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WHAT'S HAPPENING Archive October 2002

October 24, 2002 "Still Waiting for the Next Steps"

Simon's blood counts are so strong now that they require no particular mention on a daily, and now even weekly, basis. He's recovering fabulously from his stem cell transplant. His appetite, energy, and mood occasionally remind us that he is not a normally healthy 5-year-old kid. Still, considering all the hassle, restriction, and discomfort he's forced to live with, we all think he's doing terrific!

As must be obvious to the faithful followers of this Web site, we aren't finding the time to do updates nearly as often as before. Partly it's Markus' teaching schedule (he hasn't done any updating of the site since the semester began), partly it's the added time crunch of managing two careers with one child who needs to be at home full time, and partly it's hard to sustain the energy of communicating about the arduous process of getting Simon through cancer treatment.

There have, however, been several items of note over the past couple of weeks, some of which will require photos to tell the whole story, but for now, how about a summary?

The fun stuff

Simon's Make-A-Wish party was on Friday, October 18. Chris and Jim, our two friendly volunteers, showed up to place the enormous pile of boxes that arrived from Simon's "Shopping Adventure" Wish: Simon had the chance to order everything he wanted from the Playmobil catalogue while he was in the hospital in September. Much to his credit, he limited his selections to the remote control train sets, various vehicles (including a coastguard boat and rescue submarine, both of which are very fun in the bathtub!), and all the stuff for the farm. We are still in the process of unpacking and building the various items, and we are working desperately to make infrastructure changes (=many new shelving units) to help us store the thousands of little pieces. . .

Simon continues his daily "at home" kindergarten with his lovely teacher Denise. Except for when his clinic and hospital visits preclude the timing, Simon has a two-hour kindergarten session every day. They are working on the alphabet, doing a lot of reading, and generally enjoying each other's company. We are so grateful to the school district for this opportunity!

The not-so-fun stuff

Simon's three-week-long post-transplant work-up to establish the current status of his disease is very near completion. We are probably a lot more nervous about all of this than we have been able to let on. So far, we have partial results. Simon's organ function seems to remain fully in tact. He continues to show a slight hearing loss. The tough news is that his bone marrow biopsy showed active neuroblastoma cells. The pathology report indicated that the cells are "differentiating" (which means they are responding to efforts of the body and of treatment to erradicate them and are thus looking partially normal). Differentiating is better than non-differentiating, although we sure were hoping for none at all. The most discouraging news from the biopsy is that the disease involvement is "approximately the same" as what was seen on the biopsy done in early August, pre-transplant.

Today will be the second of Simon's MIBG scans, and this is the part of the work-up that will most determine the next course of treatment. Dr. Yanik is already certain that some form of aggressive treatment is required, based on the bone marrow biopsy results alone. If Simon's MIBG scan shows MIBG-avid disease, we expect Dr. Yanik to recommend MIBG therapy (injected radiation). With any luck, the 6-month FDA hold on this treatment will finally be lifted (Simon would otherwise have had the treatment prior to transplant in August).

As you can see, we are in new territory now, where indicated therapies may not even be available. Simon's next treatment options are no longer "off-the-shelf" chemo protocols. We will need to deal with more experimental, and less reliably available, treatment options.

We are meeting today with Dr. Yanik to learn the results of the MIBG scan series and to go over the next options. If his scans no longer show MIBG-avid disease, then the MIBG therapy is not an option, and we will likely be looking at a monoclonal antibody therapy offered at Memorial Sloan Kettering in New York City. We will try to keep you all posted. Please keep sending your love and best, best wishes to Simon for a pathway to recovery from this awful disease. Dr. Yanik says we can beat it; we just haven't beaten it yet.

October 10, 2002 "Zooming Ahead"

WBC: 4.3 (normal 4.5-13.5 K/MM3)
Hemoglobin: 10.0 (normal 12.5-16.0 g/dl)
Hematocrit: 28.2 (normal 36.0-49.0 %)
Platelets: 103 (normal 150-450 K/MM3)
ANC: 3.2 (normal 1.8-10.1 K/MM3)
Transfusions: None since 9/20!!

Simon continues to gain in strength, taking occasional interludes with his "just in case bucket" pretty much in stride. While his blood counts have recovered remarkably (everything is essentially in the normal ranges now!), his digestive system sometimes needs a break. The doctors say that his bowel is moving slowly as it recovers from his hospital stay and weeks on IV nutrition. So, when the bowel is too slow, it sometimes tells the tummy to "ship that stuff back outta there!" The good news is that Simon usually feels better when it's over, and it's only happening a couple times a week.

The big news is that Simon shed the training wheels from his 12" two-wheeler bike on Sunday. Over the past several days he's enjoyed more and more stability on the bike. Today was the big day when he and Markus went out to buy a new 16" bike. Simon is thrilled, and he can get himself started now without any help! And he loves to ride fast, just like the rest of the boys, including his new friend Marcello (pictured below).

Simon has also begun to sleep under his beautiful quilt of love. Begun during his 5th birthday party in May, the quilt project has come nearly to a close, thanks to the many hours of labor put in by Ann (Mary's mom) and the amazing design concept and stitching provided by quilt artist and friend Rebecca Cross. The quilt is covered with gently stuffed, colorful hearts. Each heart has been signed by someone from Simon's enormous caring community--from the hospital, from First Unitarian Universalist Church in Ann Arbor, from First Church in Oberlin, neighbors and friends. The quilt is a wonderful, magnificent, colorful, cuddly wrapping of incredible protective love for Simon.

