WHAT'S HAPPENING Archive July 2004
July 31, 2004 "Hanging On Very Peacefully"Simon's hospice nurse just can't get over his endurance. She stopped by this morning. His respirations are 24 per minute. His heart rate is 96. The noisy, moist breathing is over with, and Simon is breathing very evenly and calmly. Although he has not verbally communicated since Wednesday morning, we are trying to read his sighs and eye blinks for signs of what he wants us to do. Markus and I each spent several hours yesterday holding him in our arms.
The appearance of his head changes all the time, showing us through bruising and swelling that the tumors are growing as vigorously as Simon's heart continues to beat. We do our best to ease his eyes with ointment, drops, warm wash cloths, eye bags. We use damp gauze on a finger tip to moisten his mouth. We've managed to soothe the overly dry lips and tongue that appeared in the night from Wednesday to Thursday. He continues to receive ativan and dilaudid to help him stay calm and pain-free.
For a change of pace today, we're about to take Simon down to the TV room to watch Digimon or Pokemon, which were his most recent favorites. He is very frail, so we hope that we can manage moving him without causing discomfort.
All the prayers and love coming our way sustain us. I know now that Simon's passing and the love you all share for him says as much about all of YOU as it does about HIM. He has a beautiful way of helping us see ourselves clearly and purely. We can all rejoice in the love he inspires.
Happy Birthday, Julie!
July 29, 2004 "The End is Near"Simon never went downstairs on Wednesday, and he has declined rapidly over the past two days. I won't take time to write in detail now. His breathing is labored and rattly. He hasn't spoken since Wednesday morning. We hope we are figuring out how to make him comfortable, but we miss his reliable guidance.
We hope to ease the soreness we can see in his vacant, tired eyes. We hope that we are easing his pain well enough by guessing when to hit his bolus button. We added the drug ativan after Simon had a kind of seizure Wednesday morning. The drug works well to calm him down, and he's been more peaceful since.
Our hospice nurse believes he is comfortable. She was here twice yesterday and will be by again this morning. Miriam and Grann (who arrived Tuesday night) are providing good support. At one tearful, family cuddle yesterday, Miriam very thoughtfully handed fresh tissues to Mary and Markus to wipe our eyes.
At bedtime on Tuesday, I asked Simon if he'd like to read stories in our bed with Miriam. He nodded strongly, which was a big communication for him that evening. Although he couldn't nod again yesterday, we made sure to read stories together again because we know he loves that. Miriam sang beautifully to him before she went to bed.
I sang him many rounds of the simple song we sing at the close of our intergenerational service:
Go now in peace.
May the spirit of love surround you
Everywhere, everywhere you may go.
July 25, 2004 "For the Update Hungry..."The slow pace of summer continues. After a week of just the four of us, we have a visitor now. Sally Olson (a frequent contributor to Simon's MESSAGE BOARD and Mary's best friend from growing up in Oberlin). Sally has been playing a lot with Miriam, and they've done amazing applications of nail polish to fingers and toes!
Simon had a burst of energy yesterday, and he did a fair amount of walking around the house. He went on a shopping trip to Toys R Us to pick out a few things he might enjoy having. Then, for the second Saturday in a row, Simon requested to go to the Old Spaghetti Factory for dinner. The five of us had a fun time at the restaurant, and both children ordered their meals in strong and clear voices, despite the noise of the crowded place. Our only disappointment was that the caramel apple store was closed when we finished dinner. (Those who know Trolley Square know how tempting the Rocky Mountain Candy place is for treats, but their hours of service can drive you nuts!)
Simon had blood counts done on Thursday in our new routine of having a homecare (hospice*) nurse stop by Mondays and Thursdays to check in on Simon. Everything is quite robust, with his white cell count over 7.0, his ANC at 5.0 (both very normal), his hematocrit at 27 (anemic, but not transfusion-worthy), and platelets at 21. We'd all be a little happier with a higher platelet count, but he shows no signs of active bleeding or bruising. Plus, his activity level is very low, so he doesn't have the same risk of falling and causing a bleed as he did when he was an active kid with low platelets. Therefore, we are sitting tight at home and not planning to intervene with transfusions.
