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WHAT'S HAPPENING Archive December 2001/January 2002

January 31, 2002 Home again!

After two pretty uneventful days at the hospital, Simon came home this evening. His cultures did not grow anything bacterial, but he will continue on an IV antibiotic at home as a precaution. Markus and Mary have always been so careful about using antibiotics, especially after Simon's reactions to amoxicillan and pediazole as an infant. Now, we're still vigilant that the doctors watch for allergic reactions, but we're more likely to continue a course of medication "as a precaution" when we see Simon's low white cell count. He is back on the up-trend, and today's count was 0.2 after a couple of days at 0.1. That's still "profoundly neutropenic" as one doctor put it yesterday, leaving Simon unable to fight off infection.

Today marks the end of the 5th week since Simon's cancer diagnosis. In some ways, it's hard to believe it's only been 5 weeks. Simon's already had two chemo cycles and 4 hospitalizations (not counting the two pre-diagnosis overnights in December). For me (Mary), the first 2 weeks were a pretty foggy time, when I wasn't really ready to read up on cancer and cancer treatment. Now, I'm in the middle of various books and learning a ton. (Suggestions from our Web community as far as reading material are always welcome!)

It's hard to believe we've become such "old hands" as a "cancer family" in such a short time! Who would have guessed how good the four of us would get at changing dressings, flushing IV lines, and administering Simon's Neupogen injection ourselves? We finally found a good role for Miriam: musical entertainment. That keeps her busy and makes Simon less worried that she's watching too closely for his comfort. Markus is Simon's prefered injector, and Mary holds the bandaid (currently Scooby Doo) at the ready!

We all continue to feel tremendous support from family, friends, church members, neighbors, colleagues, and our growing Web community. We thank all of you for your varied efforts to keep us going and brighten our days. It is truly an honor to experience so much caring, thougtfulness, and compassion!

We hope to have a quiet 3 days before Simon returns to the hospital on Monday for the stem cell harvest in preparation for the stem cell transplant in the spring/early summer.

January 29, 2002 (Evening)

Well, now we're back in the hospital. During his nap this afternoon, Simon had a fever (101.3F) and irritability spike. We called the on-call pediatric hematology/oncology doctor and headed to the Emergency Room for evaluation. Since Simon is neutropenic (= can't fight infection due to low white blood cell count), he has to stay on IV antibiotics until they figure out if he's got a bacterial infection. They do this by culturing his blood and urine. Since he's had a cold for a while, we're all thinking this one is actually just a cold causing a low-grade fever. But we need to be sure an infection doesn't take off unchecked.

Everything else looks good: chest X-ray and lung sounds are clear; no sign of infection in ears and throat. Maybe we'll get to go home soon!

January 29, 2002

Simon is still at home! He's still snuffely and coughing from his cold, but he hasn't spiked a fever, so it appears he's dealing OK with a virus. Meanwhile, we went to the Cancer Center on Monday for his biweekly blood draw. His white blood cell count is down to 0.3 (or 300). This means the chemo drugs are doing their job of stopping cell growth (both blood cells AND cancer cells--at least that's the very big hope). But it also means Simon's immunity is so depressed that he can't fight off bacterial infections on his own right now. So, he's staying relatively close to home and keeping his circle of contacts pretty limited. That didn't stop him from fun times outside yesterday in the unseasonably warm weather with Andre and other buddies.

Simon also had a play date at his friend Marina's Monday morning before going to the Cancer Center. While at the Cancer Center, he took Dr. Mody up on his promise to show Simon his lab. We saw "washing machines" and "mixing machines" and lab benches and shelves full of chemicals. It actually looked quite a bit like Grandad's chemistry lab. We hope to get a chance to see Simon's own blood under a microscope at some point, too.

To keep things lively, Miriam has been dealing with a tummy bug since the wee hours of Monday morning. Otherwise happy, hungry and vivacious, she spent Monday upchucking everything she ate (including breastmilk) with just as much vigor. She seems to have settled overnight, and is off today to her music class and an afternoon at Linda's.

