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WHAT'S HAPPENING Archive August 2002

August 24, 2002 "Healing the Children"

Simon is doing OK. After 11 hours of sleep last night, interrupted only by calls for the urinal in 90 minute intervals, he woke up quite energetic. After a bath and a little breakfast of raisin bran and bacon he spent the day playing with his new LeapPad, his dinosaur computer game, and some beading. Grandad came to visit from Oberlin and Miriam visited (wearing a mask) to show off the haircut she got with Grann and Grandad. Tonight, Simon, Mary, and Markus had a yummy Chinese take-out dinner (without stir-fried vegetables for Simon, though) and snuggled up together in Simon's hospital bed to watch the second Babe (A Pig in the City) movie.

Two months after Simon's birthday we were finally able to send the money donations he received for his birthday to Healing the Children, a nonprofit organization dedicated to securing donated medical and surgical care for foreign children who are in need. We got $300 together, which went to this great organization. A little while ago they sent the certificate depicted below. Thanks to all of you who participated in this special gift!

August 23, 2002 "Underway and Doing OK"

Simon was admitted to Mott on Tuesday afternoon. His cold had improved some overnight, and we all agreed it was time to get started.

On Wednesday he began to receive the first chemo drugs: Carboplatin, Etopisode (VP-16), and Melphalan. He's also getting Zofran and Decadron as a pre-med to help with nausea. And, as always, he's hooked up to a bag of IV fluid to keep him super-hydrated and assure that he voids his bladder at least every two hours. At the call of "Peeee!!!" those of us caring for Simon (Mary, Markus, Grann/Ann) jump to attention, "quickly" put on those plasticky gloves, grab the urinal and arrive at Simon's bedside ready for action.

Aside from being alert to Simon's need to pee, we are also working on getting oral medications into him. One antibiotic (with "flux" in the name) is intended to clear Simon's gut of potentially infection-causing bacteria. But it makes him gag. He just can't get the liquid suspension form down. The capsules are enormous, and he has yet to swallow a pill in his life. Yesterday (Thursday), we discussed this with the doctors. The attending, a nice man named Dr. Cooke, decided to try it himself. He confirmed how bad it was, saying he couldn't even pretend it was tolerable. He said it was bitter, with a lingering aftertaste.

So, we're supposedly exploring other options to get something like the "flux" stuff into Simon's intestines (an IV antibiotic can't do that). The other medication Simon needs to get down twice a day is called Glutamine. It was strongly urged by other parents on our Neuroblastoma Listserv to give Simon Glutamine (an amino acid) to help prevent terrible mouth sores post-chemo. We're dumping the contents of four horse-sized capsules into a cup and mixing it with grape juice (same as we've done at home with Ambrotose). But it's very gritty and doesn't dissolve well, features that make it rather unpopular with Simon.

The daily routine here keeps us pretty busy already: teeth brushing 4 times a day (again, mouth sores are a big, bad deal for stem cell transplant patients), bathing daily, dressing change (sterile technique) every other day, oral medicines, daily weight and girth check (they're monitoring for liver enlargement), blood work, and "exercise." The staff artist, a lovely lady named Adrienne (the creator of Simon's parrot door sign, for those who've seen it), has provided us with a transplant sticker chart. We get to put stickers on for each of our accomplished activities. So far it seems more important to the parents than to the patient, but it's a big help for keeping track and helping the days stop blurring together.

As to "exercise," Simon is now very limited. He is not officially isolation, but the following restrictions apply: no one under 12 who attends school/day care is allowed to visit (that includes Miriam); Simon can't go to the playroom; Simon can't walk out in the halls during the day when lots of people are around; he can go out in the evening, but he must wear a mask over his nose and mouth; only healthy adults my enter his room and must wash their hands; strict food rules apply to avoid any foodborn microbes. It goes on and on.

Anyway, I (Mary) am trying to keep this brief and get off the phone line here in Simon's hospital room. We think we have a working ethernet wall port now, but we're still trying to hook ourselves up with an ethernet cable. . . Since Simon is in a dedicated single room (and it's quite a nice room, as hospital rooms go), we only have one phone line. In most rooms up here, we've had single occupency of a double, so we're used to using the second phone as our modem line. Details, details. It's taking some effort to get "established" for this extended stay ( we expect to be here until at least September 11--oh, I've just realized Simon's "day 14" post-transplant will be the eleventh).

