WHAT'S HAPPENING Archive May 2002
May 24, 2002 "Chugging Along"Simon is now on day 12 of his current chemo cycle. On Monday, his blood counts were holding quite strong--noticeably better than the previous cycle. By yesterday, his white count had dipped to 0.4, which is about the same as his last cycle. We're crossing our fingers that he doesn't need additional care to make it though this low count period.
He's enjoying new playthings that he received for his birthday and having regular days at daycare. He has patches where he gets extremely upset, like going 0 to 60 in under 10 seconds on those old car ads. But he usually recovers to a "normal" temperament amazingly fast, too.
I (Mary) thought I'd share the beautiful sentiments from a message that came from San and Laz after Simon's chilly birthday party (see more on that below). People keep asking us how we know San and Laz. I've explained that we were pretty die-hard groupies and had talked to them after several performances and listened to their recordings countless times. I contacted them almost immediately after learning Simon's diagnosis in December. Their quick, gracious and eager response to offer the gift of music in support of Simon and the rest of us is testimony to how wonderful they really are! Some of you will recall that Simon was diagnosed on December 26, 2001. San and Laz came to play a concert for Simon in the lobby at the hospital on New Year's Day.
Thank you for inviting us to be part of Simon's Birthday party. The weather may have been cold, but the warmth of the assembled hearts was quite palpable. It was very special for us to be able to be part of it all.
Till the next time, thinking of all of you with love,
May 19, 2002 "An Unforgettable Birthday Party"As I (Mary) sit to write after 9 days without an update (please accept our apologies if you've come and gone without anything new to see!), I feel as though there's a lot to tell about.
Simon turned 5 on Friday, May 17. He spent an uneventful week receiving his chemotherapy outpatient at the Cancer Clinic. His hospital buddies gave him a wonderful birthday party in the infusion room on Friday. Uncomplaining about having a chemo day on his birthday, Simon woke up that morning and perkily noted: "The good thing is, this is my LAST day [of this chemo cycle]!"
Friday afternoon, we had a festive birthday snack of muffins at Linda's house with Maya, Amit, Miriam, and Linda. Friday evening, we went to Jerry, Christie, Ben, Grace, and Claudia's for a relaxing, delicious and entertaining evening out.
On Saturday, we got down to work on implementing our plans for a big birthday gathering out at beautiful Gallup Park. If you live nearby, you were invited to the party (unless we missed you unintentionally in our general busy chaos!). What a line up: a park full of playground equipment, goose families with goslings to watch, a concert by San and Laz Slomovits, Zingerman's Hunka Burning Love Chocolate Cake, a beautiful group quilt project led by Rebecca Cross, and a potluck supper with Ricardo de Majo at the grill.
The good news is that it didn't rain. But it was one of the coldest May 18ths on record (last night the temperature dropped to 33 degrees fahrenheit). Not only was the air chilly, but our picnic shelter was located on a slight rise between two parts of the "lake" at Gallup Park, putting us into a non-stop gale wind!
When I try to come up with words for Simon's birthday party, and especially for the people who came to the party, words like "intrepid", "loyal", and "good sport" come to mind. Simon himself was thrilled to have so many friends at his party. It was a great group of neighbors, daycare families, Simon's old playgroup, church friends, grandparents (Craigs), and other dear friends and colleagues.
San and Laz (Gemini) arrived to play a birthday concert, having played at the East Lansing art fair that morning in HAIL (a first for them). We gathered in the somewhat sheltered area by the playground and had a wonderful performance. Singing "The Sun's Gonna Shine" and other favorites warmed us up. Their musicianship sparkled as always, and they sang, fiddled, strummed, blew the penny whistle, limberjacked, and even played the bones (San made an historic first and successful attempt to play the bones with gloves on!). Arrayed on the play structure, our group had a great time!
Back at the shelter (which offered anything but shelter!), we turned to the enormous chocolate cake and the urns of coffee (for which we adults were deeply grateful). We huddled, Ricardo fired up the grill, and we all plunged into our cake. It even almost worked to light the candles with everyone crowded around.
But we were tired of that wind. So, we decided to move the potluck part of the party to our small townhouse in Family Housing. And it went beautifully. I couldn't tell you how many folks crammed in. The food was delicious, the kids played peacefully, the conversation flowed, and we finally got around to the quilt project.
Mary's college friend Rebecca Cross came up from Oberlin with her kids Schuyler and Emma (Randy is in Italy). A quilt artist of distinction, whimsy, and extensive experience, Rebecca devised a participatory quilt for Simon. She and Mary's mom created over 100 brightly colored and patterned hearts to be appliqued onto a quilt later. The party guests signed the hearts with messages for Simon. Stay tuned for more on this project as it continues.
