WHAT'S HAPPENING Archive April 2002
April 26, 2002 "Cycle Number 6 is Done!"Simon is done with this chemo infusion. It has been very similar to the last one. As always, when we go back to do something that feels familiar, our overall anxiety level is greatly reduced. Mary's mom has been here as part of the care team. She got to spend the day on Wednesday with Simon in the infusion room, and they had a great time. It's nice for all of us to have Simon comfortable at the clinic with people besides Mom and Dad!
Now we hope next week will be a good one, just as it was for the previous cycle. The following week (May 7-10), he will have several scans (MIBG to locate live neuroblastoma cells) and CT (to measure the tumor masses). At that point, we will be making decisions about the next steps: more chemo or surgery, or possibly different chemo or possibly even something else. We anticipate a rise in our anxiety level again at that point, and we will keep you posted on the most important times for you to rev up the Simon "support flow" of thoughts, prayers and whatever else you do to help along his recovery!
For now, keep thinking intense thoughts about tumors shrinking up and melting away.
April 24, 2002 "Clinic"Simon is in the clinic today getting another infusion of cytoxan and topotecan. For the first time Gran is with him and Simon is showing her his favorite toys and games in the pediatric infusion room. Markus just entered an exciting event on this page that happened two weeks ago: Laz Slomovits' visit to Linda's daycare. Check it out below!
April 22, 2002 "The Last Several Days"We've had a lot going on--that's why the updates are a little thin. Simon is doing very well, and he's accomplished quite a bit. His first Broviac (the catheter implanted in his chest that enables poke-free chemo, blood draws, and IV medications/fluids) finally got so loose that it all but fell out. He was squeezed into the surgery schedule on Friday (April 19), and got a new catheter. It exits the same hole as the first one but travels a slightly different path under the skin and over to the vein near his right ventricle. We saw an x-ray of the new line; it's pretty amazing. He's had only mild complaints of soreness at the insertion point (on his neck), and the whole thing looked very good when we changed the dressing on Sunday.
On Saturday, we joined Mary's office and two busloads of UM students, faculty, and staff on a trip to the Detroit Zoo via the Culture Bus. Miriam was intent on seeing the elephants. Simon was most interested in the reptiles. It was a clear, refreshing day, with temperatures in the high 50's. That was a treat after last week's "heat wave" of several days in the 80's!
On Sunday we had the pleasure of guests in our home. Bonnie Marquis, who was our doula for both births and became our good friend, and her husband Brian Hoey (who defended his dissertation on Friday, yay Brian!), helped us host their friends, and our new friends, Claudio and Sara. It felt fun to have company in our home because it's been a while since we did something that felt like a dinner party. It was especially nice to have our guests do all the work!
And today, Monday, was the beginning of Simon's 6th cycle of chemotherapy. He's receiving another round of topotecan/cytoxan. It's 5 days, outpatient. Same drill as April 1-5. We are pleased to see him looking stronger (his muscles are back) and see him gaining both in weight and height. He's now 40 lbs/18 kilos, a good pound heavier than when he was diagnosed in December.
We've recently introduced a number of additional remedies and supplements, and we're all getting used to the routines. We've put more on this topic on our TREATMENT page. We are looking in particular for improved function of Simon's immune system and for support of his body's natural cancer-fighting mechanisms. Dr. Mody has ordered additional blood work so that we can track Simon's immune system through the therapies.
April 14, 2002 "Getting it Together"It slipped by in yesterday's update to mention that Miriam has had a stomach/intestinal bug since Thursday. It has involved copious amounts of extra laundry, since we haven't always gotten the "Just in Case Bucket" under her on time.
On Saturday morning, she calmly wandered into the room where Mary and Simon were sleeping. She quietly climbed into bed, cuddled next to Mary, and had her morning "drinky". We thought she was "done" with her illness, but as soon as she finished, she mysteriously slipped away again. She returned shortly, hoisting something onto the bed. It was the "Just in Case Bucket" from her own bed. Then she climbed in next to Mary and closed her eyes a while. She seemed so grown up and in charge! About 15 minutes later, she began to heave, and we got the bucket at least partially under her in time!
