March 30, 2002 "The New Plan"In consultation with both Dr. Mody and Dr. Yanik over the past couple of days, we have arrived at a new treatment plan. Simon has been taken off the original study protocol after 4 cycles of chemotherapy. His scans over the past two weeks confirmed that he has had no significant reduction in his tumors and that the tumor on his right lung is definitely neuroblastoma. Despite disappointing and worrying results from the first 3 months of treatment, we are feeling more at ease knowing what's in store for us now.
We have put a sketchy outline of the new treatment plan on the TREATMENT page. We will fill this out as we get deeper into the changed course of action.
We are enjoying a relaxing Easter weekend, welcoming the arrival of spring, and drinking up the rejuvenation of this incredible season of hope and rebirth. Simon is vigorously consuming tofu, tomatoes, grapefruit, whole grains, and other foods that fight cancer. He even has a punching, pow-powing dance that he does to demonstrate the cancer-fighting strength of the foods that are "good for my body" and "can help make my cancer balls go away."
March 27, 2002 "At a Fork in the Decision Tree"We are still "at a fork in the decision tree", as Dr. Mody puts it. We don't have enough to go on at this point to make the decisions, so we are still looking for additional information. The doctors are busy consulting one another. We are busy researching possible new treatment options. We learned yesterday about the benefits of lemon baths from Dr. Molly McMullen. Simon and Miriam found it "wonderful" yesterday evening! (And both kids seemed substantially more at ease in their bodies today.)
Today Simon received his injection of MIBG (a radioactive substance with a superlong name--for more on this procedure, see this simple description). He will be scanned on Thursday and Friday morning. The scans take over an hour, and we continue to consent to general anesthesia for Simon to undergo the procedure (even though he's so very good at holding still!). In addition to the MIBG scan, Simon will have a bone marrow aspirate and biopsy (a brief puncture into the marrow of his pelvic bones, near the sacrum, to sample the marrow).
We will hear about preliminary results probably by the end of the day on Friday, but we don't expect to move past this "fork in the tree" until sometime next week. It's a tough place to hang out, but we're doing our best to move through it.
This evening we had a fun night out: Chinese food at a nearby restaurant, a visit to the library, and a trip to the ice cream store. We ran into a family we know from church (Dan, Heidi, Eva, and Margaret Koester), and the kids spread out Simon's coloring books on the mall floor and chased each other energetically up and down the long, empty hall. It's fun to see Simon have the energy to run. His limp is still apparent, but it's not slowing him down too much! (Simon had rainbow sherbet and gummi bears; Miriam had pistachio-almond, by the way.)
March 24, 2002 "Evaluating"Simon's doctors have been evaluating Simon's progress under treatment and are considering making some changes. The Tumor Board discussed his case on Wednesday and concluded that he is showing a mixed response to the current therapy. While most tumor sites show some reduction in size, the growth on Simon's right lung, while still small, has definitely increased in size since December. This is worrisome news, and we will have MIBG scans during the coming week to get a better picture of where live neuroblastoma cells can still be found in his body. We are hoping that many of the masses that show on his CT scans are actually dead tumor. There are several other treatment options to turn to, but it is disconcerting to have things up in the air and to hear discouraging news about his progress so far.
Simon is still considered to be tolerating chemotherapy extremely well. His recovery after Cycle #4 is noticeably slower, though, and we're still looking for his blood counts to rise. He received a blood transfusion today, and we wonder how soon he'll reach the point where he can stop daily neupogen shots (any day now, we think).
Meanwhile, he's doing quite well, overall. He has enjoyed outings with friends, including a Wild Swan Theater play called "Frog and Toad" with Andre, Lindsay, Grace, Ben, Christie, Claudia, Maya, Dörte, Miriam, Mom, and Dad. He went to church today, bringing Andre along to see how he likes it. He's been able to enjoy several days at daycare, and we hope he'll have another good week as we pursue further scan results and learn more about possible changes in his treatment.
March 21, 2002 "New Pictures!"Markus added new pictures to the Photo Gallery. Check them out!
March 20, 2002 "Doing OK"Today is Miriam's two-and-a-half-year-old birthday!
Simon is doing pretty well. He did receive a platelet transfusion on Monday, but he seems to be getting by without additional blood at this point. His blood counts were still low on Monday, but they are probably climbing, and he's likely to look a lot better on Thursday when he next gets checked.
After this morning's Neupogen injection in his thigh (which Simon covered with a funky "pop art" bandaid), Simon gave the bedroom wall a shot with a pop art bandaid, too. We all commiserated with the poor wall and praised it for being so brave during the shot.
