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WHAT'S HAPPENING Archive April 2004

April 23, 2004 "Status"

We seem to be getting a better handle on pain medications for Simon, and he's had a pretty alert and pretty harmonious day. Simon slept in late after a night was sweaty and pain-ridden. We ended up dosing tylenol for fever symptoms and gave IV dilaudid (hydromorphone, a cousin of morphine) at 3:00 am. Clearly, the oral meds don't hold Simon for a nightime's worth of sleep.

For tonight, we will try using a "patient controlled analgesic" on a pump. This medication will be dilaudid, and it will come in at 70 micrograms per hour continuously. Then, at the push of a button, Simon (or we) can give himself a bolus of an additional 100 mcg. He will be able to do that up to 4 times per hour, if needed. The pump allows us to give him a similar amount of the drug over four hours that we would normally dose in one IV administration (approx. 350 mcg for a 4-6 hr dose). If additional relief is needed, he can get a quick increase by pushing the button.

Pain pumps are considered the most effective way to give pain relief, allowing the patient to be as alert as possible and to have as close to continuous pain contral as possible. We're crossing our fingers for a peaceful night of sleep!

It's a gorgeous, sunny day. Lasagne, courtesy of our neighbor Jenny's house guest Leslie, is on for tonight. Maybe we'll get out for some tag or a walk, too.

Counts today showed good stability, so we aren't too concerned about Simon's fever. We also got results on the urine markers, and they are both quite a bit higher than last time. We must hope that the current chemo can do something to slow the tide.

LABS on 4/23/04
WBC: 2.5
Hematocrit: 27.4
Platelets: 83
ANC: 1.7
LDH from 4/21: 2232
HVA from 4/21: 85.1
VMA from 4/21: 49.9
WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL
Hematocrit (related to red blood cells) normal range: 35.0-45.0%
Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL
ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL
Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L
HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine
VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

April 22, 2004 "Addendum"

Much to our relief, Mary's mom, Ann Craig (a.k.a. Grann) arrived Tuesday evening. Suddenly, things like laundry, loading the dishwasher, and caring for Miriam while she's home sick are now so much easier! We're very grateful for her willingness to hop on Southwest in Cleveland (no matter how many stops in between) and arrive here in Salt Lake City, ready for "Cinderella duty" and, we hope, good times visiting here, too.

In addition, our new friend Lee Ellington is coordinating additional support for us through the network of First Unitarian here in Salt Lake City. This week we have received some delicious meals and some help with shopping. It all really does help! Thank you, thank you!

April 22, 2004 "Radiation is Done; Now Chemo"

Simon finished up his radiation therapy yesterday, and we're all glad it's over with. The biggest problem during the last days of treatment was swelling on Simon's jaw and skull. The swelling is probably a response of the (tumor) cells to the destructiveness of the radiation. We're all eager to believe that the bad cells are dying, but the swelling made Simon's radiation mask uncomfortably tight. Still, he braved it out like a pro and, not insignificantly, he scored a new Transformer toy from us for each day of treatment as a reward.

So far, we have not seen a dramatic improvement in the tumor on his jaw or in the bump on his frontal bone (top of the skull). Both areas are still swollen/enlarged. Both are tender to touch. His pain complaints are variable, probably relative to what pain med he has and when. We are still hopeful that the net result of the radiation will be a reduction in tumor size and pain. We really hope the lump in his mouth goes away so that he feels more comfortable eating and chewing soon.

In addition to the radiation therapy, Simon was seen yesterday in the oncology clinic. He had a physical exam and lab work to be sure he's ready for chemo. Simon's labs came out OK, but the values are significantly down from the high point 10 days ago in San Francisco. Still, they are acceptable for beginning chemo, and we can only speculate about what the changes mean (more cancer in the marrow crowding out healthy cells? reaction to radiation? cell death processes from the radiation?).

