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February 25, 2002

Simon has been weak, although we have been able to keep his nausea in check more often. On Sunday, inspired by a puppet show at the library that we went to the day before, Oma and Markus performed a little puppet play for Simon and Miriam (in which a syringe was the most important prop...). Simon's friend Marina and her parents came over on Sunday afternoon. Marina's energy spilled over to Simon and he ventured out to the playground. Back in the house he was fascinated by the magic tricks that Marina's dad Nathan performed for the kids. 

Today Simon got another CT scan to check on the progress of his treatment. He has become a real pro at this procedure, lying still as a rock while he is being moved through the scanner. Because of his low blood counts he needed 4 hours worth of blood transfusions today. Oma, Mary, Markus and Bob the Builder attempted to cheer him up while he was sitting there hooked up to the IV. Guess who was more successful in getting an occasional smile out of him?

February 20, 2002

Simon has been quite miserable over the last four days. He feels nauseated, has to throw up several times a day, and suffers from diarrhea and major gas. Mary and I have become quite concerned about how scrawny Simon is getting. We hope that we can regain some of his weight over the next 10 days before cycle #4 starts. Although Simon is getting tired easily, he has his bright moments: Today he requested to go on a fairly long walk in the stroller and baked a chocolate cake with me (Markus). He even licked the melted chocolate chips from the pot. Unfortunately, we saw them again a couple of hours later in what we have come to call the “Just in Case Bucket.” 

Simon’s Oma came today from Germany and is going to stay with us for a week.

February 16, 2002 Home at Last

Simon's hospital week was NOT FUN. It was a combination of boring, nauseating, and long-feeling. He had less inclination than usual to go to the playroom or try the Nintendo games in the "Park" (a lounge on the 7th floor of the hospital). It also didn't help to have his primary caregivers absent and sick. He probably had the same bug, although the symptoms of headache and vomiting were hard to distinguish from chemo "side effects."

We're crossing our fingers that the drugs this week (cisplatin and etopisode) will have their intended aggressive effect on his tumors and won't cause any of the collatoral damage they have been known to inflict (hearing loss, kidney damage). These effects are not likely to show up immediately, but since these drugs will be repeated for cycle #5, Simon's hearing and kidney function will continue to be checked periodically.

We'll be sitting tight at home, hoping for Simon to resume normal eating and feel better soon. He did a lot of peaceful sleeping last night and napping today. He gets to wait until Monday before beginning his neupogen injections this time, so that feels like a bit of a holiday. We'll see if he can make it to the next cycle without needing hospital care again for infection/fever or transfusions of blood or platelets. However, his doctors pretty much expect too see him again for one reason or another to get him through his post-chemo "low."

Mary updated SIMON SAYS this evening, so hop over and take a look if you haven't been there yet.

February 13, 2002 In for Chemo #3

Simon had a good weekend, enjoying a festival called "For the Love of Music" and visiting with his friend Marina to celebrate her fifth birthday. Grandad was here for the weekend, too.

On Monday morning, Simon went in to Mott Hospital for a bone scan under general anesthesia. This scan is part of his protocol, although it's not clear to us that it has any direct benefit to Simon's health or progress tracking. It appears that the doctors doing the clinical study want to compare bone scans for all patients at this point. It's hard to be at peace with all aspects of Simon's treatment plan.

While under anesthesia, Simon also had a bone marrow aspirate and biopsy. Dr. Mody called Tuesday to let us know that the preliminary result showed only a few abnormal cells, which the pathologist with look at further. It seems that the disease in Simon's marrow is responding to treatment and decreasing! Dr. Mody has ordered a repeat CT scan for next week, since both he and Dr. Yanik are hoping to see more dramatic results on his tumor sites than were observed on the January 31 scan.

