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WHAT'S HAPPENING Archive July 2002

July 22, 2002 "Crystal Lake"

We were so happy to have the chance to see Lee and all of Mary's Williams cousins, with spouses and children, up at Lee and John's place on Crystal Lake. We drove up Friday afternoon and had two good days of visiting and play. For those of you who have been keeping up on Simon's message board, we got to see some of our big message contributors: Madi, Lexi, Curt, and Lawrie; Liddy, Justin, and Jake (no Martin); Steve, Annette, and Rowan; Lucy, Ben, Grace, and Logan; and John, Diane, Scott, Donna, Todd, Tait, and Austin.

Simon was pretty sad that he couldn't swim in the lake, because of his Broviac line and the risk of infection. While wading near the shore, he slipped for an instant into the water. Mary's alarm button went off, and quickly she got assistance from Curt and Ben to retrieve our medical kit and do a quick dressing change. It appears that all is well, but the episode added some drama to the morning.

Simon told Mary that he wanted to get rid of his dressing (meaning his Broviac). We talked about how important it is for him to have a central line. We talked a bit about his upcoming stem cell transplant and how he'll need it. Wise child that he is, he said, "I don't want my Broviac, but I DO want it."

The new photo on Simon's home page is from our Saturday night bonfire in front of Woodgie's home on Lake Michigan. It was a magical time of marshmallow roasting, sunset watching, and beach running.

July 21, 2002 "Various recent activities of note"

Despite surgery and chemo, we've been able to have some good fun this month. We started the month off with a concert at Ann Arbor's Ark by the group Two of a Kind. We enjoyed an hour of fresh songs and messages, performed by near classmates of Mary's from Oberlin College. David and Jenny Heitler-Klevens are creative musicians with a serious social purpose behind their music. David's degree in composition from Oberlin shows through in his song-writing.

We've been enjoying several recordings that we bought at the concert. While still quite weak after surgery, Simon's sparkle began to return while listening to the upbeat song "Red, White and Blue". Waving his arms and bouncing as he sat on the bed, he exclaimed, "I like the wild ones!!" Click here for a lovely sample of another song called "Love Makes a Family."

The weekend after Simon got home from the hospital, we saw our final subscription show from the Wild Swan Theatre season. It was "Jack and the Beanstalk." The company did a good job of presenting this show without making the giant too scary. They portrayed the giant as a foolish guy who couldn't keep his lines straight. He kept walking on stage saying, "Fee, Fie, Fo, Fum, I smell . . . my feet!" Realizing his mistake, he would try again, always with a mix-matched result. "Fee, Fie, Fo, Fum . . . And the little pig went wee, wee all the way home!" Silly giant!

Miriam and Simon have been enjoying our old home videos from when they were younger. We've found it especially fun to look at the summer of 2000. Simon was just 3, and Miriam was about 10 months old. Simon's wild head of hair looks a lot like Miriam's does now. Miriam's scant hair, still straight, looks a lot like Simon's hair now. It's a funny reversal. It's also fun to watch Simon speaking in some of the same cadence as Miriam does now.

We failed to report in June, with great fanfare, that Miriam has completed potty training. We got rid of the diaper pail. It's really great!

July 16, 2002 "Back to chemo"

Simon continues to recover well from his surgery, although he is often tired and his appetite is still weak. He's lost 4 pounds since the day of his surgery. We keep trying to feed him his favorite stuff, but sometimes he has no interest in food.

He's getting around very well and looks nearly normal if he's outside on his bike or if he's involved in an activity distracts him. His inscisions are all healing under their steri-strips (no stitches). The only spot that still has a bandage and a few stitches is the place where the chest tube left his right side rib area. And he itches! The healing wounds, the adhesives, and sweaty skin , all out of reach on his back, combine to make him pretty crazy!

Nonetheless, on Monday (a mere 12 days after his operation), Simon went back for chemo. He is having his 5th round of topotecan/cytoxan. It's the same story: 5 days, outpatient. With the 5 week hiatus in his chemo treatments for the surgery, Simon's blood counts had all recovered into the normal range. It's a relief to us to see that his body is able to recover, since it hasn't had that chance for many months due to repetitive chemo.

The first week of August will involve multiple tests and scans to prepare for the stem cell transplant process. He is scheduled to go in on August 13, begin chemo on August 14, and receive the transplant about 7 days later. After that, he will be in the period of weathering the transplant and recovering function of his bone marrow. We're expecting this to be a particularly grueling part of his treatment, and we're doing what we can to prepare ourselves to manage it the best way possible.

July 10, 2002 "It's getting better all the time"

After two full days at home, Simon seems to be feeling better. He's still taking Motrin and Tylenol for pain relief, but he's showing more inclination to move about on his own. He's even getting a little straighter, although the inscision on his left upper abdomen makes him hunch forward to avoid pain.

He's still looking for his appetite and seems to be quite a bit thinner than before his surgery. late this afternoon he got excited about eating some popcorn, drinking tonic water, and baking chocolate chocolate chip muffins.