His pain medicine continues to be effective, and he takes charge of when he needs to push for more relief. We've had some success this week in locating palatable laxative aids (a senna liquid laxative for children with a rootbeer flavor seems to be our best bet so far). The narcotics so necessary for pain relief slow the bowels way down, causing the nasty and painful side effects of constipation and nausea. So, we have to be aggressive with Simon to give him the help he needs.
Sadly, Simon may be losing sight in his right eye now. He has begun to look into a mirror to help him see the changes in his eyes and clean out the bits of discharge that collect at the edges. He uses a Stye ointment and warm washcloths to moisten his eyes and give some relief. He has been very brave about the changes in his eyes. For those of us looking, it is a cruel thing to see, and we appreciate Simon's brave decorum and all his efforts to make polite requests for assistance.
We note that the 3rd annual conference for neuroblastoma families just took place in Chicago. We had hoped to attend as a foursome this year, taking advantage of the chance to meet doctors and families with experience in dealing with this harsh disease. The timing did not work out for us to be there this year. We were there in spirit with the many other families, and we hoped they gained the knowledge and support they needed. We are especially thinking of the angel parents who joined the conference this year.
*Another note on our use of the term "hospice". Simon is not officially on hospice status because our team feels he has the best treatment options (insurance-wise) without labeling him "hospice". However, we are attempting to create the sense of support for him and the rest of us that a hospice can provide. I know many people think the term "hospice" somehow equates to a sad, "end of the line" kind of situation. We don't see it that way. We are trying to provide Simon with the best care possible, and hospice has a comforting and experienced role to play. If you're interested in this topic, I can highly recommend a book written by hospice nurses on their observations of the dying (mostly all adults, but still interesting). It is called "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying" by Maggie Callanan and Patricia Kelley. Here's a link to the book on Amazon.
July 20, 2004 "More of the Same"Our life continues in much the same way, so there isn't too much to report.
Simon continues to respond well to an increase in the level of pain medicine he receives, and we increased it again yesterday. We believe we are in the right ballpark with the dose because he has times when he is fairly alert, and he has not needed much additional medicine from pushing the button to deliver a bolus amount. For the curious, his current levels are 340 mcg per hour continuous with a bolus of 240 mcg available every 8 minutes.
Other medications remain the same, with the introduction of steroids on Friday last week. Those who read SIMON SAYS may have picked up on a mention of Simon's radiation consultation on Friday. From a CT scan to plan treatment, we learned that he has numerous sites of active disease in his skull. We abandoned plans for spot radiation to give him pain relief, especially in the area of his eyes. We felt that radiation side effects, especially damage to the mucous membranes in the eyes, were best avoided altogether. The only sure way to avoid side effects is not to do the treatment at all!
We are glad to say that the steroids seem to be helping Simon in many ways. He seems to be more comfortable in his head, with the steroids reducing inflammation. They also increase his appetite. And his nausea has been under control since Thursday of last week. So, we are panting a little as we fill his requests for another bowl of cereal, or a dish of angel hair pasta with tomato sauce and shakin' cheese, or watermelon, or raspberries. We are so lucky to have daily errand runners. Thanks to Lee Ellington, our care coordinator, and our neighbor Theresa Ostler, we have a cheery crew of neighbors and church friends checking in to see what we need. They do library runs and help us keep the pantry stocked with Simon's changing appetite. For more information on our helper network, please see WHAT YOU CAN DO TO HELP.
Simon has done his part to keep the household going, too. He continues to run short errands to the grocery store and to the video store. Although it's a struggle for him, and he sometimes needs to be carried, he is stalwart in his drive to procure the things he desires. He is a very determined person!
Tomorrow morning we look forward to a brief show in our own home by Marcus, the magician/clown/juggler who entertained us so wonderfully at Simon's party on July 1st.
July 15, 2004 "Quiet Summer Days"Things are feeling slow and summery at our house. We hunker down during the days to keep the house cooled. Simon continues to spend most of his waking time in the TV room, alternating naps and video-watching. He often seems to combine the two.