After recovering briefly from his procedures, Simon was checked in to the 7th floor to begin Chemo cycle number 3. He had begun the morning with a bout of vomiting, but we decided it was from a cough he had and chose not to postpone planned procedures. We're still wondering what really made him throw up, though, since others of us have proceeded to fall like flies to a nasty, although brief, stomach/headache bug. I (Mary) shrugged off a headache during a few hours at work on Monday morning. By late afternoon during my hospital shift with Simon, I needed to lie down and rest. When I had to throw up, I knew I couldn't stay overnight at the hospital. Markus had an early plane to catch on Tuesday, so Gran got her big chance to overnight with Simon at the hospital!

Tuesday morning, I still felt crummy, so Miriam went off to Linda's daycare via neighbor Lindsay's "taxi" service. I snoozed on the sofa and recovered, while Mom hung out with Simon at the hospital. By late afternoon, I felt ready to go for a visit, but not for an overnight. Miriam spent the night at Linda's (what a lovely adventure for her!), Gran settled down for another night with Simon, and I slept all alone in my apartment for the first time in years!!

Wednesday morning it was Gran's turn to spend the day on the sofa at home, dealing with the bug! As Simon continues to complain of a headache and has occasional vomiting, I wonder if it's the chemo or the bug (or probably both, poor guy). But he's mostly well enough to say that he wants to go home! I'm doing close to fine now, Gran sounded much better, and Markus got home from his trip. So, we should be more "normal", at least in our family "staffing" for the remaining two days of Simon's chemo treatment.

So many neighbors and friends responded to my calls for help the last couple of days. Carol, Sukanya, Caroline, Jane, Jodi, Lindsay, and Linda all pitched in with extra deliveries, yummy food (yes, some of us have appetites!) and other kinds of help. Thanks so much!

Februry 8, 2002 Home from the Harvest

Good work, team! All of your energy must have buoyed Simon this week when he went to the hospital for his stem cell harvest. The first day's collection on Monday exceeded the amount required to send off to the lab at Children's Hospital in Los Angeles for purging. I heard from a nurse that they were "looking for 15 and got 25". When I asked Dr. Yanik what that meant, he gave me a translation in hundreds of millions of cells, saying that Simon's yield had been enough to feel confident that the purging process, which depletes the overall quantity of stem cells in the sample, would leave plenty of cells behind for transplanting in the spring/early summer. Dr. Yanik took advantage of Simon's being in-patient with a temporary catheter in his right groin area to take a second harvest on Tuesday. Part of that harvest will be kept frozen in Ann Arbor as a back-up in case Simon needs it at some point. He told me that Simon's yield had been larger than 90% of his patients'. We take all of these indicators as good signs!

Just exactly how does one harvest stem cells, you might wonder? Well, they hooked Simon up via the two lines in his groin catheter to an apheresis machine. (The catheter was implanted early Monday morning in a short surgical procedure under general anesthesia.) The apheresis machine had lots of clear IV-type tubing that wrapped around various places and took Simon's blood through a centrifuge to separate out the different components of his blood by weight. Then it skimmed out the layer just below the white blood cells and above the red cells to capture the immature stem cells. The nurse described this as "red grapefruit colored", although I (Mary) found it pretty red as it collected in a bag at the top of the machine. A second bag collected plasma (a beige color). After the stem cells had been removed, the machine cycled the remaining blood back into Simon. He spent 3 hours each day hooked up to the machine, enjoying "Winnie the Pooh" to while away his immobility. Getting the catheter pulled out on Tuesday afternoon was the hardest part, since Simon was conscious, and he knew he'd been asleep when they inserted it. Good thing they had a great beanie baby DRAGON as a reward for his bravery. He immediately named the dragon "Puff".