January 26, 2002

Simon wanted to be sure I (Mary) told you all about a little thing that happened this morning at the breakfast table. I had drawn up 3 mls of Zantac (an antacid) last night, but he decided not to take it. I brought it down to give him after breakfast. Toward the end of the meal, he casually picked up the syringe, apparently unaware that it was "loaded". He pointed it in the air and shot the stuff right onto the ceiling!!! At first Markus and I were a bit annoyed, but then we all realized how funny it was, and we laughed pretty hard. Amazingly, Markus was tall enough to wipe the sticky, clear liquid off the ceiling without even needing a ladder!

Still high over being home at last, Simon had an energetic day. He played hard with toys and opened more mail. At 11:00 am we were joined by Andre, Lindsay, Maya and Dörte for a delightful play called "Rainbow Crow" by Wild Swan Theater. It's a sparkling, warm day, and our outing was full of joy and wild running around the theater lobby after the show. Wild Swan actors and musicians always come out in costume to greet the audience after the play, and we enjoyed talking with them and admiring their wonderful costumes.

Simon continues to have a cold, and his temperature may be climbing up a bit, but so far, he hasn't reached his post-chemo nadir (low point). Last cycle we had three nights at home before he had to return to the hospital for antibiotics during his low blood-cell-count period (chemotherapy attacks cancer cells, but also other fast-growing cells, including the white blood cells that enable us to fight off infection, cells that line the entire digestive tract, and hair). Simon is again receiving a daily injection of neupogen to stimulate his white blood cells, and although he really didn't want to do it last night, he still got up his courage and let us give him the shot. We've been advised that he may need hospitalization between cycles every time, so we will wait and see if he needs to go back in. Meanwhile, he's out enjoying the sunny day!

January 22-25, 2002 Chemo Cycle #2

It took until 2am on Tuesday the 22nd for all systems to be in place for Simon's second chemo cycle to get going (he had to be well enough hydrated to have very dilute urine so that his medicines would not be too destructive to his bladder). Tuesday and Wednesday brought bouts of pretty intense upchucking, but he still managed to find a laugh when watching the hospital's collection of Disney Pooh videos.

San and Laz (Gemini) paid Simon another visit on Wednesday afternoon. But even a big treat like that couldn't quite get Simon over the yuckies, and San and Laz had to leave after a couple of numbers to give Simon the privacy he needed to get over his nausea. They were, of course, gracious about the situation and promised to come back. In fact, Laz showed up the very next day with a collection of their CDs for Simon to use on his new CD/Walkman. (If you are unfamiliar with Gemini, pop over to their site and go to the page with recordings. Simon especially likes the demo sample from the "Feast of Song" CD.)

By Thursday, however, Simon's general response to his second 72-hour course of chemotherapy (same drugs this time as last), was clearly stronger. No diarrhea this time! Around 5:00 pm, he suddenly said, "I want Wendy's!" Soon, we negotiated with Simon's nurse to have Stan, our charming floor host, go down to Wendy's to get Simon his supper. (See SIMON SAYS for more on this story!) When we got back from the playroom to have Simon's supper, his room was full of three men replacing all the electric outlets. Simon wasn't too bothered by all the activity, but he made it very clear that they were not to touch his fries!

Despite a sneezy, stuffy headcold, Simon was discharged late morning on Friday. Yay! He was pretty happy to go home, and he spent the afternoon/evening playing with his buddy Andre and ripping open his copious mail.

Monday, January 21, 2002

If you took a look at photos, you'll see we had some fun over the weekend. Mary and Simon had a super fun time sledding with Marina, Nathan and Kathy on Saturday morning. Then we went to a birthday party on Saturday afternoon. We finally made it back to church on Sunday (Simon hadn't been with his church class since November 4). He was interested in telling his peers about his head (no hair because he takes strong medicine for his sickness), his broviac (central line in his chest), and, most of all, his neupogen shots, which Mom and Dad have to give him for about 10 days after each chemo cycle to stimulate white blood cell growth. Shy at first, he ended the discussion with a lusty call for questions. He seemed a little disappointed when his classmates were ready to move on to duck, duck, goose.

Sunday evening, Ann and Norm Craig came from Oberlin. They joined us for a fun dinner with friends Melissa, Akram, Mekarem, and Khalil in their new house.