Then Simon and Miriam went together to Linda's house this morning, equipped with recycled syringes for all 6 of the kids (plus one for Linda) and a box of Arthur bandaids. The children enjoyed a flurry of "giving shots" to each other, themselves, their dolls and stuffed animals, and the walls. We've learned about all kinds of ways to use and play with syringes at the hospital activity room. They make great cookie decorators, paint dispensers, and (in the right context) water squirters! This type of play, including the application of bandaids, really seems to help the kids process their feelings about their medical treatment (and that of their friends and siblings).
March 17, 2002 "Released Again"After engaging in St. Patrick's Day crafts, playing the Game of Life, and crashing into all manner of things during the video game "Crazy Taxi", Simon was allowed to leave the hospital this afternoon. His fever is gone, and his cultures have shown no sign of bacterial infection. His blood counts continue to hover at the lower end of things, with his white cell count beginning to climb, but his red cell and platelet counts still falling. He will continue to receive antibiotics for a couple of days, and he may need transfusions this week, but he does not require hosptitalization.
He was pretty ready to head home! After a big snooze under a down comforter (he misses the coziness of goose feathers when he's in the hospital), he woke up to enjoy the company of our friends Matt, Caroline, and Hava over supper. Miriam had spent the afternoon at their house, and it was fun to see them all at our place.
March 16, 2002 "Party Girl, Hospital Boy"Keeping social engagements while Simon is in the hospital has led to some special evenings for Miriam with her parents. On Friday evening, Miriam and Mary went to Provost Paul Courant's for a "Winter Doldrums Get-Together". It was a pleasure to be among this warm and interesting group of people, so many of whom have made special efforts to support us while Simon is ill. Mary learned that the Budget and Planning group is doing the M-Fit challenge of logging hours of exercise competitively with other departments. If they win, their winnings will be donated to a cause of Simon's choice!
At the party, Miriam tested various foods as she navigated the forest of standing adults at the cocktail-style party. She especially liked marinated salami spread with hummus (her own invention). When the conscientious caterers came by to clear plates, she forcefully defended her territory: "I'm not done yet!!" For dessert, she ate an unrecorded number of the luscious chocolate-dipped strawberries. As Mary pointed out to several colleagues, Miriam's delightfulness is one of the things that keeps us going through this difficult time.
On Saturday evening, Miriam accompanied Markus to a gathering of the Organizational Behavior department as it hosted prospective Ph.D. students. After the party, they returned to the hospital. Simon had been feeling pretty droopy, but Miriam's presence inspired him. She was out in the hall, talking with one of the nurses and demonstrating a hiding place behind a wagon that was "parked" in the hall. Simon's curiosity was aroused, and he came out to see what was going on. (No more "I'm too tired to stand!") Simon and Miriam began to chase each other up and down the hall, finding new hiding places behind parked hospital beds and giggling extensively. Talk about good medicine! And how nice to be in the hospital without an IV pole for a change.
March 15, 2002 "Up and Down"Simon has had an interesting and varied week. After returning Sunday evening from his last chemo cycle, he surprised us with vitality, going to Linda's for daycare on Monday, Wednesday, and Thursday. He enjoyed the early spring weather, ran energetically around Linda's backyard, took great delight in the newly blooming crocuses, rode his bike around our neighborhood, talked (with great volume) a mile a minute, and ate ravenously (pickles and other objects of his cravings!). He's regained the weight he lost and feels pretty heavy when we carry him around again!
We were all a bit surprised when his routine blood check on Thursday revealed a low hemoglobin (red cell) count, and Simon was called in to the clinic for a blood transfusion that afternoon. His white cell count was also low (0.2), putting him in the neutropenic range and susceptible to bacterial infection.
Today, Friday, he spiked a fever around midday, and we brought him in to the Emergency Room (as is "routine" in this case). This procedure is starting to feel familiar, since Simon had a similar pattern after cycles 1 and 2 (the same chemo drugs). After an examination in the ER and giving specimens of blood and urine for cultures, Simon was admitted to the7th floor of Mott. He'll be monitored and given antibiotics for 24-48 hours (I can almost guarantee it will be 48). His last temperature measurement was 39.6 C or 102.6 F, the highest he's had since beginning chemotherapy. If his fever subsides and no bacteria are found in his cultures, he'll be able to go home pretty soon. If he does show an infection, we'll need to stay until the infection is under control.
We learned from the nurse yesterday afternoon that it's not unusual for kids on chemo to have periods of hyperactivity while anemic (i.e., low in red blood cells). We were all surprised that he needed a transfusion yesterday, since he seemed to be having so much fun. But his somewhat revved up behavior might be explained by this effect. Previously he's been very tired and droopy when his red cell count was low. We continue to learn that nothing is predictable in this process!