This week is also the beginning of Simon's post-stem cell transplant "workup"--it's a battery of tests to see how his various organs are doing (very well, we hope) and how his cancer is doing (not at all well, we hope).

So far this week he's had a GFR (kidney test), Echo and EKG (heart tests), audiogram, and a bone marrow biopsy. Results are in general still pending, and the only thing we know for sure is that Simon has lost some hearing in the highest frequency range tested.

Today Simon had a visit with Dr. Molly McMullen-Laird at Community Suppported Anthroposophical Medicine. We are able to restart the remedies, including Iscador, to support Simon's overall well-being and boost his immune system.

On Friday Simon will have a CT scan. Full results on the status of his disease won't be available until he has the MIBG scan series Oct. 22-24. For tomorrow's CT scan, we are hoping the scanner can't pick up a thing in Simon's body. No residual masses. No residual bone lesions. And absolutely no new masses. If you are able to put some energy toward these big, important hopes, please do! We thank you for staying with us!

October 2, 2002 "The Long Recovery"

WBC: 4.3 (normal 4.5-13.5 K/MM3)
Hemoglobin: 9.6 (normal 12.5-16.0 g/dl)
Hematocrit: 26.8 (normal 36.0-49.0 %)
Platelets: 53 (normal 150-450 K/MM3)
ANC: 3.1 (normal 1.8-10.1 K/MM3)
Transfusions: None since 9/20!!

Time has taken on a slower-feeling pace. We are all adjusting to new routines, which probably would have been pretty major even outside of Simon's illness. Here's what's up (and why it's been hard to find time for Web-updating):

Markus is teaching one section of the course Organizational Behavior 300 at the University of Michigan Business School (this is a core course for students in the Bachelor of Business Administration major). He's getting along pretty well, but it takes most of his professional energy. He teaches Mondays and Wednesdays and also holds office hours. Markus is tending to work more from his office at the B-School than before.

Mary is back to work after 3+ weeks off during Simon's hospitalization for his stem cell transplant (what a good idea THAT was to drop all work commitments for that crazy period of time!). Her schedule is now "off" to accommodate Markus' teaching days. Her old schedule was M, W, Th, F in the office. Now it's Tu, Th, F with some time to work on Mondays and Wednesdays while staying home with Simon. Even this small amount of change has led to major amounts of confusion for this tired-out mommy . . .

Miriam is going to Linda's house 5 days a week now. That's a first for our kids, who have always been home one or more days per week with a parent. She's still going to music class on Tuesday mornings at Gari Stein's, so one of us is there with her.

Grann (Ann Craig) is back in Oberlin. She returned toward the end of last week. So far, so good without a third adult and second car to handle the various shuffles during the day. She has been a real trouper and definitely spent more nights on our sofa than in her own bed in the month of September.

And Simon, whom you all really want to hear about, is doing well. He keeps amazing people, including his medical care team. He looks great (when did he not?). His spirits and energy are up. He enjoys riding his bike and running around (he's very speedy, something that wasn't true a year ago when his limp first became apparent). And (if I get around to updating SIMON SAYS any time soon) he's full of amazing commentary. Currently, Simon is going to the cancer clinic on Mondays and Thursdays. The drill is this: blood draw; weight, height, blood pressure; doctor visit. If Simon's counts are below the transfusion thresholds, he stays for the transfusion. However, he continues to "hold his own". Everyone expected him to need platelets on Monday, but his count had actually increased on its own since last Thursday. His nutrionist stopped by to see how he's doing food and drink-wise. Simon was able to drop his IV nutrition about 10 days ago and drop subsequent IV fluids at home about 5 days later. When the doctors ask, "What's he currently taking?" we just shrug and say, "Nothing."

Simon sees his homebound kindergarten teacher, a lovely lady named Denise, for about 2 hours a day. They are working on the alphabet, among other things. Although working with a tutor for several hours at home can't really replace the socialization of the kindergarten classroom, we feel good about providing him with a substitute way of starting his formal schooling.

And what's next? Simon is scheduled for a battery of tests and scans later this month. The CT scans and MIBG scans will be the most important in determining what happens next. Dr. Yanik says there is a 50% chance that we will find that Simon is cancer-free (as far as scans can tell). If there is "no evidence of disease" (a phrase abbreviated as "NED"), Simon will head straight into antibody therapy and accutane therapy.

If there is evidence of disease, Simon will have MIBG therapy (injection radiation). Recovery from this therapy may necessitate another stem cell rescue (similar to the transplant in August). Then, once he's recovered from that, he will proceed to the antibody and accutane therapies.

Is it possible that Simon is, and will remain, disease-free simply after this transplant? Dr. Yanik says the chance that he's still alive in three years post transplant with no further therapy is 31%. His advice ("if this were my child . . . ") is to proceed with intensive therapy to ward off the chances of relapse.

So, wait with us. Forgive us for our eratic updates on this site. And enjoy the below photos, which capture our current mood quite well.

A late-night snack of a Simon-and-Miriam-favorite: cubes of tofu dipped in sesame oil/soy sauce and roasted sesame seeds. Yum!

Recent fun with dress-ups, including Simon's portait of Mary and Mary's "Self-Portrait with Barbie-Rapunzel Tiara".

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