LABS on 4/21/04
WBC: 3.3
Hematocrit: 27.5
Platelets: 81
ANC: 2.0
LDH: 2232
HVA (random): pending
VMA (random): pending
WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL
Hematocrit (related to red blood cells) normal range: 35.0-45.0%
Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL
ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL
Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L
HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine
VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

Simon received Day 1 of chemo in the clinic yesterday, and we're doing the remaining 4 days at home. This regimen is easy. The temazolomide is a capsule that he swallows (today's jello is watermelon). We have to watch that he maintains an empty stomach for several hours around this drug to maximize its absorption. An hour after the temazolomide, we give him a one-hour infusion of irinotecan through his central line. And we're done. This regimen is much easier than the topotecan/cytoxan that we did in January and February.

It's wonderful to see Simon feeling good and doing activities like kitty-petting, coloring, Bionicle-building, etc. It's hard to see him sweat in the night and moan if he's feeling pain. So, sometimes we think he'll pull through this harsh time and stabilize enough to go back to school, etc. And sometimes we fear his tumors will keep growing and his pain will increase, leaving us to keep him as comfortable as possible as the disease progresses.

We hear that some patients have stunning response to temazolomide and others have little or no response. Let's all HOPE as loudly as possible that Simon's result is fantastic and that his counts can handle the pound (especially to platelets) that temazolomide is known to cause.

April 18, 2004 "By No Means Back to Normal, But Feeling Better"

Judging by the reduction in the amount of additional pain medication that Simon requires today (about half of yesterday's need), he is doing better. He has had some harmonious times playing with Miriam, doing a puzzle, and now playing cards with his grown-up buddy Jason.

Another sign of Simon's improvement was the fact that he slept all night without needing additional medication. Currently, he's getting a dose of methadone as his long-acting pain relief once every 12 hours. Then we give 2-4 mg of oxycodone if he's still hurting every 2-4 hours. So, last night, methadone alone was sufficient.

And it was an eventful night. Miriam woke up at 3:00 am barking and wheezing with a croupy cough. It took time in a steamy bathroom, followed by time on the back porch in the cool, humid, rainy air to calm her breathing down. She rested for a while on Markus in the "big blue chair" and then returned peacefully to bed. We received advice by phone from the on-call pediatrician, and he said we were handling it fine and not to worry as long as she can sleep. In the morning he called as promised with a prescription of decadron (steroid) for her to take today to help open her airway and make tonight easier for her. With some coaching from her expert brother, she managed to swallow her two little tablets on the first attempt at lunchtime!

[Yes, it's true that a family in cancer-crisis mode can have a kid wake up with a normal-kid nighttime problem. Glad we didn't have a need to rush her into the emergency room.]

Needless to say, we've been somewhat zombie-like, but we're getting through the day. Our new "zip code coordinator" from church, Lee, helped out by picking up Miriam's prescription and planning further local help, like meals, for the coming week. We're also grateful to Lee for watching the kitties last week and for orchestrating repair of our streetlamp while we were all out of town. (We have a small streetlamp on our property, part of a City-resident initiative to add attractive lighting to neighborhoods. Shortly before Simon and I took off for California, the wind knocked the globe off.)

Back to radiation and maybe chemo tomorrow. Hoping for a peaceful night. Time for a really funny video or something!

April 17, 2004 "From Wretched to Resting"

The pain from the tumor arising out of Simon's jaw bone, with a mass extending into his gum at the back of his mouth, is intense. Simon is quite preoccupied with the mass, touching it frequently with his fingers and tongue. He's still restricting himself to liquid foods like soup and cream of wheat because it irritates the growth if he chews.

Yesterday's radiation treatment felt like a disaster, but we did, in the end, accomplish the goal of beginning this treatment in the hope of swift pain relief. Our own inexperience with the radiation process, combined with the rapid sequence of events, left us unprepared for the actual treatment routine. We met with the doctors at 9:00 am at the University of Utah Hospital to discuss the plan and get Simon's prep work done. The doctors were friendly and easy to talk to. Our mindset was more "Where do we sign? Let's get started!!" rather than circumspect and full of astute questions.

