come to us via overnight mail. At least part one arrived. The other got a little delayed and will be here tomorrow. We hope. It's a lot of film. When I presented the folders to Dr. Kushner in May, he commented that it was about the biggest pile he'd ever seen on a patient. (How can that be true, when so many kids have been at this for years and years? But that's what he said.)
Meanwhile, the bone scan from May in New York was not in the initial request, so that has been requested now and sent, I hope. The bone scan may be the most important one for comparison at this point, since last week's scan indicated some areas of concern in Simon's skull. We are managing to wait out this awful ambiguity quite peacefully, but I sometimes wonder how.
Today Simon's platelets were hanging firm at 79,000. That's good news to us, since he kept that high a number even though he received less support (no IVIG this week, and half the steroids since Friday). The doctors want to repeat vincristine on Thursday. After that, we can cut the steroid dose again and slowly taper it to nothing. We will not be sorry to be living without steroids.
Markus has returned this evening from presenting at the American Sociology Society meeting in Atlanta. He starts his teaching career at the University of Utah TOMORROW morning. It's such an early start to the academic year. He seems pretty mellow to me, and I'm glad he's taught a core MBA course in Organizational Behavior a couple of times before.
So, send good thoughts to Markus, keep up the platelet dances, and don't stop hoping for NED or something on the road to NED when we finally get actionable scan reports!
August 15, 2003 "Scan Ambiguity"We do not have definitive results from Simon's scans, but the preliminary results have us and the doctors scrambling for older scans for comparison. It is a complicating factor that Simon's scans of the past 6 months have been done at 3 different institutions. Each place has different technology and standards, making the reports (and presumably the actual films) somewhat incompatible.
Here is what we have been told so far. Simon's bone scan of August 12 appears to indicate increased and new abnormal activity (=probably metastatic cancer) in his skull. He has had involvement in his skull all along, but recent bone scans (over the past 9 months or more) have not indicated any abnormalities in his entire body. So, apparent lesions in his skull is a worrisome finding, if it bears out as real, especially by comparison to previous scans. The bone scan also indicated abnormality in Simon's femurs and a couple of other familiar spots.
On the other hand, Simon's MIBG scan of August 14 seems to indicate abnormal activity in his right humerus (upper arm). And nowhere else, including his skull. That finding is fantastic, if it bears out as real in comparison to prior scans. It would mean that many previously diseased areas are no longer showing active neuroblastoma.
So, what to believe? The two findings seem to be in direct contradiction with each other. We met a new doctor on Friday, Phillip Barnette, who is helping us chase scans and answers in the absence of Richard Lemons, Simon's lead oncologist in Salt Lake City. (The power outage "back east" has made communicating with Michigan and New York impossible today.) The first thing Dr. Barnette said to me and Simon yesterday was that he really likes Simon's Web site and that he had been at the They Might Be Giants concert, too!
We are trying to take the worrisome/encouraging scan reports as lightly as possible, since we have at least the weekend to wait things out before we get more clarification. If you are not currently exhausted from platelet dancing and NED dancing, you can consider what dance might help the most now. Hmmm. If you're a shameless optimist, then you should continue with the NED dance (see August 13 entry for what that means). If you don't like to get your hopes up too high, you could opt for a more conservative "no progression" dance. Over the months and months of Simon not showing signs of decreasing disease, we have become accustomed to thinking "stable" or "no progression" is an excellent report. Take your pick. Or try both!
We are enjoying the companionship of Amber Dimkoff, a University of Michigan graduate who worked with Mary for several years at Arts at Michigan. Amber is great with the kids and is working wonders on various areas of the house that need further unpacking and organizing. Today she got the kids' art supplies in ship shape.
Simon has been riding his bike all the way to our favorite new playground (about 8 blocks away). He really misses the neighborhood and his friends at Family Housing in Ann Arbor. He notices it's a big loss not to be able to wander out of a townhouse to the communal play structure. Our little yard on a residential street just doesn't offer the same thing.