Simon is now sleeping peacefully in his hospital bed. Your thoughts and prayers will continue to carry him through the ups and downs, the shivers, and the yearnings to go home to his normal life.
AddendumHey, you all are GOOD. Simon's nurse just came to check on her sweaty patient and found his temperature back down in the normal range. That dose of Tylenol probably helped, too.
March 11, 2002 "Home, Sweet Home"Although it seemed interminable at many stages along the way, Simon's 4th chemo cycle was relatively quick. His medications were completely infused by about 9:00 pm on Sunday, and after the line was fully flushed (which took nearly two hours!), Simon was discharged around 11:30 pm. He perked up almost immediately upon leaving the building. He read the 4-digit numbers marking the parking spaces (correctly, I might add) with energy. Exiting the car in our parking lot at home, he looked up at the sky and exclaimed: "The Dipper!" (and he was right, of course). He was so happy to jump into his daddy's arms as he entered the apartment. He went straight to bed under a cozy down comforter, making plans for the next day.
Simon woke up in a hungry and perky mood. (He's been very hungry and requesting yummy dishes brought to him in the hospital, like shrimp pasta--one of Grann's specialties. He's put most of the weight back on that he lost in February and early March.) After breakfast, he got started playing with playdough. Miriam didn't want to leave him, so they spent the morning at our place before heading to Linda's together for lunch and the afternoon.
This is the first time Simon has felt good enough to go to daycare the day after coming home from the hospital. We're hoping he'll have several good days now before the chemo starts suppressing his blood levels and causing his immune system to weaken. It's a pleasure to see Simon so vibrant and happy. Getting released from his captivity in the hospital (he can't leave the floor while receiving chemo), recovering from the intensive hydration and nearly constant need to urinate, and being released from his "chains" (no one likes to have an IV pole attached for 4 days without a break!) really seemed to feel good to him!
March 7, 2002 "Back on 'the floor'"Simon's blood draw (which Markus easily did at home after breakfast and we dropped off at the Cancer Center on our way to work and Linda's) revealed strong enough blood for his body to take the next round of chemotherapy. So, Markus picked him up from Linda's (where he spent the last day and a half playing with his buddies!) after lunch, and they headed to the 7th floor of Mott. Most of the afternoon was spent in a very casual waiting mode, with Simon enjoying painting, beading, and computer games in the Playroom. He also had the honor of presenting the Child Life staff there with the generous donation made in his name by Mary's friends at University Housing. He has suggested that they purchase "more small LEGO", and his mom thinks they could use more beads, especially clasps. Theresa and Devyn, two of the staff, suggested that more CD-Rom games might be good, too. They'll probably discuss it a bit more on Friday. Thank you to the folks over at Housing! For a look at Mott Children's Hospital and a photo of Devyn and Theresa, see the article Miracles at Mott in the Fall 2001 edition of the magazine "Medicine at Michigan."
Miriam and Markus arrived for a Chinese take-out buffet in Simon's room, and we all spent a little more time in the Playroom together. Around about 9:00 pm Simon's nurse hooked him up the the first chemo drugs, and he crashed into a well-deserved sleep at 10:00 pm (somehow cancer has changed our ability to do bedtime at 8:30 on a consistent basis!). We expect to be here for 4 nights.
On a progress note, Simon's doctors were impressed that he made it between cycles 3 and 4 without needing hospitalization for a fever. He received two transfusions in the interim, but he never got sick! Simon's most recent CT scan (done February 25) showed little change in the size of his tumors over the previous scan (January 31). We've been reassured that neuroblastoma is "stubborn" and unlikely to show significant decrease this early in treatment. Still, Dr. Mody called it a result that he wasn't worried about, but wasn't jumping up and down about yet, either. As we cross the half-way point in Simon's induction chemotherapy, we are more conscious of the meaning of measurements like CT scans. We hope that the tumors will do more than "not grow" (more reassuring than growing despite chemo) and begin to show signs of retreat.
March 4, 2002 "Postponement"Simon's appointment with cycle #4 of chemotherapy has been postponed, probably to begin on Thursday, March 7. We had his blood checked on Monday morning, and his "counts" weren't high enough. Both red and white cells had dropped slightly since Friday (not surprising, since he's off neupogen, which stimulates the white cells). His platelets were up to 62, but they need to be over 75 for him to have chemo.
So, we're getting some more time at home together to have fun and feel normal (well, almost normal--Simon still has occasional nausea/vomiting). Yesterday, we put Simon and Miriam's bunk bed back together (we had dismantled it in December when Simon was limping a lot). He seems to enjoy being back up there. Andre and Lindsay visited for supper yesterday, too. We expect Simon to spend at least part of the day at Linda's tomorrow, and he joined Miriam at Gari Stein's music class today!
