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WHAT'S HAPPENING Archive July 2003July 30, 2003 "Working on It"Monday's platelet count was 28,000. Simon's other counts are looking very robust for him (an ANC of 4.9!). Today's count is 7,000. He is receiving another dose of WinRho (see July 27 update below) and no platelet transfusion. We will check counts again on Friday.He has complained of a stomach ache, heart pain (4:30 am: "My heart hurts."), headaches, being confused in his brain, fatigue. These appear to be side effects attributable to the steroid. His cheeks seem to be puffing up a bit now. We may get our first look at a steroid-puffed Simon soon. We are continuing to struggle with getting Simon's medical records properly transfered and to get back on track with his case management for treatment of neuroblastoma. The platelet problem (ITP) is an absorbing diversion, but we need to get a handle on a bigger plan for Simon soon.
July 27, 2003 "Still Dealing with Low Platelets"We were dismayed, although not surprised, that Simon's platelet count was back down to 2,000 on Friday morning. Whether the missed doses of the steroids were to blame, we can't say. So, on Friday, he received platelets, an IV dose of steroids, and an infusion of WinRho (follow this link for technical drug information provided by Nabi Biopharmaceuticals).We also arranged to have the steroids provided in an IV format for infusion by us at home. Simon's aversion to taking medicines by mouth (other than tylenol, acyclovir, and motrin--all "old friends") is quite severe. Any other people who have experienced the beta-glucan administration at Memorial Sloan Kettering will know how hard that is on the kids. So, we're not in any mood to force a yucky oral medicine on him when there is a viable IV alternative. We got trained at home by a visiting nurse on Saturday morning to mix the steroid (it comes in a little bottle with some powder and solution in separate halves, and you break the seal to allow them to mix--it's very easy). Then we pull the medicine into a syringe of saline solution. Then we push the medicine into Simon's broviac line over about 10 minutes. It is not hassle-free, but it has no bad taste, and Simon stays busy watching a video or playing with his GameBoy (thanks to the Obstfelds--he is obsessed with the thing these days and tends to prefer his Mario cartridge currently). Markus' mom, Irmi, arrived safely on Saturday evening. We're all enjoying having her here. She is doing a wonderful job of admiring our new home, despite its half-moved-in state. She is deeply involved in building Brio train tracks and creating with wooden blocks. It's great to have a playroom that can accommodate all kinds of people playing all kinds of things together. This evening she put the kids to bed, and Markus and I actually went out to a movie. The kids were very reluctant to let us leave them for the first time since our move, but things went fine with their Oma. We spent 90 minutes laughing heartily at the silliness of the movie "Johnny English". On Monday, we'll be back to check Simon's counts. I'm hoping for some improvement. Most of his bruises and petichiae are faded or gone altogether. So, he's looking much better, if a little more piqued. I am expecting that his hemoglobin will be lower because the WinRho recruits red blood cells to do its job, and some of them are lost in the process. We'll see in the morning.
July 24, 2003 "Pioneer Day"As newly arrived "Utahns", we were somewhat surprised to learn that July 24 is a state holiday called "Pioneer Day". We don't know too much about it yet, except that various businesses and hospitals were on reduced schedules or closed altogether and that there were fireworks this evening. If you are curious, have a look at a link from the Salt Lake County Library and another from the Library of Congress.The holiday left us waiting an extra day before Simon's next blood draw and labs. We'll have him checked out on Friday. So far, he is not symptomatic for low platelets. His doctor prescribed a low dose of prednizone (a steroid) to be taken every other day to help suppress his immune system and stop the unfortunate destruction of Simon's own platelets. Our first attempt to give Simon these tiny pills orally on Wednesday failed. Our second attempt to add it to a dose of tylenol was an equally gaggy experience, and Simon was nauseated and had to vomit. Ugh. We have a lot of respect for the lingering effects of nausea, so we didn't push it today. Tomorrow we will explore other options for administering the drug. Simon wants it through his central line. Last night we had an exhilerating time at an outdoor concert by They Might Be Giants. The concert was held in the Red Butte Garden. It was great fun for all of us! We owe our knowledge of this intriguing, intellectual, and highly musical rock band to two families in Ann Arbor. Jerry Davis and Christy Brown, along with Ben and Grace, gave us the CD "No!". In our craziness last year, we let the CD languish unopened for many months. Then, on an outing with Kyle Boyse, Scott Peacor, and Victor and Alita, we had the fun of hearing these songs in their car. We were delighted to realized we, in fact, already owned the CD and raced home to play it. Not only do we love the music, we love thinking of our friends who led us to it! The last note for today is that we are very happy that Markus' mom, Irmgard Vodosek, will be coming to stay with us for two weeks, starting Saturday. We are eager to see her (it's been so long), and we are grateful for the chance to have another set of adult hands around the house!