Stay tuned. Sorry we've been slow this week to get information out. We can feel all of you out there, caring and sending the very best wishes for Simon. Be assured, we have our "antenea" on the highest signal level, and we are receiving you loud and clear!

August 19, 2002 "False Start"

After postponing the start date for Simon's transplant to Monday, August 19 (if you were reading the site very carefully, you may have gleaned this information from the TREATMENT page), we learned today that we are again in a short holding pattern.

Simon has had mild symptoms of a cold since about Friday (runny nose, raspy voice, sneezing, a little eye gook). So, at Simon's appointed time this afternoon, Dr. Yanik took Mary and Markus through Simon's current status relative to transplant and his current state of disease. This discussion took quite a while (see below).

Then he took a look at Simon, including swabbing his reddened throat. He decided to send Simon home for another night in his own bed to see if he can't start transplant in a healthier state. Because Simon remains fever-free and energetic, no one is particularly concerned. But we're all aware of how hard the transplant process will be on his body. We don't want him going into it sick. Dr. Yanik wants to see him again at 1pm on Tuesday. He's likely to admit Simon at that time. The latest Simon can be admitted is Wednesday if we want to get started this week (and we do). They have to time the chemo and transplant so that the transplant takes place on a weekday. It's all rather delicately balanced, isn't it?

As to Simon's current status of cancer disease, it's a mixed picture. The battery of tests over the past two weeks have revealed the following:

The good news:

  • heart function (Echocardiogram, EKG): normal
  • kidney and liver function (blood work, GRF for kidney function): normal
  • CT scan: "clean" (no sign of tumor/lesions)
  • bone scan: "clean" (no sign of tumor/lesions)
The not so good news:
  • hearing (audiogram): slight loss in higher frequecy range
  • bone marrow aspirate: positive (boo, hiss--after two clean apsirates, it's disappointing to hear they found neuroblastoma this time--we guess it's just those different buckets you happen to pull up full of sand, right?)
  • MIBG scan shows more active disease (right femur, left pelvis, kidney region where the primary tumor was, and along the spine) than Dr. Yanik prefers to see. Still, he supports this transplant as the next step in Simon's treatment and, we hope, cure.
While it feels like a rollercoaster to be all geared up to go in today, we've had a pretty nice time enjoying each other's company and NOT having Simon at the hopsital. We'll write more soon.

August 11, 2002 "Still Having Fun; Still Working up to Transplant"

We had a busy week of tests last week (audiogram, blood tests (more tubes than we've ever seen before!), Echocardiogram, EKG, bone marrow biopsy (the only procedure requiring anesthesia), a CT scan and a bone scan). Simon's MIBG scan series was postponed by a week because the isotope was faulty and could not be used. The substance he is injected with for the scan comes from Canada, mid afternoon, every other Tuesday. So, we're waiting for another chance this week.

The delay in the scan may mean a slightly later starting date for Simon's stem cell transplant. We were expecting him to be admitted on Thursday the 15th, but we'll soon find out if it will be a few days later.

Simon recovered nicely from his last round of chemo (July 15-19). Oddly, although it's the same drugs he's been receiving since April, he's now losing most of the lovely new hair that had been growing in since late April. His spirits are high, and he's looking forward to kindergarten in the fall and to having his cancer go away after a long time in the hospital for his transplant.

August 1, 2002 "Having Fun; Working up to Transplant"

As we prepare ourselves for Simon's autologous stem cell transplant to begin on August 15, we are learning many sobering details of the process and its extraordinary discomforts for Simon. (More on this soon on our TREATMENT page.)

Meanwhile, we are having an awful lot of fun, going through life as normal as can be. Simon has recovered well from the most recent chemotherapy (July 15-19). His blood counts are recovered enough today to stop the nightly Neupogen injections that stimulate white blood cell growth. His healing from the surgery seems almost complete. And he's finding the energy to run around and have a good time, although he also has patches of exhaustion and cranky moods.

We spent last weekend in Oberlin with Grann and Grandad and Mary's sister Julie and her kids Margot (9) and Nathan (5). One highlight of the time together was seeing the Kelly Miller Circus. We were so lucky that the circus came to town on a day when we were there!

This evening, we joined a potluck with current and former neighbors. Five families had a delightful and delicious time. I (Mary) watched Simon run about and play, and I, too, immensely enjoyed the clear weather, good food, and good company. This pleasant scene of families at play was a startling reminder of how "normal" and beautiful our current lifestyle is. It seems to defy the gravity of Simon's health situation. We are grateful for the chance to have fun with great folks.


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