In a bid to boost his energy level, we took him to clinic yesterday to receive transfusions: platelets and red cells. The staff were very considerate, and we all did our best to create a restful environment for Simon during the long afternoon of pumping in blood projects, medications, fluids. By the end of it, Simon had the onset of a bad headache. The staff said it could be caused by the fluid intake. I'm glad I asked them to give conservative amounts, rather than really "juicing him up."
Whether it was from the transfusions or for other reasons, Simon has increased his use of his pain medication, and we have requested a new pump that will deliver it faster as a background dose. He has been pushing the button a lot, and the idea is to increase the background rate so that the push becomes less necessary again.
Activities of late have included a couple more brief outings. Monday night was a not-so-fun trip to the ice cream store (Maggie Moo). It turned out to be a noisy (blenders!) store and then a noisy plaza (someone had music and speakers out for general "enjoyment"). So, we got ice cream treats and split. (Simon got bubble gum ice cream with gummy bears and lolly-dots.)
On Tuesday evening, Simon went shopping for a few grocery items with Markus. He came home ready to watch a movie together, and we all sat down for "Monsters, Inc." Earlier that day, Simon's wonderful teacher, Ms. Eaton, came over to read with him. They breezed through a whole Magic Treehouse story (one about Shakespeare). Simon was quiet, but attentive, and we know the visit meant a lot to him. If you haven't met her yet, you can see a picture of Ms. Eaton in the June 2004 PHOTO GALLERY.
Markus' sister, Christina, left this morning to return to Berlin. She was with us for a week, and she had a lot of quality time with Miriam. The two of them spent HOURS drawing and painting, playing house, playing school, you name it! Miriam will miss her live-in playmate. Christina also did a lot around the kitchen, and she offered a quiet presence around the sensitive Simon.
We are on our own for the next while. We are still getting lots of help from dinner bringers and errand runners. It will probably be a quiet time.
July 11, 2004 "One Year in Salt Lake City"It was a year ago today that we arrived as a family to take up residence in Salt Lake City. For those of you who were following Simon's story then, you might remember the mystifying onset of Simon's platelet problem (ITP). We arrived in Salt Lake City on a Friday, and Simon was seen in the clinic at Primary Children's that same afternoon. If you'd like to read more about the crazy times of last summer, have a look at the WHAT'S HAPPENING Archive for July 2003.
There's not much change to report today. Simon and I are again hanging out in the TV room. Despite the hotter temperature outside, we're able to cool our house comfortably with the locally favored appliance called a swamp cooler.
Simon doesn't have much energy, and he uses it sparingly throughout the day. I am touched and thrilled every time he uses it to give me a little cuddle or a kiss. His favorite activities now are watching videos and being read to. And napping.
Miriam has been getting in good play time with Markus' sister, Christina, who is visiting for a week from Berlin. Christina overlapped for one day with Susanne Hay, the painter. Miriam has been inspired to do a lot of painting with both Susanne and Christina, who is an interior architect and has a strong background in drawing, too.
Simon's blood counts are mellow. His electrolytes seem stabilized. His pain medicine has been good for the past 7 days. Zantac and anzemet, however, are not controlling his stomach problems well. He continues to have tummy pain, vomiting, some clotted blood in the vomit (presumably from an ulcer). We are hoping to find more help, and Dr. Lemons is talking with a GI (gastro-intestinal) doctor about options. He is getting very skinny.
The tumors in Simon's head continue to grow. We believe they are causing his eye pain. He also notices pain in his left mandible, and today he pointed out a bump that protrudes both in and out of the jaw bone. He complains of pain in his neck/spine as well.
If he weren't so peacefully resting most of the time, I would feel horrified about these visibly growing masses. Instead, I am grateful that the discomfort they cause is manageable. I wish his eyes could get some relief, too.
In his comments these days, Simon focuses on the practical: getting comfortable, getting a movie in the machine, asking for a food he'd like to try, offering strongly worded suggestions for how the rest of us go about our tasks, requesting his spit-up bucket. He has not spoken of his spiritual or emotional state recently.