A radiation technician made a mask to hold Simon's head still during the treatments. The mask was made of a plastic mesh that softened up in warm water and then was drawn carefully over Simon's face as he lay on his back. Once the material hardened (a few minutes), the mask was done. They did a CT with the mask on and then drew some marks for orienting the radiation machine later. It takes moments to describe the process, but it took many iterations and stops and starts on Simon's part before he was willing to proceed with these strange and scary-feeling activities.

Simon's treatment appointment was at 3:00 pm, so we had time for a trip to the toy store for a reward (he got some Yu-Gi-Oh cards), followed by lunch (well, at least Markus and I ate something), and a visit to Dr. Lemons in the clinic. In clinic we talked briefly about plans for further chemo and decided we will wait until Monday and probably start temazolomide/irinotecan following a phase II study protocol (a study done at Primary Children's).

We also talked about pain management and got a refill on oxycodone, a new script for methadone, and some IV doses of dilaudid (hydromorphone). None of these are mild drugs; all are opioids. In an attempt to give Simon further pain relief and ease his time on the radiation table, we accepted an IV dose of dilaudid (a medication that he seemed to tolerate better during transplant pain than its cousin, morphine). That dose may have been a mistake.

Simon had an all-out panic attack in the radiation therapy room. He was clingy and crying out of control. He feared being left alone in the room, strapped to the table, and immobilized by a face mask (who wouldn't?). He could not accept that Mom and Dad had to leave the room, and there was no means of visual connection, either. The radiation room is a sealed chamber. The patient can be seen on a screen at the control panel outside, but the patient is fully isolated in the treatment room. It was a complete and awful struggle. We suspect the dilaudid added to his agitation, rather than masking his pain and making him more comfortable.

We finally got Simon to agree to lie down and begin the treatment. I held his hand up to the last possible minute and then ran out of the room. We spoke to him over the intercom. But, the techs forgot to leave the room lights on as promised. Simon freaked out and called for us. He was distressed that we didn't respond to his calls during the separation (which lasted less than a minute). When we released him from the mask, he complained of chest pain and said he was almost having a heart attack. (See what I mean about the anxiety attack? Poor, miserable child.)

Then, to our collective surprise and horror, it turned out that was treatment number one of six! We thought we were already done. (See what I mean about being unprepared?) Simon begged to go home. We begged him to stay and get this treatment to help his pain go away. It went on forever. The techs asked us if it might go better for us to leave Simon with them and disappear for a while. Were they on drugs?! Simon has spent the last several weeks getting agitated if he can't locate us constantly--even while watching TV at home. His anxiety spikes when we go upstairs for a minute or two. And they wanted us to disappear while he was strapped down in a room by himself?

We were very close to aborting the mission, but Simon began to bargain. He said he could do 2 or 3 more times, but not 5 more times. To our surprise, Dr. Shrieve (one of the crowd of radiation folks beginning to hover in our vicinity) made a counter-offer of 4 total treatments that day. Deal. When Simon began treatment number 2, we heard his courageous little voice counting "one, two, three..." When he reached twenty, he asked through the intercom, "Mommy, should I keep going?" We cheered him on. The counting was a masterful means of coping and regaining some control. When he completed session number 4, he was clearly proud of his perseverance.

At one point, I asked Dr. Shrieve, who is head of the department, if Simon was breaking all the records for upset, delays, and general hysteria. He smiled knowingly and replied, "Not by a longshot!"

When we left the hospital, 8 hours after our initial appointment, we were battleworn. Markus and I began to remember the other times in Simon's treatment that had been this tough. At first we drew a blank. Then we slowly remembered similarly awful events. Simon's conscious bone marrow aspirate on December 27, 2001 came to mind. It was a rush job to get him enrolled on the high-risk treatment study, and the operating room had no openings for anesthesia until after the evening's FedEx deadline. We were similarly clueless and unable to help Simon manage the situation.

So far, Simon has not noticed significant improvement in the growth in his mouth. He still complains of pain in his right ear, which is presumably under pressure from the expanding mass. His treatment this morning went very well, and he was ready to cooperate with all 7 treatment sessions (each 30 seconds or less, but still requiring lonely isolation). By the end of the morning, he was describing his experience in there alone more as "bored" than scared.

