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WHAT'S HAPPENING Archive June 2002

June 28, 2002 "Really Good News"

Dr. Mody just called to report that Simon's bone marrow aspirate/biopsy from last week came back NEGATIVE. What does that mean? They found no sign of neuroblastoma tumor cells in his bone marrow!! All prior tests of Simon's marrow had revealed disease, so this is a great step forward.

Does it mean Simon's bone marrow disease is gone? Well, our friend Jim Olson, a pediatric oncologist in Seattle, explained it to us this way. Go to the beach and collect a bucket of sand and then search that bucket for shells. If you find no shells, does it mean the whole beach doesn't have shells? Simon's bone marrow aspirate/biopsy involved "two buckets", that is, two samples were taken, one from each pelvic bone. The samples were carefully studied for a week. No sign of bone marrow disease sounds like great news to us!

June 27, 2002 "Surgery will be Wednesday"

Simon's surgery is set for Wednesday, July 3. Mary and Markus will have a chance to meet Dr. James Geiger in person on Monday to go over the plan and get to know him a little bit in advance.

We plan to play it fairly quiet over the weekend. Simon is feeling good, looking good, and growing hair. We're all enjoying this "week off" from chemo.

June 24, 2002 "Meetings with the doctors; plans are laid"

Mary and Markus had lengthy conversations today with Dr. Mody (Simon's oncologist) and Dr. Yanik (Simon's bone marrow doctor). Simon still has an advanced form of a tough kind of cancer, BUT both doctors voiced optimism. In addition to noting that new therapies are discovered all the time (not a very comforting thought to us, we admit), both were able to list out the many good things Simon has going for him and to lay out a plan that makes sense to us.

The Plan
Surgery July 1 or 3 (date to be determined once an operating room slot is available. . .). The surgery will involve removal of the tumor(s) on Simon's left adrenal gland AND removal of the tumor on his right lower lung lobe. Because two of the body's caveties will be opened, this surgery is considered high risk. Additional risks are possible damage to organs, blood vessels, etc. Recovery is expected to be a day or two in intensive care, another several days in-patient, and 1-2 more weeks of rest at home. Kids bounce back amazingly fast, according to Mary's Uncle Mell, who's been operating on people's kidneys for a long time.

What to hope for:

  • A successful surgery that results in nearly full ressection of the tumors.
  • Lots of dead tumor and/or tumor that is changing into the more benign forms of ganglioneuroma and ganglioneuroblastoma. What we don't want to see is lots of stubborn neuroblastoma that appears resistant to chemo.
  • A quick recovery and not too much pain for Simon.
  • In tact kidneys, pancreas, lung, etc.
  • Good surprises, not bad ones. The wise Dr. Mody advised us to be prepared for surprises with surgery.

What Simon has going for him:
  • Cancer-fighting magic. (See SIMON SAYS from June 23, 2002.)
  • Good organ function (heart, liver, kidneys going strong).
  • Good tolerance of chemotherapy to date.
  • Apparently minimal bone marrow disease, as observed in his ability to recover his blood counts after chemo.
  • Two parents (and a host of others) who are crazy about him and rooting for him every step of the way.
  • General good health, spirits, and attitude. He has energy, he runs around, he has ideas, he's part of the treatment team.
  • According to Uncle Mell, the left adrenal is easier to operate on AND the right lung has three lower lobes (the left has only two). So, Simon's tumors picked the most favorable sides of his body to grow in. (We are thankful for the smallest of favors.)
The rest of the plan
Depending on how successful the surgery is at bringing Simon to a point of good "partial remission", he will proceed directly to stem cell transplant about 3-4 weeks after surgery. OR he'll have another round or two of topotecan/cytoxan and then head to transplant. The point of the transplant, really, is to allow Simon to receive very high dose chemo for one week. The transplant will then "rescue" him from a state of wiped out bone marrow. It sounds scary, but it also sounds like one of the only ways to make cancer go away from bones.

After transplant, Simon will move in some way through MIBG therapy, antibody therapy, radiation, and accutane (cis-retinoic acid). There will be many hurdles along the way, and it seems best to focus on the hurdle at hand. Still, we and Simon's doctors must be mindful of future treatment possibilities and ensure that Simon remains healthy enough to have them when the time comes.

June 20, 2002 "Scans going well; preliminary decision is surgery July 1 or 3"

We received calls this evening from our oncologist (Rajen Mody) and a pediatric surgeon (James Geiger). Dr. Mody indicated that based on the CT results and pending review of the MIBG, bone scan, and bone marrow biopsy, Simon is as ready as he will ever be for surgery. The CT appears to show stable or slightly decreasing disease. In other words, further chemo is unlikely to reduce tumor size more dramatically, so it's time to go in and take out what can be removed.

Dr. Geiger discussed the type of surgery he expects to perform: removal of the adrenal and lung lobe tumors. The adrenal tumor is in two sections that look quite different on the CT. Removing this tumor poses the most danger to the nearby blood vessels that keep the kidney alive. Since surgery is only one of many treatment modalities for advanced neuroblastoma, the surgeon is likely to leave tumor in the body rather than sacrifice a kidney. Further therapies (chemo, radiation, MIBG therapy, stem cell transplant, antibody therapy, etc.) will be used to battle the various other sites of disease remaining in Simon's bones, spine and marrow and can also attack residual tumor at the adrenal site. As for the lung site, they will attempt to remove the tumor and leave the lobe (one of 3) in tact. If necessary, they will remove the lobe, leaving Simon with two lower lobes on that lung.