Miriam received an amazing and touching gift today from our friends Rachel and Lucy in Ann Arbor. We met them through Amber and her beau, Mark. Rachel asked Amber to bring her American Girl doll (named Emma), plus Emma's bunk bed and extra clothes, all to Miriam. Miriam has played with these items numerous times in Rachel's room. I guess Rachel (heading into her senior year of high school) has "outgrown" Emma. We are so touched that she chose Miriam to be the next girl to play with Emma! Miriam is thrilled, and I can't tell you how long she's yearned for a baby bunk bed. Thank you Rachel and Lucy!!
August 13, 2003 "Up, Up With Platelets!"Simon's platelet count today was 79,000 (where normal is 150,000-450,000 and "acceptable" for a cancer patient is anything above 50,000). For Simon, that is a huge number. It's especially encouraging that his count continues to go up, now that he's getting only half the steroid dose. He is scheduled for another round of IVIG and vincristine tomorrow. We have not discussed with the doctors whether this plan will remain, or if waiting for Simon's own recovery is appropriate.
Simon is in the midst of scans. Last week's CT revealed nothing abnormal. Yesterday was a bone scan, and tomorrow is MIBG. We hope to have a complete picture of his current disease status by the end of the week.
Is anyone else out there hoping for "NED"? (="no evidence of disease", the general term used for neuroblastoma patients instead of "remission", since this cancer has such a high relapse rate.) I admit I've never dared to hope for it before, but after his marrow cleared in June, I'm wondering if it could possibly be so. On the other hand, Simon does complain of pain in places where he has previously had cancer present. (Is it steroid effects? bone marrow working hard? too much sitting around? cancer in his bones?) We'll keep you posted when we hear something.
If the platelet dancers aren't too tired out, how about trying an NED dance?
August 11, 2003 "One Month in Salt Lake City"We have now been in our new home for a full month! Things are feeling quieter now. Simon is getting his steroids at home every other day via a single 40 mg dose that requires a pump and 50 minutes to infuse. (I know that sounds impressive, but we've kinda been doing that sort of thing on our own for a while now...) The daily dose was a 10-minute "push", which we were doing by hand, twice daily. So, the upshot is that when Simon gets the dose, it's time consuming, and it also hits his system pretty hard with the drug. Today is a steroid-free day, and we're planning to enjoy it!
Do I need to mention that the sun is shining here?
Simon has appointments Tuesday-Thursday for scans. His next scheduled blood count check is Wednesday. So, we're hanging loose. Maybe we'll go the Utah Museum of Fine Arts and "Hang With the Masters". (That's a very appealing advertising campaign slogan for the museum. They even have a photo on the local buses of kids hanging by their arms on a jungle gym, alternating with images of fine paintings from the museum. Quite clever.)
I've just read all the fun posts on the MESSAGE BOARD from Simon's platelet dancers. I just told him about the many people doing the dances and said they must be working! He smirked a bit at me and then proceeded to enlighten me along these lines.
Simon: "What's a platelet dance?"
Mary: "Like a rain dance, you know, that people do when they hope it will rain. So, a platelet dance is to help you get more platelets."
[I would like to think he took a moment to imagine a platelet dance--goofy, beautiful, or somewhere inbetween...]
Simon: "Rain dances don't really help rain come. It's just an imaginary thing."
Mary: "People do rain dances when they are hoping very hard for rain. And hoping helps."
[Simon walked down the stairs, looking back at me with his wise smile and flashing eyes. He's tempted to believe in magic. But he also knows SO much about how the world works.]
August 7, 2003 "Finally Some Real Progress"On Tuesday, we saw the beginnings of an encouraging trend. Simon's platelet count was up to 13,000. So, the steroids seem to be working. Today, it was a huge 34,000. And this seems to be happening "on its own". We are so relieved!!!!!!!
Markus and I had a lengthy meeting on Tuesday with Dr. Richard Lemons to discuss Simon's overall case and make plans for his current and ongoing treatment. Here's the scoop. Simon is having a full work-up this week and next, including CT scan, MIBG scan, bone scan, urine test for HMA/VMA (excreted substances which can indicate tumor activity). The CT was done yesterday, and it revealed no soft-tissue evidence of disease. The bone and MIBG scans will be next week.