Today he is on methadone, which purportedly makes a patient very sleepy until they adjust to it. Simon is on nap number three right now. We're also giving regular doses of oxycodone because he continues to have pain, especially in the ear. I am trying to get up to speed fast on pain management approaches. This difficult episode really came on fast and with little warning. One Web site that I find helpful is a site called Cancer Pain Management in Children. If you click around the site, you will find information about the types of pain faced by children with cancer and some of the ways to alleviate it.

In between the irritable and groggy parts of the day, we have delighted in seeing some of the "real" Simon shine through. He craves closeness, and Markus and I have taken turns being with him. Miriam accompanied us to the hospital this morning, and she's done admirably at fending off Simon's pouty remarks about not wanting to be around her. She went shopping with Markus and then joined neighbors Jenny and Otto for kite flying.

We hope tomorrow will be a day of decreased pain, tumor shrinkage, better tolerance of the sleep-inducing effects of the pain meds, and returning energy for fun and family time. As the narcotics mount in Simon's system, we are also hoping for free-moving bowels to avoid unnecessary additional discomfort for Simon.

April 15, 2004 "Home Again and, Unfortunately, Hurting"

Simon has had a rapid increase of pain on the right side of his mandible (the jaw bone). It seemed to begin to bother him in earnest on Monday while we were lunching at Ghirardelli Square in San Francisco. Soon, we were noticing a lump on the gum behind his back molar. We moved from tylenol for pain relief to non-stop oxycodone, a short-acting narcotic.

Results of his scans and bone marrow aspirate/biopsy are still being finalized, but the bottom line is that this increasingly painful lesion is a sign of disease progression. Therefore, Simon is now off CEP-701, which, like so many other agents, has been deemed inadequate to keep his disease in check.

Pain relief is our immediate concern, and Simon will be seen on Friday here in Salt Lake City to begin palliative radiation therapy to the site on his jaw and also to the boney mass on the top of his skull. He is eager to begin that process, and he's counting on it to take his pain away. We hope it works.

After pain relief, we hope to find something that can stop the spread of disease. Dr. Matthay's initial suggestion is irinotecan/temazolomide (chemo). We had previously ruled out this regimen for two reasons: 1) it blasts the platelets and 2) Simon has already had a lot of irinotecan and may be resistant to it by now. However, irinotecan is synergistic with radiation, and Dr. Matthay thinks this could be a good combination for the current constellation of Simon's needs. We are glad that his platelet count is stable enough to make this a good option now, too.

By the end of our three days of finding our way around new areas of UCSF, Simon and I were very ready to come home today. Simon has been extremely eager to see Miriam and Markus. We had been apart for 11 days because Markus and Miriam took a trip of their own to Germany and Austria to join in the celebration of Markus' grandmother Vodosek's 90th birthday in Linz, Austria. That's another whole story, and I hope Markus will have a chance to tell you a little about their week-long voyage. Much as Simon and I would have liked to go on the European adventure, I can't tell you how grateful I am that we were not trapsing about Europe when this new pain began. Nightmare!

As a re-united foursome (with Sam and Simon-the-Cat also very glad to have us home), we are collecting ourselves and preparing for whatever lies ahead. Everyone else was sound asleep at 8:30 pm tonight. I, on the other hand, have been getting extra sleep because I've been keeping Simon company at night. The cats are awake, too, and goofing off in the room next to me. Markus and Miriam still have a lot of jet lag to recover from, and Simon is dopey enough to sleep any time. We hope to get him onto a different pain medication tomorrow, and we really hope the process of radiation brings quick and lasting relief.

Please keep our sweet, brave boy in your thoughts and prayers.

April 13, 2004 "Great Counts"

I wanted to share Simon's terrific counts with you (see below). He had labs done yesterday, and for the first time in I don't know how long, he's in the normal range across the board! So, CEP-701 has definitely been good for his bone marrow health on that score.