Many thanks to everyone who came to the party, toughed it out, lugged stuff, brought gifts and cheer and yummy food, and helped with making it happen!! I can tell that Simon feels deeply honored and celebrated. He spent the morning today building his new Playmobil pirate ship (a gift from the group), and he and Miriam are also eagerly exploring their other gifts. What can I say, you only turn 5 once!
And, by the way, if you were planning to come to the party but got put off by the weather, believe me, nobody blames you! If you came to the shelter after we abadoned it, please forgive us!
May 10, 2002 "Progress!'Dr. Mody called this afternoon with preliminary results from Simon's CT and MIBG scans. The tumor sites are looking smaller. All of them, including the lung site. We are relieved to hear that Simon's current chemo drugs (Topotecan/Cytoxan) are moving him in the right direction.
Simon will receive another two cycles (21 days each) of the same regimen, starting next Monday, May 14. He's got a good attitude about heading into more chemo, although he'd sure like to be DONE with all this stuff.
Keep the positive energy going. We're on a roll.
May 9, 2002 "Holding Still"Simon has completed his series of MIBG scans. Tuesday: injection of the radioisotope form of MIBG, for which he had to be brave about a poke in his arm. Wednesday: scan number one, for which he HELD STILL for over an hour to have his first conscious MIBG scan. Thursday: scan number two, which was a breeze (about 30 minutes). Simon was so glad to get beyond needing to skip breakfast and have anesthesia for his scans. He held very still, even when it got hard. He took along the video of Hercules to watch while he lay there.
Mary learned a few tricks from two other families doing scans this week, and that helped us get over the hurdle of relying on anesthesia for Simon's scans. Both families have sons with neuroblastoma, the first families we've connected with here at UM who are working on the same disease as Simon.
We are still awaiting scan results, and Simon will have his CT scan on Friday morning. We'll be back to tell you what we learn! Meanwhile, keep up all the positive energy coming Simon's way!
May 6, 2002 "Trending Up and Getting Ready for Scans"Simon did get to go home late Saturday afternoon, keeping his hospital stay to one night. He was thrilled to be headed home on a lovely sunny day. His blood counts are steadily on the rise, and he has shown no further signs of fever.
Markus and Miriam did well in the Burns Park Fun Run on Sunday morning, and Simon and Mary hung out at the playground and enjoyed a relaxing Sunday morning.
Tuesday starts a string of scan-related appointments for Simon. He is scheduled for an MIBG scan on Wednesday and Thursday, and he will receive an injection of the radioactive isotope on Tuesday afternoon in preparation for the scan. Wednesday's scan will require anesthesia. On Friday (May 10), Simon will have a CT scan. The MIBG scan will help the doctors see where Simon has live neuroblastoma cells. The CT scan helps the doctors measure the size and location of tumor masses. To protect his thyroid from the MIBG, Simon is receiving SSKI drops (iodine) twice a day this week.
Simon is leading the way in feeling relaxed about the upcoming scans. Mary and Markus are trying to relax, too, but we feel the tension of awaiting a measurement of Simon's progress.
We welcome all the strong thoughts, prayers, visualizing, vibes, and love you can send our way as we proceed through the week and look for encouraging signs of disappearing disease.
May 4, 2002 "Back at Mott"After a LONG stretch without hospitalization (the last one was March 17), Simon needed to come in yesterday. He is 8 days post-chemo (or day 13 of this current cycle), his white blood cell count is 0.3 (below the 0.5 bare minimum for the body to fight infections), and he spiked a fever on Friday morning. So, after a calm Emergency Room appearance, he was admitted to Mott Friday afternoon. He spent a quiet night here with Mary, and he's awaiting a transfusion of red blood cells today (hemoglobin 7.3). His platelets are doing pretty well at 54, but that may require transfusing later, too.
The "drill" for this kind of post-chemo, low-immunity fever is generally the same: blood cultures to check for bacteria (none so far), intravenous antibiotics to head off a serious infection (just in case), IV fluids, and blood transfusions if indicated. Simon's general spunk is good, with some tough patches (his Neupogen shot without Dad last night was very hard!). So, we believe he's not in danger, but we're spending some sunny days cooped up in the hospital at the doctors' orders to be safe.
Aside from general discombobulation after being spoiled by many weeks of hospital-free nights, this stay is no big deal. Mary and Markus are logistically challenged to figure out who's sleeping where, what stuff needs to go where, what Miriam's doing, etc. But we think we'll get back in the groove pretty fast.
Markus and Miriam are planning to run Sunday morning in the Burns Park Run (Markus does a 5K, and Miriam is in the 200 meter kids' run). Simon will probably need to stay a second night, but we're hoping he might get to go home today. We'll see what the day brings.
As you can see from recent postings on Simon's MESSAGE BOARD, people who have seen Simon lately are noticing how strong he looks, and how much he's been growing!
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