July 22, 2003 "The Interventions Seem to Be Working, Again"By the end of Monday's marathon at the clinic (see below), Simon's platelets were back up to 138,000. Tuesday morning, he was holding nearly steady at 128,000. (The doctors all tell us a few thousand platelets up or down is unremarkable--platelets are weird, clumpy, and highly sensitive to all kinds of things, even when you haven't had tons of chemo and radiation to damage them.)We'll see how Simon's doing on Wednesday morning. We're hoping this boost lasts longer than the 48 hours of the last one. Dr. Yaish here at Primary Children's has looked at the platelets under the microscope, and he sees 90% small donor platelets and 10% larger platelets that are Simon's own. At dinner tonight at the Spaghetti Factory in a fun urban mall called Trolley Center in Salt Lake City, Mary told Simon she was sorry he was having to deal so much with this silly problem with his platelets. Very maturely, he responded that the problem is "serious", not silly. He's right, of course.
July 21, 2003 "Rollercoaster"Simon's Monday morning platelet count was 9,000. That's way better than 1,000. But, clearly, the boost he got on Saturday was brief. So, he's back at Primary Children's today for outpatient infusions of methoprednizone (plus anzemet to keep his tummy happy), IVIG, and platelets. Both IVIG and platelets are human-derrived products and require tylenol and benedryl to increase Simon's ability to tolerate them (tylenol for fever prevention and benedryl to prevent hives).As we understand it, the steroid suppresses immune function, making Simon's anti-platelet antibody less effective. The IVIG masks the macrofascias on the spleen, making it unable to consume the targeted platelets. Temporarily. The presumed anti-platelet antibody has a half-life, just like any antibody, and should/may eventually go away. We used our day off on Sunday for a chance to get to know our new zoo: Utah's Hogle Zoo. We also went to church for the first time since becoming residents in Salt Lake City. (We'd been to First Unitarian here 3 times previously during visits over the last year.) Summer months are filled with a series of forums in the chapel, rather than worship services. The kids joined new friends for play in the playground, and Markus and Mary listened to writer Mary Dickson discuss the unnerving topic of being "down wind" of nuclear testing. Mary took the chance to stand up and introduce the family to the congregation and to seek some help. We got some good leads.
July 20, 2003 "Excellent Progress"After all Simon's interventions on Friday and Saturday, we are pleased to report a platelet count of 114,000 Sunday morning. It's probably going to fall off again, but we don't have to go to the hospital until Monday. What a big relief!
July 19, 2003 "Platelet Problems Continue"[This update is a quick posting of a message Mary sent to the Neuroblastoma listserv, which is a helpful sounding board for parents and others dealing with neuroblastoma (NB). It has been edited somewhat for jargon, but it may be a little more dense than our usual postings on this site.]Simon's bizzare loss of platelets continues. It has been a scary week of finding mild bloody smears in his bed (from a dribbly nose) and seeing blood in Simon's stool for the first time. His body remains covered with bruises and petichiae (red/purple dots). His feet seem to be bruising from walking. His appetite and energy are so-so, but he has plenty of really good moods before the crankies hit again. He has received platelets every other day. But their effect is extremely short-lived. He has had a "bump" up to 90 (Monday), 61 (Wednesday), and 58 (Friday) after the transfusions (single donor, no HLA-matching is being done to date). But within 10 hours, his count drops back to 1,000. Yes, that's 1 (one) in a range that is normally 150-450. We have managed to get the doctors to talk productively with each other (hallelujah!). Simon's team in Salt Lake City has had him for a whole week now, and they've been working hard to stay on top of his platelet crisis and slowly come up to speed on his overall NB status. Dr. Modak from the MSKCC NB team has corresponded with us and Simon's doctors this week, providing helpful, if not totally encouraging, information. Here's what we know so far. Simon's platelet crash is considered an adverse event, and he is therefore off the 3F8/Beta-glucan study. Unless the platelet issue can be defined as an entirely separate event, he will not be able to return to that protocol. We shall see. Other possible reasons for a platelet drop seem unlikely for various reasons:
Platelet transfusions daily over the weekend. Repeat IVIG (immune globulin that can trick the spleen into not sucking up healthy platelets). 3 days of methoprednizone to suppress the immune system. If that doesn't help, go to a full ITP "cocktail" by adding in vincristine and Winrho (the drug given to babies/pregnant moms when the baby's and mom's blood type are mismatched). A pediatric oncologist friend (not one of Simon's treating physicians) said that a more extreme measure for some kids is removal of the spleen, but he assured me that there are 6-7 treatment options, and we've only given one (IVIG) half a try so far. Wish us luck! Meanwhile, we are enjoying views of the mountains in our new hometown of Salt Lake City but wishing we knew some folks who could watch the kids for a while and help us mow the grass...