Simon hung in there today during the torment of no food all morning. His bone marrow aspirate/biopsy under anesthesia was a little after noon. By 1:15 we were headed to the cafe for yummy Italian pasta and bean soup. Simon made quick work of two bowls.

Next, we found what is now our fourth Nuclear Medicine department (Michigan, Sloan Kettering in New York, Salt Lake City, and now here). Simon received his MIGB injection through his broviac. So far, Michigan was the only hospital that insists on peripheral administration of the injection (i.e., injection in the arm instead of through the central line). I guess I don't have to tell you that Simon much prefers the pokeless version of the injection!

I think you all know this already, but screw up your most courageous and audacious hopes for amazing results when we go to talk with Dr. Matthay tomorrow. The best news would be that Simon's cancer is on the retreat and we can continue with CEP-701. Even if it tastes yucky, Simon is scoring some good toys as incentives for taking it.

Or, we will learn that CEP-701 isn't the answer, and we can consider something different, now that Simon's counts are as good as mine or yours!

LABS on 4/12/04
WBC: 7.1
Hematocrit: 35.2
Platelets: 151
ANC: 5.1
LDH: not done
HVA (random): not done
VMA (random): not done
WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL
Hematocrit (related to red blood cells) normal range: 35.0-45.0%
Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL
ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL
Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L
HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine
VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

April 12, 2004 "Back in San Francisco"

It's a whirlwind, that's for sure. Simon and I (Mary) are weathering the winds quite enjoyably back in the Bay Area. At the moment, we are sitting by the refreshing breeze of the open door at Steve, Annette and Rowan's house in Oakland. Their amazing hospitality once again makes us feel at ease in our current medical home-away-from-home. (For those who don't know, Steve is Mary's first cousin on the Williams side. We enjoy reminiscing about our Granny and Gramp and about the many summers the two of us were "traded" for Steve to go to tennis camp in Oberlin and Mary to spend some time with Lucy and Liddy in Baltimore. We also enjoy being adults together, along with Annette, just as Simon and Rowan like being first-grade peers.)

Simon is in the throes of building his 199-piece Makuta, Master of the Shadows. (Now Simon can take his Makuta and combine it with the Toa of Light to create Takanukuta! For those who follow Bionicle, you will know what this means! For the rest of you, you can just shake your heads and wonder, "What will the toy companies come up with next?!") He has earned this treasure for his four weeks of cooperation in taking his CEP-701 medicine. Actually, has final dose is this evening, but we decided he would do his dose, no problem, and he could go ahead and have some daylight hours for putting his new gizmo together. I am his assistant, which is sort of a sous-chef role of finding pieces, tugging on tight-fitting parts, reminding Simon not to use his teeth, etc.

Medically, I have nothing to report except that I have now updated last week's test results (see below) with the HVA and VMA levels--one is up, the other is down a little. Who knows?

The drill in San Francisco is as follows: blood draws today for general status as well as pharmakinetic studies for the CEP-701 trial. On Tuesday, Simon will have a bone marrow aspirate/biopsy. That will be around noon, so the no-food/no-drink morning will be long. After he wakes up from the anesthesia, he'll get an MIBG injection. The MIBG scan is Wednesday morning. On Wednesday afternoon, we meet with Dr. Matthay to figure out if Simon seems to be benefitting from the drug or not. If it seems to be helping (i.e., we see signs of improvement or of stability), he will likely continue. If there is more progression, we'll be looking at other options. At least we now have some platelets to work with, in terms of eligibility for other trials.

Back in Salt Lake City yesterday, we had a lovely Easter egg hunt with friends Glenda, Ty, Zac, and Sophie. After finding a total of 108 real and plastic eggs hidden in the yard, the kids shared their booty with the grown-ups, and we had a brunchy Easter feast. We were really grateful to have our friends do most of the work for this party!

After visits to the zoo on Friday (a no-school day) and the Tracy Aviary on Saturday (for a chaotic Easter egg grab), we spent some time with Bart, Tina, Granger, and Carter. Saturday evening we joined them for a lovely lamb dinner. Also very Easter-y and, again, no work for us! It really feels good to have our friends lightening the load.