This balance feels a little tricky to explain. The overriding goal is to get Simon through the surgery process with the least disruption possible: he needs to recover fast, and he needs to have his organs as intact as possible. He needs to be ready to push on with further treatment to beat his cancer altogether.

Simon has been a rock this week, managing multiple procedures daily almost without complaint. Tuesday he had his MIBG injection. Wednesday he had his first MIBG scan, followed by a CT scan. Today he had the second MIBG scan, followed by a bone marrow biopsy (under anesthesia). On the advice of another neuroblastoma mom, we requested Propofin, which is injected in his line, rather than the gas mask to put him to sleep. He did much better than usual on waking up. (Mary was tipped off to this idea by a Danish anesthesiologist she happened to meet among the conference attendees in Park City last week.)

After we got home, Simon was hungry for lunch. Mary had the pleasure of watching him eat a whole bunch of tofu cubes, dipped in a soy/sesame oil mix and sesame seeds. He dipped and ate with the meticulousness of a gourmet appreciating a delicious food combination and the ravenousness of a boy who had had to skip his breakfast!

We were happy to see our friendly nurse Betsy back at the hospital today. She played a big role in the various procedures Simon underwent in December to diagnose his cancer. Then Betsy was out for several months to recover from surgery herself. Betsy and our other caregivers at the hospital really make the whole experience easier on us.

Simon is very tired of all these scans and is reluctant to go for Friday's bone scan, especially since it requires injection of a contrast substance. He said impatiently this afternoon that this has been enough scans already. Who could disagree?!

June 18, 2002 "Long Overdue Update"

We're back in Ann Arbor after a 9-day visit to Utah (Park City, Salt Lake City). If you caught the message Mary posted on the message board, then you have heard a bit of what happened during our trip.

The four of us flew to SLC for Markus to attend a conference on Conflict Management at a resort hotel in Park City. We also spent several days checking out Salt Lake City and meeting people from the Business School at the University of Utah. Simon and Miriam especially had fun staying at Tina and Bart's house and playing with their sons, Granger and Carter, as well as with all their great toys!

As for Simon's health and treatment progress, he had chemotherapy June 3-7 (the 4th cycle of topotecan/cytoxan) and boarded a plane the afternoon of June 7 (Friday) for the trip. A highlight on the trip was a visit to Heber Valley, UT to see Thomas the Tank Engine in person. The kids also enjoyed swimming in the hotel's outdoor pool and taking a chair lift to the top of the mountain and riding down on a luge-like slide.

Simon's energy stayed pretty strong until Thursday. We took him into Primary Children's Hosptial in SLC to have his blood checked. The test revealed that he was neutropenic (white cell count of 0.2), so it was no surprise when he started to get a fever later that afternoon. He also complained of ear pain, and we quickly returned to the hospital, this time to the Emergency Room.

Simon was admitted for two nights to receive antibiotics and be monitored. He also got a red blood cell transfusion. Things went very well at the hospital there, and he was discharged on Saturday. We delayed our return flight by one day and got home in the wee hours of Monday morning (yesterday). Fortunately, Simon had no trouble with ear pain on the plane, and he's doing quite well.

This week is SCAN WEEK for Simon: MIBG, CT, and bone scans plus a bone marrow aspirate. The doctors will be making decisions again about how to proceed. We will be eagerly awaiting positive signs of disappearing disease. The main decision now will be whether Simon is ready for surgery to remove the adrenal tumor or if another two rounds of topotecan/cytoxan is a better bet. Please keep him high in your thoughts and prayers for the best possible outcome for Simon!

June 1, 2002 "No News is Good News: Feeling Stable"

Simon continues to do quite well. In this phase of slow, steady treatment with outpatient chemotherapy every 3 weeks, having cancer is more a lifestyle influence rather than a painful experience. We still care for his central line with dressing changes and daily heparin flushes, and we badger him with various injections (neupogen, iscador, colchion), remedies, and supplements. Despite the "routine" nature of all of this, it definitely shapes our plans and especially our ability to get the kids to bed at a reasonable time.

Last weekend we traveled to Oberlin where Mary's dad, Norm Craig, received the Alumni Medal at the Oberlin commencement. As family of an honoree, Markus and Mary had dinner at the president's house and were able to meet commencement speaker Dr. Judah Folkman. A pioneer in cancer research, Dr. Folkman was glad to speak with us about Simon, especially since he turns out to be a medical school classmate and friend of Mary's uncle Mell Williams.

The type of cancer treatment that Dr. Folkman has developed is drug therapy to inhibit growth of blood vessels to feed tumors. Currently in phase 1-2 testing, these therapies aren't available to someone like Simon, who is considered to be in stable condition on chemotherapy that's working. We have consulted our doctor here and learned that the UM Cancer Center does enroll patients in these treatments, but that now is not the time for Simon, if ever.

Assuming Simon's blood counts are high enough on Monday (an absolute neutrophil count of at least 750), he will proceed with round 4 of the topotecan/cytoxan chemo regimen. His body is clearly having increasing difficulty recovering blood cells after chemo, so we may reach a point where he needs more time to recover between cycles. We expect more scans around the third week of June to evaluate his progress.

Interestingly, his head is sprouting a lovely, soft cover of hair (about 0.5 cm). We call him "fuzzy as a chick", and he's generous about letting people stroke his downy head.


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