July 16, 2003 "Still No Platelets"Simon continues to be unable to hold a platelet count. While it is expected that a cancer patient like Simon will have reduced bone marrow function that leads to a generally low count (say, under 100,000 where normal is 150,000-450,000), it is decidedly not normal for him to drop repeatedly to dangerously low levels despite transfusions. Monday's count was his lowest ever: 1,000. He received a transfusion. Two days later, it was 2,000. I know that sounds like a big number, but it is nothing.It means Simon continues to bruise profusely and develop red dots on his skin. His new hematology/oncology team is headed up by Dr. Richard Lemons at Primary Children's Medical Center in Salt Lake City. Dr. Lemons consulted on Monday with Dr. Mody in Ann Arbor. They are pursuing an explanation for Simon's low platelets by repeating various tests. Simon had bone marrow aspirates and biopsies today. The results are pending. Immediately following the punctures (they actually felt comfortable doing this procedure despite Simon's nearly non-existent platelet count), Simon received another transfusion. During the bone marrow procedure, the staff applied pressure on his shoulder to keep his airway open, leaving Simon with a nasty crop of bruise-like petichiae (little red dots on the skin from leaky capillaries). With such overt signs of poor marrow health, we are increasingly concerned about Simon. We have sent out a question to the listserv of families dealing with neuroblastoma. We have received some helpful stories from other children dealing with similar issues. There do not appear to be clear answers in many cases. And the marrow system seems to regulate itself (or not) sometimes in spite of what medical experts may attempt. It's very frustrating not to know what we can actively do to help Simon regain healthier marrow. Meanwhile, we have to be cautious with him to make sure he doesn't get injuries that cause unstoppable bleeding or bang his head and get internal bleeding in the brain. We can generally tell when he's ready for another transfusion because he wakes up with a bit of blood dribbling from his nose. Simon's test this week for HAMA (that's the immune response he developed to 3F8 antibodies) was again positive. So, further antibody therapy remains indefinitely postponed. In addition to solving Simon's platelet crisis, we will soon need to revisit plans to address his remaining cancer if antibody therapy remains impossible. In spite of his many hours in the hospital, and his grumpy parents who are frustrated by having so little time to get properly moved in, and his nasty bruises, and his post-benedryl crankies (he gets benedryl to prevent hives from the transfusions and it either knocks him out or makes him testy), Simon is managing to be a kid who can still happily build LEGO creations, goof off wildly with his sister, and enjoy watering the browned grass on our lawn while observing the snails in the bushes. We should know something from the bone marrow tests later this week, and perhaps that will give insight into what we can do to get Simon's system back on track. For those who might like to take action in support of Childhood Cancer Awareness, I learned today of a petition to get a commemorative postage stamp. Here's the link: CHILDHOOD CANCER AWARENESS POSTAGE STAMP. Also, if you can spare 90 minutes of your time and be a platelet donor, you will be able to help out people like Simon. Generally, platelets are pooled from several donors to come up with adequate units to transfuse into a patient. This increases the risk of the patient developing immunity to donor platelets. At cancer centers, every effort is made to get platelets from single donors instead. To make a donation, you will be hooked up to an apheresis machine (just as Simon was in February 2002 for his stem cell harvest). One line will lead out of your body, and another will lead back in. Your blood will get spun around in a machine that separates the blood components by weight. Red cells are the heaviest and sink to the bottom. I can't remember where platelets end up (maybe at the top--they're pretty little but sticky). The stem cells were a slice just above the red cells and just under the white, making them a pretty pink grapefruit color. Platelets are a yellowy beige. Once the platelets have been separated out, all the other blood is returned to your body. It takes longer than the average blood donation, but it provides a much safer and more effective product for patients like Simon to receive. As you can tell from his recent experience, he is currently completely dependent on donor platelets to survive. You can donate at your local Red Cross or, if you are in New York, directly at Memorial Sloan Kettering Cancer Center. Even though your donation may not benefit Simon directly here in Salt Lake City, I am certain it will buoy Simon's chances of receiving what he needs here.