April 7, 2004 "Lab Results and Head CT after Week #3 on CEP-701"

With each week on CEP-701, we startle every time Simon mentions pain. Some of it is in places that we know are "hot spots" of his cancer: his right shoulder, his low back/pelvis, dizziness, and discomfort in his eyes. So, we approached today's labs and head CT nervously. After a bad start at the hospital mood-wise (it was one of the only times I can remember Simon defiantly refusing to get on the scan bed--and this from a kid who had anticipated today's visit would be "a snap" when he talked about it in the morning), Simon perked up. He was probably just a tired out kid after school who needed a good snack and a big drink, rather than a ride straight up to the hospital. After a few calories and some water, he was back to feeling pretty good. As always, the clinic staff passed by his room to look at him and exclaim, "Simon, you look terrific today--rosy cheeks, so handsome." And he really does.

Dr. Lemons was right on top of the CT results and came to tell us the good news that Simon's skull disease appears "unchanged". In the world of neuroblastoma, especially at this stage of treatment, no progression is great news. Dr. Lemons was very pleased, and relieved, since he was aware of Simon's increasing mention of pain. We've provisionally decided that the pain is caused by massive apoptosis of neuroblastoma cells, whose TrK has been devastatingly inhibited by CEP-701, and all this cell death is causing Simon some pain in all the right places. Personally, I'm hoping it's one big giant fireworks in there. ("Apoptosis" is natural cell death, the thing all cells are eventually supposed to do when their time is up. CEP-701 is hoped to induce this type of tumor death, rather than the "necrosis" that is expected after chemo.)

Simon's labs today were mostly reassuring, although the LDH continues to rise. So, we're deciding, for now, that it's a non-specific marker that may not directly correlate with neuroblastoma activity. Notably, Simon's platelets continue to rise impressively. Dr. Lemons joked that maybe CEP-701 treats immune thrombocytopenia, too. Realistically, though, we think Simon's just plain putting ITP behind him. Yay!

Simon's labs came out as follows:

LABS on 4/7/04
WBC: 7.7
Hematocrit: 31.0
Platelets: 112
ANC: 5.3
LDH: 1170
HVA (random): 52.5
VMA (random): 24.9
WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL
Hematocrit (related to red blood cells) normal range: 35.0-45.0%
Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL
ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL
Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L
HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine
VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

Clearly, CEP-701 is a vacation for Simon's counts. His platelet count is edging up to the normal range, and everything else is pretty good. His hematocrit remains below normal, but have you checked your own iron/blood levels recently?

For now, we breathe cautious sighs of relief, continue to startle when Simon mentions his pain, and turn our thoughts toward the next little trip to California for a full-scale work-up next week.

Enjoying an evening when our flaky wireless connection is actually working, I'm seated near a calm little fire in the living room fireplace (the perfect antidote to rainy spring weather). And I have updated the SIMON SAYS page for the first time since late 2002! Take a click over there for a few priceless comments he uttered today.

April 1, 2004 "Lab Results after Week #2 on CEP-701"

Simon went into the clinic at Primary Children's in Salt Lake on Tuesday, a day earlier than planned, for a check-up and labs per the CEP-701 study. He has been dealing with cold symptoms (sore throat, irritated eyes, ear pain), and we decided to have him checked over sooner. Fortunately, it was OK to do the labs a day early. Simon also received his monthly dose of inhaled pentamadine (an antibiotic used prophylactically against pneumonia).

Dr. Lemons couldn't see obvious signs of infection in Simon's throat or ears, so we speculated about allergy vs. sinus infection. We tried a dose of benedryl on Monday night, but Simon still woke up with a sore throat at 4:00 am. So, we went to an antibiotic for a 10-day course, hoping to clear up what might be a sinus infection.