March 2-3, 2002 "On the Road Again!"Our family's life with cancer is marked by a notable lack of travel for medical treatment. Many of the families we see at Mott Children's Hospital and at the Cancer Center come from several hours away to receive care. We have an amazingly short trip "down the hill" from our north campus location to the UM medical facilities. (This short distance turned out to be critical, by the way, when the children were born at Mott. The bumpy 8-minute ride in May of 1997 turned out to coincide with Mary being "in transition" in labor with Simon. He was born 90 minutes after our "fully dilated" arrival. In September of 1999, the road had been repaved, making the trip with Miriam a more comfortable experience as far as the driving was concerned. But she was in even more of a hurry and popped out 20 minutes later in the triage room! Passing the 4th "mother and baby" floor of Mott as we travel the elevator to the 7th "cancer" floor is a juxtaposition that highlights the variety of experience in the journey of parenting.)
Anyway, we hit the road for fun this weekend, taking advantage of Simon's good spirits. On Saturday morning, we went to the Toledo Zoo. It was a fairly mild March day, and we enjoyed having the zoo nearly all to ourselves. The animals seemed pretty relaxed. We even saw the snow leopard, who normally hides out of view.
After lunch, we got back on the road for the remaining 90 minutes to Oberlin, Ohio to visit with Mary's mom, Ann (Norm was away at meetings in Texas). As always, the kids tore up the place to find their favorite toys, puzzles, and games. Simon had recently learned that Grann and Grandad have an attic with toys in it, and he wanted to go up and have a look. He instantly spotted the 30-year-old sets of LEGO and lugged them down for play. We all had fun building the steam shovel, truck, and Swiss Villa (David and Julie, can you remember them?).
We had supper on Saturday with friends Randy, Rebecca, Schuyler and Emma. Mary and Markus even made it to the late show at the movies on Saturday evening ("A Beautiful Mind"). We connected with many friends at First Church in Oberlin on Sunday morning (Mary and Markus got married in this church in 1992!). On Sunday afternoon, we (including Grann) made a pilgrimage to a movie theater in a Cleveland suburb to catch "Monsters, Inc.". We hadn't seen it yet, and it seemed like a good first flick for both kids (neither had been to a cinema before!). Simon didn't think it was *too* scary; Miriam slept through most of it; and the three grown-ups had a good time.
We drove home after a yummy shrimp pasta dinner at Grann's. Other highlights of the trip included a forage to Mary's favorite bead store, Bead Paradise II, where she bought beads for herself and for Simon (a new convert to beading). Perhaps the biggest moment was when we all gathered at Randy, Rebecca, Schuyler and Emma's to watch Simon get his Broviac dressing and caps changed. This every-third-day ritual is something he often wants to do in private. But he was very open with his friends and wanted them to see his central line and how we care for it. He even cheerfully assured his buddy Schuyler that it didn't hurt when the line was put in. He said they gave him medicine to make him sleepy, and he "didn't feel a thing!"
March 1, 2002 "Hanging In, Hanging Out"Simon has stayed home all week, contrary to his doctors' general expectations that he will spike a fever between chemo treatments and require mid-cycle hospitalization each time. Acknowledging that Simon's case hasn't been particularly straightforward so far, Dr. Mody always smiles when making predictions about Simon, saying, "With Simon, I wouldn't be surprised if he" does the opposite of whatever's expected.
Although he hasn't completely shaken his nausea (Simon awoke at 3:00 am this morning to commune briefly with his "just in case bucket"), his energy is improving, and he's putting back some of the weight he lost over the last couple of weeks. He seems to have bursts of high spirits, when he gets an inspired idea (like dropping by Kroger for watermelon this morning and also picking up some marshmallows to roast), followed by waves of fatigue when he moans, "I'm tired!"
Yesterday, Mary could tell Simon was regaining his energy when he resisted the idea of a nap at nap time. With angry defiance, he retorted with a staccatto "Nno!!" when urged to head up for nap. This inimitable expression is both endearing and demoralizing for a person trying to parent a sick little guy. After several other projects, including various snacks, Simon collapsed with his head on the dining table, giving in to exhaustion and ready for his nap.
Simon's white blood cell count is up high enough for him to stop his daily neupogen injections (yay!). His platelets are still on the low side, but he's likely to be ready for chemo cycle #4 on Monday, March 4. We're sorry he never got well enough this week to return to a normal routine at daycare, but we know it's important to keep up the chemotherapy march. So, we think we'll be heading for a 4-day hospital stay starting on Monday.
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