This morning, Simon went back to UM's Cancer Center to have his blood checked and to get general clearance for the next round of chemotherapy. He also had a hearing test, which will help monitor adverse effects to his ears of the drug cysplatin, scheduled for the 3rd chemo cycle. Dr. Mody told us that Simon had exceeded expectations with his quick recovery after the first cycle of chemo. He said that it's likely that Simon's bone marrow is not terribly affected by the cancer at this point, given how quickly his blood counts returned to normal. That was good news to hear! Simon checked in on the 7th floor of Mott Children's Hosptial around 2:00 pm, but he hadn't been started on chemo yet when Mary left at 7:00 pm. Hospital time can be pretty slow... So, Simon had a bunch of fun in the playroom and seemed to take being "chained" to his "IV tree" again in stride. If you want a little more detail on Simon's treatment, it's outlined on the TREATMENT page of this site.

Thursday, January 17, 2002

Another good day! Tons of mail (many thanks)! We had a good time with face paint after dinner (courtesy of the Hoetkers). Gearing up for chemo cycle number 2 on Monday. Mary and Markus have actually been able to work this week. Well, at least work some of the time. We've still got a lot on our minds.

Wednesday, January 16, 2002

Simon has had a normal couple of days hanging out at home and going to day care. This evening we all had a good time at Maya's, Mike's and Dörte's house.

Monday, January 14, 2002

After getting his blood drawn at the cancer clinic this morning, Simon went to daycare like in pre-12-26 days. At the clinic Mary and Markus learned more about the stem cell transplant which is scheduled to happen some time in April or May.

Sunday, January 13, 2002

Do you know any kids who pop out of bed and say, totally coherently, the very last thing they thought of before falling asleep the night before? Well, today Simon said, "Did you remember to talk [with dad] about going to the zoo?

So, around noon today, Simon, Miriam, Markus, Gran, and I (Mary), arrived at the Toledo Zoo. We enjoyed a glittering, mild winter day, walking among the different animal houses. We started at the wolves and polar bears. Next the bald eagles [Simon has always loved birds, including eagles, and he will soon be pretty bald, too!]. We had a picnic lunch of Simon's planning (peanut butter and honey, cheese sandwiches, apples), followed by a big bag of blue cotton candy.

Toward the end of the visit, Simon praised his own good ideas: "It was a good idea to come to the zoo today and to get cotton candy! Do you know how I can tell? Everyone keeps asking me for more cotton candy!"

Simon is scheduled for a blood draw on Monday morning, which should confirm his continued strong blood counts. We think he's spending the day at Linda's with his daycare buddies!

Saturday, January 12, 2002

We all went to see the Artrain in Ann Arbor. Artrain is a traveling art museum with 5 rail cars. The current exhibition features the NASA art collection and a ceramic artist. Watching the artist shape a vase out of clay Simon said: "I wish I could do that!". With us were Gran, Andre and his mom Lindsay Gross, and Grace, Ben and their parents Jerry Davis and Christie Brown.

Simon's hair loss has become quite dramatic. He has lost about half of his hair now and likes to demonstrate the inevitable by grabbing a handful of hair and pulling it out. Miriam tried to do the same with her hair and was disappointed: "It don't work!"

Friday, January 11, 2002

Simon has been laughing a lot and had lunch with Linda (Simon's day care mommy) and her gang.

Thursday, January 10, 2002

Simon had his second MIGB scan this morning. He is now home and recuperating from the stresses of the last 10 days. He played with his favorite babysitter Agustina and his friend Preston.

Wednesday, January 9, 2002

Simon is scheduled to return home from the hospital later today. He has been in-patient since Saturday to manage a fever/infection with IV antibiotics. His first cycle of chemotherapy was Dec. 29-Jan. 1, so he is currently in a phase of low immunity.

He had his first MIBG scan today, which is being done to establish a baseline for the condition and location of his tumors. Subsequent scans will tell us more about the affect of the chemotherapy on shrinking the tumors.

He has done well with his first blood and platelet transfusions. We're hoping he'll spend some restful days at home over the next 10 or so days before heading back to the hospital for chemo cycle #2 (scheduled for Jan. 21). Today we noticed for the first time that Simon's hair is falling out.


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