Perhaps it was all the laundry that spurred us into action. We had a pleasant meeting this afternoon at Jane and Sam's with several neighbors and three members of our church community. We laid out plans for getting help with meals, laundry, childcare, cleaning, errands, and shopping. We're still getting it all figured out, but we should have the information posted in the WHAT YOU CAN DO TO HELP section of this site by the end of this week. Stay posted. If you're from church, you can contact Sandra Walls for further information.
April 13, 2002 "The Sun Is Shining"It's Saturday afternoon, and Markus, Simon and Miriam are out soaking up the sun rays in our friendly Family Housing neighborhood. We're on for a potluck picnic with friends for supper.
The kids had the fun of tearing into a package of neat stuff sent by the parents of Mary's friend and former staff member, Kim Yaged. One of a number of gifts we have received from Kim and her family and friends (most of whom we have yet to meet!), this box was fun because it contained a few items from Kim's own childhood.
Simon was instantly enthralled by a collection of 5 plastic turtles. At 3:00 pm in the afternoon, he was finally motivated to change out of his pajamas. He raced up the stairs, dressed himself, and headed out into the sunshine to play with the turtles.
Miriam discovered a beautiful porcelain doll in the box (we assume this was Kim's). She sat the doll on her lap and sang "Ride a horse, ride a horse, all the way to town . . ." Then she cuddled the doll and sang "Rock-a-bye, Baby" in her high, lyrical, on-pitch voice.
[I hesitate to write so specifically about one particular gift that came in the mail, since we have received so many wonderful things from so many people. Just imagine a similar scene occurring for the things that you have sent our way!]
It's now late evening, and the kids are asleep. The potluck was a fun and yummy reminder of how nice it is to live in the international community of Family Housing, especially in potluck season! I am finally able to write on my computer uninterrupted. Recently, Simon has asked frequently to use my Mac to play "How Many Bugs in a Box", a CD-Rom game that we mistakenly checked out of the library in Mac format (he normally uses a vintage PC in our basement). He especially likes to "Color After Number" and "Catch the Bugs". He is amazingly adept with a mouse and has learned to type his own name using a keyboard.
On the medical front, Simon has been feeling good. He received one blood transfusion on Thursday (April 11), but he's otherwise seemed quite well. He's been eating voraciously, running energetically, telling animated stories, and communicating thoughtfully with Miriam. Linda, Simon and Miriam's amazing day care provider, commented on Friday that this was the best week Simon has had in a long time. She's right. It's been a week now since the first topotecan/cytoxan chemo infusion. Simon's blood counts are probably still down-trending, but he's less bothered by the chemo this time around. And his increased energy may well be a sign that the chemo is having an effect on his tumors. We sure are hoping that's what's going on!
We will continue to monitor his blood counts next week, waiting for the day we can stop his Neupogen injections (when his ANC* exceeds 2000 after his nadir, or bottom point). We expect to repeat the same chemo drugs starting April 22 for another 5-day, outpatient week.
It has now been 4 weeks since Simon last spent the night in the hospital. That's a definite improvement in our overall rhythm as a family!
*ANC is the absolute neutrophil count, calculated from white blood cells and a couple of other factors to determine the body's level of immunity. 2000 is well below normal, but considered good enough to receive chemo and/or discontinue the white cell stimulant, Neupogen.
Laz Slomovits, one of the Gemini, visited the children at Linda's daycare today. San, the other member of the Ann Arbor duo, was out of town. When Laz arrived, Linda had already created a little performance space with a row of little chairs waiting for their excited occupants.
The children sang along with Laz and participated eagerly in the activities that he had brought with him. One of the main attractions was a Limber Jack, a wooden doll that whirls around on a little board. Many of the children had a turn with this wonderfully simple toy.