Wednesday, Thursday and Friday Simon was able to join his buddies Jacob, Maya, Amelia, Peter, Marley, and, of course, Miriam at Linda's house. We had a relatively normal-feeling three days. Changing the dressing on his central line (every three days) and a daily flush of the two "lumens" (tubes) on his line with heperin solution have become a part of our routine. Mary and Markus are semi-pros now at drawing up syringes and following clean techniques to avoid contamination. Miriam is also learning to help more by not jumping on the bed next to Simon and taking on jobs like carrying away the trash. Both kids find these processes easier when they take time to give shots and apply bandaids to their baby dolls and stuffed animals. A great de-stresser for us parents was deciding to "de-ration" bandaids. The kids play with as many as they like, and visitors like Gran (Ann Craig) have contributed groovy bandaids to our overall supply, like flashy silver ones and pop art ones, to round out the cartoon characters and dinosaurs.

On Friday morning, Simon had an EKG and an Echo cardiogram to monitor the health of his heart. The next cycle of chemotherapy (scheduled to begin on February 11) involves drugs that can be harmful to Simon's hearing, heart function, and other organs. We are hopeful that he will get by without long-term damage, but we are reminded by these tests that his treatment protocol uses seriously strong medicines to eradicate serious tumors. Simon's body still has a lot of hard work to do! Keep sending the good healing energy our way!

February 3, 2002 Progress

Simon has been home since Thursday evening, enjoying many of life's pleasures: sledding on weird ice-covered snow; movies in huge DVD format at James, Jay, and Percy's; all the toys at home; play time with friend Andre; a trip to the library for a huge stack of videos and CD-Rom games.

Before leaving the hospital on Thursday, Simon had a CT scan to assess the progress of the chemotherapy on the tumors. The preliminary report is good! The spinal site is 20-25% smaller, and the primary site on his left adrenal gland is 10-12% smaller. Although the reduction in the primary tumor is modest, Dr. Mody said the tumor looks more cystic, probably indicating that the tumor is dying. The bone lesions are unchanged, and since they are the last to go away, this is expected. The good news is that they aren't any bigger. The only "surprising" result was that the lung site appears to have grown somewhat. Dr. Mody says that tumors normally respond in the same direction with chemotherapy, so it's unclear what this may mean. We'll wait for a final report on this CT scan to evaluate further.

The next step is Simon's Stem Cell Harvest, which will start on Monday. We were at the hospital for about 5 hours today getting his blood count checked to be sure he's ready for tomorrow's procedure. Everything looked good, but his platelet count was low. That's the part of the blood that makes it clot. Since the stem cells will be taken out with a machine that pulls out his blood and sorts out the stem cell, it's important for his blood to clot properly. This afternoon he received a platelet transfusion.

We'll head to the hospital for a 7:00 am surgery to implant a catheter in Simon's groin. Once this is in place, the stem cell harvest can begin. If they get enough stem cells in one session (4 hours on the machine), he'll be able to go home. They're looking for 10 million cells per kilo of body weight. A mere 170,000,000 cells!!! I haven't inquired yet just who will be counting these tomorrow... Amazingly, they will find all the cells they need by taking them out of Simon's blood. 1% of the body's stem cells are "traveling" about the blood system at any time, and Dr. Yanik, the bone marrow specialist, told us that the target of 170 million cells represents only 1% of the total stem cell quantity in Simon's body. The numbers rather boggle the mind, but they reassure us that Simon won't miss the cells particularly.

If we need another day's collection, Simon will stay overnight and repeat the procedure on Tuesday. As soon as the harvest is complete, the sample will be rushed to a laboratory in Los Angeles to be purged of neuroblastoma cells. Purging is still an experimental procedure, and Simon's participation in a clinical trial enables him to have this done (he was randomized to receive the purging treatment). Purging involves injecting the sample with an antibody that is marked with an iron molecule. The antibody attaches to neuroblastoma cells, and a magnet pulls these cells out of the sample. They process it again and again until all detectable cancer cells are removed. When Simon receives the stem cells back into his body in May/June, they should be free of neuroblastoma cells. Too much information? I hope I've presented it more or less accurately here. It's a lot to get our heads around.

So, if you're in a mode of hoping and praying for Simon, please keep him and all the medical professionals in mind this week as they do this important work to ensure Simon's long-term recovery from his cancer.



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