Simon's labs came out as follows:

LABS on 3/30/04
WBC: 5.3
Hematocrit: 30.3
Platelets: 97
ANC: 4.4
LDH: 1019
HVA (random): not done
VMA (random): not done
WBC (white blood cells; infection-fighters) normal range: 5.0-14.5 10^3/uL
Hematocrit (related to red blood cells) normal range: 35.0-45.0%
Platelets (blood clotters; indicates risk of internal/external bleeding) normal range: 150-400 10^3/uL
ANC (absolute neutrophil count; measure of immune system) normal range: 1.5-8.0 10^3/uL
Serum LDH (non-specific marker that can be elevated with tumor activity) normal range: 370-840 IU/L
HVA random (urine marker that is elevated with active neuroblastoma) normal range: 0.6-19.4 ug/ml Creatine
VMA random (urine marker that is elevated with active neuroblastoma) normal range: 0.0-8.0 ug/mg Creatine

Simon's counts are very good, including a platelet count of 97,000. That puts him well within the eligibility range for other therapies, should we need to move on. We are concerned about the increase in his serum LDH level, which is back above the normal range. When we discovered Simon's considerable disease progression in January, his LDH was 1138. For most of February and March, it was back in the normal range. Seeing it spike up again makes us wonder if the tumor is more active, despite the CEP-701.

Simon still hates swallowing the medicine, but he gamely began week #3 today. Last Friday, he wrote an article for his classroom newsletter about his trip to San Francisco. Here's what he had to say:

San Francisco
by Simon Vodosek 3/26
I went to
San Francisco
to get medicine.
It is very
yucky. I hate
it. I got
to visit my
cousin. His name
is Rowan. We have lots of fun


Back 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.

    In 2006, entries on this page became sporadic. We named a ski run "Simon's Way". Miriam went to first grade. In December, she reached the point of being older than Simon was when he died.

    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.
    July-December 2005

    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.
    May-June 2005

    Acts of mourning continue as life also moves forward. Mary travels to Denver and meets the bereaved family of Becca Lockler.
    April 2005

    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.
    February and March 2005

    Working through grief; working on life; trying a few new things.
    January 2005

    Approaching "the holidays" without Simon and marking time with the moon.
    December 2004

    Our fourth month without our dear Simon included a busy and rewarding celebration of Simon's legacy with the music duo, Gemini.
    November 2004

    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.
    October 2004

    Life without Simon creeps along.
    September 2004

    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.
    August 2004

    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.
    July 2004

    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.
    June 2004

    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!
    May 2004

    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.
    April 2004

    Chemo abandoned after further progression; begin CEP-701 phase I clinical trial at UCSF
    March 2004

    More chemo (round 2 topotecan/cytoxan)
    February 2004

    Disease progression (widespread in skeleton) discovered during work-up at Memorial Sloan Kettering Cancer Center; begin salvage chemo with topotecan/cytoxan
    January 2004

    Begin accutane (vitamin A derrivative to fight neuroblastoma); consultation with Dr. Kate Matthay at UCSF
    December 2003

    ITP (immune-mediated thrombocytopenia purpura) continues; limited ability to treat cancer
    November 2003
    October 2003

    Irinotecan/vincristine at home
    September 2003

    ITP chaos
    August 2003

    Onset of ITP (immune-mediated thrombocytopenia purpura) AND move to Salt Lake City
    July 2003

    3F8 monoclonal antibody therapy at Memorial Sloan Kettering in New York
    June 2003
    May 2003

    Exploring monoclonal antibody therapy; prepared with topotecan/cytoxan
    April 2003

    Irinotecan/vincristine in the treat then evaluate mode
    March 2003
    February 2003

    Still recovering from MIBG therapy
    January 2003

    Finally starting kindergarten!
    December 2002

    MIBG therapy
    November 2002

    Recovering from transplant
    October 2002

    Stem cell transplant
    September 2002
    August 2002

    July 2002

    Several months of topotecan/cytoxan in the treat, scan, evaluate mode
    June 2002
    May 2002
    April 2002

    Mixed response to therapy--taken off COG A3973 after 4 chemo cycles
    March 2002

    Stem cell harvest (to be purged)
    February 2002

    Diagnosis and starting treatment
    December 2001/January 2002

SIMON'S PLACE | A Web Site For Simon Vodosek