Another of Laz' fun props that engaged the children beautifully was a felt-like apron on which he stuck little Velcro-footed animals. This was the stage for "Five green speckled frogs sat on a speckled log", "Five little ducks went out one day", and "Five little monkeys jumping on the bed." We are grateful to Laz and his brother for continuing to enrich the lives of our children and their friends. Check out the photo gallery of Laz' visit.
April 8, 2002 "Life Feels Normal"Simon finished last week's boring but uneventful 5-day chemo infusion regimen and went on to have a "regular-feeling" weekend. Well, he slept deeply on the sofa all the way through a dinner invitation with Amber and Mark on Friday evening. In fact, when he woke up around 10 pm when we were trying to get him to bed for real, he asked what happened to the party. He was pretty amused to hear he'd slept through it all.
Miriam and Simon have spent many hours chasing each other about the apartment, giggling under blankets on their beds (never mind that they do this perilously perched on the top bunk!), and sharing fun moments like playing the computer game "How Many Bugs in a Box". Several of the recent quotes on SIMON SAYS page come from the last several days.
This round of Neupogen (the white-cell stimulating medicine that Simon receives by subcutaneous injection) is going like clockwork. Miriam knows to avert her gaze as requested, Simon keeps his requests respectful, Mary holds the groovy bandaid of the day at the ready (today it was a Wildlife Tatoo with a shark on it, yesterday Harry Potter glow-in-the-dark), and Markus' steady hands gently pinch a bit of Simon's thigh and press the contents of the tiny syringe (0.3 ml) into our brave (dare I say, mellow?) cancer patient. We have recently learned an additional respect for this relatively new medication. The pale yellow liquid sells for about $100 a pop, making it available only to cancer patients in affluent places like the USA.
As Simon glitters through his daily interactions, learning new things and touching us with his wit and impressive powers of observation, who would guess that his body has such a nasty form of cancer?
April 4, 2002 "One Day to Go on Cycle #5"Simon has checked off four of the five days of this chemo cycle of Topotecan and Cytoxan. Although the medicines are coming in at a lower dose than on his prior treatment plan, this combination of anti-cancer drugs given over a 5-day period has been successful for some cases of "refractory" neuroblastoma (i.e., chemo-resistant as shown by progression of the disease or lack of decrease in the amount of disease). It sounds like a good deal to us, if he can get better with lower toxicity. So far, he doesn't show any signs of wear from his 6-hour days in the outpatient clinic. He plays computer games, watches videos, builds puzzles and LEGO, does craft projects, etc.
We had one minor mishap earlier this week when Simon's IV line became detached while he went to the bathroom. Mary noticed a red spot on his T-shirt and thought, at first, that it was a popsicle stain or something. But then we figured out it was blood dripping out of his line and that the tube attached to the Cytoxan bag was dripping onto the floor. Mary ordered Simon to stand still and not step in the stuff on the floor and then went out to find help. When she got back to the bathroom, Simon calmly stated, "I clamped my line, Mommy." Of course! That was the first thing they taught us to do if the line was open! Good thing Simon was on the ball. It's also comforting to see that his blood came out as a slow drip, rather than a big gush.
We will wait and see how Simon deals with this round of chemo over the next 7-10 days. Expected effects are hair loss, bone marrow suppression (i.e., drops in his blood cell counts), and, most especially, death of tumor cells. Dr. Mody thinks he's much more likely to make it without needing hospitalization between cycles on this chemo. The next cycle is set to begin April 22.
Easter Weekend in OberlinWe had a fun rendezvous in Oberlin over Easter weekend with Mary's brother David and two daughters, Claudia and Eliza (Jocelyn had to stay back to teach school in Indianapolis). The kids dyed Easter eggs, played outdoors, chased each other around in the big house, and tussled over various toys. It was wonderful to have David and the kids make the trip to Oberlin to meet up with us!
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