It's now nearly midnight, and the kids are asleep. Simon perked up around 7:30 and got interested in a trip to Blockbuster. His mission: go to Blockbuster and find a movie we can all watch together and get some raspberries to put on ice cream. So, the nuclear four of us had an outing together. Other visitors who have recently accompanied Simon on one of his spontaneous shopping trips will appreciate what an interesting time this can be. Simon was clearly tired and hurting in his eye at the video store, but he picked out his movies. On the way home, he decided to go into the grocery store to collect raspberries and look around for other foods of interest.
In the car on the way home, Simon got pretty silly. At one point he made a joke and laughed. I had to ask him if that was indeed a laugh, so you can imagine how weakened his expressiveness has become. We talked more about laughing and remembered Marcus, the clown from his party. Simon recalled several funny things Marcus did. Then he admitted that he'd been laughing so hard it hurt in his tummy! He also said it would be fun to see if we can get Marcus the clown to come give him another show at the house.
We go to bed feeling that we have had enjoyable and meaningful time together this evening. Tonight's movie, by the way, was "Dinosaur". It seems that the task now at hand, in addition to adequate pain and symptom relief, is to enable these wonderful moments to happen and to live them fully.
July 7, 2004 "These Days"Simon and I are sitting in the dimly lit haven of our TV room. The movie "Pokemon 4Ever" is playing, although Simon appears to be dozing at the moment. He has been enjoying the movies he picked out last week at Blockbuster, plus a bunch of new ones from the Salt Lake City Library. The topics range from animal movies with Henry (the computer-animated lizard) and Spin (the Dudley-Moore voiced National Geographic "Very Wild Animal" series) to many stories from Pokemon and Sailor Moon (both Japanese anime). Simon has low energy much of the day, but recently he's been waking up for a few hours of activity in the evening. Ah, I just heard a little snore, even though his eyes are part way open. He looks very peaceful.
Simon's pain medicine is at a stable-feeling level, after a bit of back and forth over the weekend. He's settled in on the "medium" pump, which arrived on Monday. Last night he told me the dose is "perfect". On the tummy front, he's still having pain, nausea and vomiting. As they say here in Utah, "Darn it!" The tummy meds don't seem to be adequate, so we will revise the dosing schedule a bit to see if that improves things. He still wants to handle all his eating on his own, without taking any IV nutrition. So, he keeps trying to find foods that will stay down. Sometimes he seems pretty frustrated about it.
Grann and Grandad flew home together today. Mary's mom had been here since June 14, so it was high time for her to see her husband and head home to her garden and other parts of her own life. Both of them provided boundless and varied assistance while they were here.
One house guest remains at the moment. Since Sunday night, we have had an artist in our midst. Susanne Hay, a friend from Markus' youth in Stuttgart, is an accomplished painter now residing in Paris. We have long admired her work, and we invited her to come for a week to do a portrait of Simon for us. Simon is only partly willing to participate in this project, and we can't blame him for feeling annoyed with having this unfamiliar person look at him so closely. We'll keep you posted on how it turns out. Susanne, the mother of three, has a lot of understanding for Simon and his lack of enthusiasm.
Simon's blood counts are pretty stable. His electrolytes get a little tweaking through various fluid infusions at night. He has increasing discomfort in his head, especially behind the eyes. It is so worrisome to know that a tumor is growing inside there. We see it protruding out the top of his head, and we know it is doing the same thing below the skull bone. Dr. Lemons has offered radiation therapy as a possible way of halting the growth and providing relief. We do not know, however, if Simon has the stamina and the will for that intervention.
It is a comfort to us to know that so many folks are out there, keeping Simon's journey and precious spirit in their hearts. In fact, I know some of you have wondered how much traffic this Web site sees. I took a look at statistics for the last three months. The main page was accessed 4930 times in June, with the WHAT'S HAPPENING page getting 3474 hits. The MESSAGE BOARD had 1537 visitors, and the revived SIMON SAYS page drew 707 hits. All of those are up about 50% over the previous month.