July 12, 2003 "We Made it to Salt Lake City!"Whew! We arrived yesterday in Salt Lake City. Simon and Markus had spent Thursday night in the Traverse City hospital so Simon could be transfused right before our trip to minimize the risk of flying with low platelets (the big concern is that pressure changes could cause internal bleeding in the brain). Before the crack of dawn on Friday morning, Norm (Mary's dad) brought Mary and Miriam, collected Simon and Markus, and delivered us all at the Traverse City airport for an 8:00 am flight. The trip went smoothly, and it was a huge thrill to arrive as a family at our new house!The kids are as excited as we are to be making this spacious house into our home. We still have A LOT of work to do in unpacking boxes and deciding what to put where. It's slow going. And it gets very slow when we have hospital visits to take up time during the day. Simon was seen at Primary Children's Hospital in the Hematology/Oncology clinic in Friday afternoon. He had a platelet count of 33. (For those readers who have no context for platelet levels, here's a little reminder. The normal range is 150 to 450 thousand. Simon has been hovering under 10 thousand. At this very low level, he bruises dramatically and gets little red dots called petichiae. Again, the biggest concern is that he might bleed from a wound internally or externally and not have the ability to clot.) We took him back in today to get a platelet count, and it had dropped to 7 thousand. So, he received a transfusion this afternoon. His post-transfusion count was 61. We expect to have more time next week to delve into the possible causes and possible remedies for Simon's platelet problem. We are now in the hands of the pediatric hematology/oncology team here, and we fully expect to receive good care from the doctors and nurses that we are just getting to know. We are glad to be back in close proximity of a full-service children's hospital with a respected hematology/oncology service. The last several weeks have been an unbelievable whirlwind of locations, hospitals, worries, fun times, and travel. It is a relief that we have no pending needs to travel, although Simon's blood will be evaluated on Tuesday for HAMA (human anti-mouse antibody) to see if he's ready for another round of antibodies in New York. Until we know that, though, we'll be staying close to home and working on making it ready for comfortable living.
July 8, 2003 "Getting Help with Platelets"Simon and Mary are near the end of a day/evening at Munson Health Center in Traverse City. Simon has received an infusion called IVIG. It's a gammaglobulin to assist his immune system in regulating itself again. Dr. Mody (and the others involved, including a string of on-call pediatricians in Traverse City that has reached 4 in 4 days!) believe Simon has developed a condition called ITP (immune mediated thrombocytopenia). Simon's immune system seems to be so revved up from the beta-glucan/antibody therapy (May 27-June 6) that his body is targeting his own platelets for destruction. If the IVIG helps regulate his system and enables him to produce and keep a higher platelet count, then we will know that he has ITP.The doctors are saying that this condition should be temporary. Simon is covered with nasty bruises and woke up last night with severe pain in his right thigh. The pediatrician here decided the pain is from a muscle bleed in the thigh. Given Simon's good test results in June, it's very unlikely that the pain is cancer-related. One thing that's making our trips to Traverse City much more pleasant is that we can see Bonnie Marquis and Brian Hoey. Bonnie was our doula for both births, and she was Simon's nanny for several months of his infancy. She and Brian moved here from Ann Arbor several years ago. It's been great to see them again and to receive Bonnie's ministrations of kindness. She brought us dinner today, and she's spent time hanging out in the hospital room. This evening, she spelled Mary for a trip out to local ice cream phenomenon "Moomers". This country road spot is a place to get really rich ice cream where you can see (and smell!) the cows as they graze in their pasture. Simon ordered chocolate, and he's gobbling it up. Markus and Miriam spent the day inner-tubing down the Platt River with other members of the Craig clan. They reported a similarly slow-feeling kind of day--although they were definitely more in the sun! The assembled Craig family celebrated Ann's 70th birthday yesterday evening. She actually reached the milestone in April, and this was our first chance to celebrate with the whole crowd. Over at Crystal Lake, the Williams clan had the same party for Lee (who won't actually turn 70 until August). So, picture this. Tomorrow morning, Simon and Mary will probably join the morning swim group again. Led by David (who developed the habit as a camper and counselor at Camp Pemigewassett), we head down to Lake Michigan for a "polar bear"--a refreshing wake-up dip in the cold water! Simon can't immerse his upper body in water because he still has a broviac line in his chest. But he loves to throw stones at the little waves, and everyone enjoys the swings on the beach before heading back to the big Victorian house for breakfast. David is the kids' favorite giver of underdogs!