The best sign was when he slipped away from the dinner table on his own and went outside to play. Since he's been begging to be carried most of the time, this was a BIG improvement. He rode his bike and spent about 45 minutes outside.

Let's hope this means he'll have a good day on Thursday and start feeling almost normal again quite soon!

July 8, 2002 "Home!"

Simon rose to the challenge of taking a walk on Sunday evening, and he went the length of the hall and back with Mary and Katherine, a nurse's assistant. He complained, yet his legs propelled him quickly in his effort to get the uncomfortable event over with.

This morning at 7:00 am, the rounding surgeons (all 10 of them) checked in on Simon and asked if he'd been for a walk as directed. We told them about yesterday's journey, and they said that satisfied them. Simon could go.

By late morning we had all the necessary paperwork to bring Simon and the accumulated mounds of stuff home.

Simon has thinned down noticeably over the last 6 days, and he's still looking for his appetite. He continues to take oral pain medication, and he was increasingly mobile all day. This evening, he even walked up the stairs holding hands with Mary. And he was pooped when he collapsed on the bed.

Miriam is weathering a cold with a fever. She's trying to stay far enough away from Simon to keep him well. They seem very glad to see each other, even if they're both somewhat stifled in their behavior at the moment.

July 7, 2002 "One more day in the hospital"

Simon's now disconnected from all tubes and cords and could go home if it werenít for the temperature he spiked during the night. The surgeons made it VERY clear to us this morning that Simon needed to get up more, so that his lungs have more chances to expand fully. Contracted lungs, we learned, have the tendency to cause a fever after an operation.

We have managed to walk around a little bit and even made it to the toilet (another postoperative first). These activities and the oral pain medication heís receiving (Tylenol with codeine and Motrin) tire him out and he is spending more time than yesterday napping.

July 6, 2002 "Recovering"

It's Saturday morning, and Simon is doing pretty well. He's had three nights since his operation. He still has his epidural for pain control, and it seems to be doing a pretty good job. Still, Simon seems quite surprised at how much it hurts to have surgery. He's certainly never had anything like this happen to him before.

He's been on his back in his hospital bed. Yesterday was the first day he sat up for a little while. His main job is to blow soap bubbles. The blowing helps him take deeper breaths and clear the congestion in his chest. He's very resistent to coughing, since it rattles all the sore areas in his back and abdomen. It is very important to get his lungs clear to avoid the risk of pneumonia.

Simon is actively watching videos, spending his time with Winnie the Pooh and the Land Before Time dinosaurs. But he's pretty bored. He was able to move to liquids and solids right away on Thursday because his bowel function returned a mere 10 hours after his operation. His appetite is modest, but he is eating.

Simon in his hospital bed

Friday night we had a scare when the tape holding his epidural catheter next to his spine came loose. He called Mary for help, and we quickly called the nurse. She taped it back down and called the Pain Team to evaluate whether the catheter was dislodged. By the time the anesthesiologist arrived, Simon was sleeping again, so we decided to wait until he complained. He made it fine until morning, so the epidural must be working OK. But it was a chance to see how worrying it is to think of Simon actually feeling his pain without the help of his epidural.

The plan for today is to remove the epidural and transition Simon to oral pain medications (probably tylenol with codeine). If that's not enough, he'll get a PCA device, which enables him to push IV pain medication himself as needed.

We hope it will be a good transition, making him feel free to move about and maybe even visit the playroom. Once his pain is under control off the pumps, he'll be "ready" to go home.

July 3, 2002 "Whew!"

Simon's surgery went well, he looks terrific, and he's resting on the 7th floor of Mott.

The surgery was much lengthier than anticipated (8 hours instead of 3-4), mostly because of non-surgical matters, such as breathing tube placement, etc. that took longer than expected.

The tumor near Simon's left adrenal turned out to be attached to the nerve column, not the adrenal. His adrenal gland, kidney and other organs are all in tact. The tumor was "stuck" to various vessels and muscles, so it took a while to clean things up.

The small tumor on Simon's right lung was "wedged out", leaving the lung in tact.

So, the operation was very successful, and Simon's surgeon is calling it a full ressection. This is excellent news!

Simon is suffering the discomforts of numerous tubes in his body (stomach, chest, urinary catheter, IV fluids), but the tiny epidural tube in his back seems to be working wonders at keeping him unaware of inscision and other post-operative pain.

He's most eager to be allowed to drink something, but that won't probably happen until tomorrow morning. It's hard to stand by with empty hands as he croaks, "I'm thirsty!"

We are so grateful that things have gone so well. He even bypassed the intensive care unit and went straight to the regular cancer patient hall, which is a familiar place for all of us.

Mary, Markus, and Ann (Grann) whiled away the later part of the day with minister Ken Pfifer, whose presence and conversation is truly delightful and comforting. Dr. Rajen Mody joined us for the final hour of waiting, and we all heard the report on the surgery from Dr. James Geiger. Mary, Markus, and Ann had also taken the chance earlier in the surgery to look at the primary tumor. We are really glad to have it OUT of Simon's body!


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