We're still receiving fun photo greetings in various forms. Keep 'em coming! Take a look at the ones I've managed to post so far on the STORIES FOR SIMON page. (Is there anyone out there who can do basic photo editing and write a little html? You might be able to help create the pages with Simon's greetings. Email Mary to let us know.)
July 3, 2004 "Lots of Medication; Very Tired"In an effort to keep Simon as free of pain as possible, we have agreed to an increase in the rate of his dilaudid pump. It was a big increase, taking his background rate to 210 mcg per hour (was 140 mcg per hour) and 310 mcg per bolus (was 170 mcg). It is expected that for a while, he will be covered by the background dose and not need to push a bolus for quick additional relief. But once he does have "breakthrough pain", the bolus should be adequate to cover the pain.
We hooked up the new pump at bedtime last night, and Simon had a very quiet, sleepy night. He has remained extremely sleepy during the day, and he's barely able to acknowledge us. So, either we need to make a reduction in the med amount, or we need to wait it out for about 24 hours to see if he adjusts. We've been told that an increase in the dose can "snow" the patient for a day or two, and then things go better. Poor Simon does not like to have a lot of drugs in his system. It is hard to find the right balance.
We also expect that Simon is worn out after his big party on Thursday afternoon. Boy, did he get energetic that day. In the evening, he hatched a plan to rent a Pokemon video at Blockbuster. And he wanted to go there and pick it out on his own. He walked all over the store. Then, he wanted to get ice cream and sprinkles to continue the theme of the party while watching the movie with his cousins, Margot and Nathan. So, he walked around a good part of the large grocery store, too. No wonder he's in crash mode right now.
After some clotted blood appeared in Simon's mucous, and later a little vomit, yesterday morning, Simon was able to be convinced to receive IV zantac (for stomach acid) and zofran (for nausea). He had been terribly reluctant to receive these medicines through his line, and he wasn't able to explain exactly why. Perhaps we have conquered that fear. In any case, his stomach appears to be better today, with only a tinge of dark blood in mucous today. Our hospice* nurse, who examined Simon, and our doctor believe Simon has an ulcer that is causing pain and bleeding in his stomach. Ouch. We hope that discomfort is eased soon.
By the way, both zantac and zofran are drugs developed by Glaxo-Smith-Kline, which is Simon's Aunt Julie's company. It was unusually convenient to have Julie here to answer drug questions. For example our bottle of zofran liquid suspension (oral) was dispensed in September 2002. The expiration date was covered by a secondary pharmacy label. So, we asked Julie, and she said it should have a 2-year shelf life. As for zantac, Julie helped us convince Simon that it would be safe to try by telling him the Glaxo joke about zantac. When it was approved by the FDA, it was deemed a very safe medication. In fact, so the story goes, the only way you could get hurt by zantac is if you get hit by a truck carrying zantac to the pharmacy.
Julie, Margot and Nathan left for home this morning. While they were here, they very patiently waited for the brief moments when Simon wanted to play. They took Miriam and Oma on an expedition to Antelope Island, a site within the Great Salt Lake. And Julie ran countless errands and bestowed meaningful and useful gifts on us, a practice also long-kept by Grann. Oma and Opa have been big helpers, too, and they were able to steal away for a big outing yesterday with Markus and Miriam to Timpanogos Cave and then to Sundance Resort for a scenic ride up the chair lift.
*I am using the term "hospice" here because we are clearly in a process now of helping Simon die as peacefully as possible, when that time comes. Simon's care management is still in the hands of Dr. Lemons and the team at Primary Children's, though. Our full care team feels Simon's options for good health insurance coverage and care are maximized by keeping him in this arrangement, rather than on official hospice status. For us, it feels like a hospice setting because we are accomplishing his care at home, and he is seen by hospice nurses who come into our house. These are the same nurses that have provided his home health care for a year now. Also the same social worker. So, the transition has been seamless for us. After our meeting with the care team on Wednesday, we feel quite comfortable with the current set-up.
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