July 7, 2003 "A Little Bit of Everything While on 'Vacation'"It's been too long since the last update to give a real sense of all that's been happening. We have a lot going on! We've been leaving the larger Web site community in the dark, although at least the Craig/Williams clan is currently assembled, so that part of the family is up to date.Simon's platelet situation has grown worse. We left New York on July 4 to spend a week in Frankfort, Michigan with the extended family. (Miriam and Markus joined us here from Salt Lake City). Simon had been receiving platelet transfusions every 3-4 days for the past 2.5 weeks. This past weekend, he increased the pace to once a day. So, we are getting to know the Munson Medical Center in Traverse City, a 45-minute drive from our current location. We've had a different pediatrician every day, and our initial visit had to go through the Emergency Room, making Saturday's transfusion a marathon of waiting around. Sunday's went more quickly. Today's count is a whopping 8 (the transfuse point is usually anything under 20, occasionally anything under 10). We expect to go back to Traverse City this afternoon, but we are attempting to be in contact with one of Simon's oncologists (one in Ann Arbor, one in New York--anyone who will call us back when we can actually receive the call on our reception-compromised cell phones or the shared line in our vacation house...). Simon has never needed daily transfusions as an outpatient before. There were a couple of intense periods right after transplant last September, but he was a captive in-patient and easy to transfuse. Now, we're in an inconvenient location, and he suddenly needs daily support. It's a drag. Fortunately, there's a small hospital right here in Frankfort that can run the blood test. We just wish they'd come up with more promising numbers from the tests! In our patches of time between medical management moments, we are enjoying the company of Simon and Miriam's cousins Eliza and Claudia Craig and Margot and Nathan Lautens. Mary's parents (Ann and Norm) and brother David with wife Jocelyn and sister Julie are also here. Plus, all the Williams second-cousins are nearby at Crystal Lake. If you've been reading Simon's Message Board, you'll recognize names like Curt, Lawrie, Madi and Lexi; Lucy, (Ben, who's in Maryland), Grace, and Logan; Liddy, (Martin, in another part of Maryland), Justin, and Jacob; Annette, Steve, and Rowan; and Lee. It's great to see everyone! It's a lot of people! As for Simon's test results at Memorial Sloan Kettering, we finally got all the results from his first round of antibody therapy. Simon's bone marrow is clear on all sites tested, aspirate and biopsy. And his MIBG scan was less intense than in May. All of this bodes well for continuing antibody therapy. However, we have to wait for the HAMA response to clear (next test is July 15) so that he can continue. Also, if this platelet situation is a result of the therapy, we will have to figure out if he can still have antibodies safely. We're still planning to head as a foursome to Salt Lake City on Friday. Our box-strewn new home awaits its occupants. It's been nice to be reunited with our car this week (Ann and Norm will drive it out to Utah in August). It will be REALLY nice (especially for Simon and Mary) to be reunited with our own BEDS (which we last slept in on June 17).
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.
2006
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
ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
Irinotecan/vincristine at home
ITP chaos
Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
Irinotecan/vincristine in the treat then evaluate mode
Still recovering from MIBG therapy
Finally starting kindergarten!
MIBG therapy
Recovering from transplant
Stem cell transplant
Surgery
Several months of topotecan/cytoxan in the treat, scan, evaluate mode
Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
Stem cell harvest (to be purged)
Diagnosis and starting treatment
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