To continue to treat Simon's ITP (=immune-mediated thrombocytopeonia purpura=low platelets because his body has an antibody that is destroying them), Simon will receive weekly IVIG (immune globulin, which binds to the macrophages on the spleen and makes it not gobble up platelets mistakenly tagged by antibodies) plus weekly vincristine (a chemo agent that can suppress the immune system in a way that helps get over this screwy antibody behavior).
Simon's last daily steroid dose will be tomorrow, and we'll taper off to every other day after that. We're looking forward to getting him off the steroids altogether. Boy, is he eating like a very hungry caterpillar! He is a non-stop eater of noodles, hamburgers, chicken, more noodles, popcorn, toast. He's put on over 4 pounds in the last week! Poor guy, he's got a very bloated, gassy belly. He's fairly tired and moody, which keeps him physically inactive, which must be leading to this bloated belly that's working overtime to digest the foods his huge appetite is driving him to consume! The steroids appear to be doing their job of immuno-suppression, thereby keeping Simon from destroying all his platelets. So, we are accepting of the "side-effects", even if they do make things tougher on all of us, especially Simon.
If you have been doing platelet dances for Simon, please keep it up. That seems to be working, too!
We have sought and received a lot of input from various doctors, including Dr. Mody in Ann Arbor, Dr. Kushner at Memorial Sloan Kettering, Dr. Paul Sondel at the University of Wisconsin, and our friend Jim Olson and his colleagues at Children's Hospital in Seattle. There has been a lot of consensus about using vincristine now, with other options (including cytoxan) if Simon's platelet problem continues. Our main concern has been to impress upon Simon's new doctors in Salt Lake City that Simon needs urgent treatment for neuroblastoma. His problems with ITP have been occupying a lot of worry and attention, but we cannot lose sight of the larger threat of his cancer. We have been very nervous about spending so much time waiting for him to regain a platelet count, rather than pressing forward with additional anti-cancer treatment. At the end of next week, we should have a better sense of his disease status and be able to make the next treatment plans. With Simon's current improvement in his platelet count, we are hopeful that we will be able to consider a number of different treatment options for him.
As usual, in a time when everything is up in the air and Simon is experiencing worrisome symptoms like low platelets, we all experience a lot of anxiety. Once a new plan is in place, we breathe better and start to go about our business with more certainty. We are definitely experiencing that moment of relief right now.
August 4, 2003 "Not Much Change"Simon's most recent visit to the hematology/oncology clinic on Friday, August 1 left us with the knowledge that he has a platelet count of a mere 2,000 (where normal begins at 150,000) and the unsettling situation of no therapy to help him out. The doctors did not want to give him platelets on the grounds that he will likely destroy them very quickly, thus making the normal risk of the transfusion (allergic reaction, long-term immunity to donor platelets, transmittable disease, etc.) not worth it. They are postponing consideration of other therapies, such as vincristine (a chemo agent that can suppress T-cell formation and thereby hold back the immune system in the hopes that his body will be less thorough at mistakenly killing off his platelets). He is still receiving IV steroids at home, and he's starting to plump up a bit and get poochy in the cheeks.
We continue to keep Simon quiet, and his own fatigue helps him stay close to the sofa and the TV, or to his GameBoy, or to his Bionicles (which is is now able to build without referring to instructions). He did do a little running around yesterday when Mary Paul (of our first trip to New York) and two of her friends, Moira and Melissa, stopped on their way across country to spend the night. We had a rousing game of tag at the playground at Simon's new school: Uintah Elementary. Simon ran around deviously, as usual, to evade others. We all had a good run around, including Simon and Miriam's Oma Irmi!
We are getting a huge amount of help from Irmi, who has taken over most of the cooking, cleaning, and watering. She has done a lot of creative building with the kids, and this evening she finally got to see a Pokemon video. Now, perhaps, she can understand a little better what the heck Simon is talking about when he carries on excitedly about his Pokemon. (Mary Paul still can't beat Simon at Pokemon cards, and she continues to believe that the deck is stacked against her...)
Ann and Norm (Grann and Grandad) are scheduled to arrive with our second car on Wednesday for about a week.
Simon's next scheduled check-in is Wednesday. Mary and Markus are meeting with Dr. Lemons on Tuesday to discuss longer range plans for treating Simon's neuroblastoma, including exploring options that might be feasible in spite of the issue with his platelets.
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