| UPDATES |
| July 15, 2001--Just got back from Oklahoma a few days ago. Chance was in pretty good spirits while we were visiting. On July 6, his parents decided to stop the chemo. He had a spinal tap, which I still haven't heard anything about. But, they decided to stop chemo and let him live his life the way a child should. They did decide to have local radiation of his testicles, since so far that is the only place the leukemia cells have been found. All spinal taps so far have been clean. From July 20-25th, they will be visiting Disney through the help of Make a Wish and Give Kids the World. Chance will be meeting Buzz Lightyear, and possibly Blues Clues too. They will be staying in a villa provided by Give Kids the World. All the characters will be going to see Chance. Since we just got back from Disney, I showed the boys my pictures that I took, and both are excited to go. They both want to go to "infinity and beyond," eat at Pizza Planet, and ride the Buzz Lightyear ride at the Magic Kingdom. It was one of my favorite rides. Disposable cameras will be provided to them, along with film developing....and a video tape will be made of their entire visit. This is one vacation that all will cherish forever. The radiation will begin after they return from Disney. Now, when I saw Chance, he was still puffy from the predisone. Seems that everytime I see him he looks different. No hair, except for a small dark hairline that they did leave. Now, I did see the pictures from the hospital in OKC where he fell out of bed. And, honestly....I didn't know he looked so bad. These pictures were horrible! He looked like someone had beaten him up (in my opinion.) I was truly upset just looking at the pictures! During our short visit with the boys, we just sat back and watched the boys, took several pictures, and swam, swam, swam! Chance got a Buzz Lightyear chemo hat from Disney that I brought back for him. A little big as usual, but he loved it (and so did Tyler :) I took pictures that will be posted on the site, but the didn't turn out very well. So I'm in the middle of trying to repair them a little. Not the best quality, but it is all I have. Hopefully will get better ones next month when I visit again. |
 |
| August 10, 2001--Chance is back from Disney. Right after he got home, he began radiation treatments on his testicles in Tulsa. He has to go through 15 days...at this time, only having about a week left to go. His trip to Disney went great! He got to meet Buzz Lightyear a few times, went to the ocean, took a helicopter ride, went on some rides, and loved the Star Tours and Buzz Lightyear ride. Tyler's favorite ride was the Rock-N-Rollercoaster featuring Aerosmith. Not only did they go to Disney, they also went to Universal Studios to try and see Blues Clues. She was out of state. Hopefully I will be able to get some pictures up of their trip in the near future. I'll see about doing that during the beginning of September when I get back from visiting him. So, now that they are back into their regular routine as a cancer patient....they have yet again, a hard decision to make. Dr. K wants to put him back on a low maintenance chemotherapy, to hopefully keep him in remission. They've never gone the route of radiation. They know that chemo alone will not work. So, I believe Dr. K's plans are to try and keep him into remission, do full-body radiation at transplant time. Adam and Janet are not sure they want to do that again. Plus all the "what-ifs" of the future. Things like the slowing of his brain with the full body radiation. Their original decision was to stop chemo. But, with him being on a low maintenance treatment, he should not get as sick as he was this last time. He recently had a physical, and he is in perfect health at the time. |
| August 15, 2001--Talked to Adam yesterday. Chance's last radiation treatment is on Monday, Aug. 20th. He said the place where Chance's line HAD been was infected. So far no antibiotics were killing the infection, so there was a possibility they might admit soon. They've decided at this point to go ahead and continue treatment. He will get another bone marrow aspirate and spinal tap soon. Thereafter, Dr. K wants to start him on a low maintenance chemo program. The talk right now is not so much to get him to transplant time, but to allow his body to continue to recoup from the last one. It was mentioned of keeping him on the maintenance program for 1-3 years....and basically try for as long as possible before another transplant. By then, some of the rules may change in the medical field...to where a protocol transplant is mandatory (therefore the state can't fight as hard the second time around). They found out that Dr. Mustafa in Oklahoma City is leaving, and going to Duke to do research there. Maybe by the time Chance gets to have another transplant, he will be able to stay right in Tulsa for it...or St. Jude's by that time. At this rate, they aren't ruling out experimental medicines. I hope I got this all right. There was a lot of information conveyed to me on the phone. Other than the infection, Chance is doing really good. He is considered in remission at this point. Also, Tyler started 1st grade this week. I asked, and he said he was excited and looking forward to it. I'm looking forward to hopefully seeing them in a couple of weeks when I go back home to visit. Not sure what Chance's agenda will be at that time....it's a day-by-day schedule in the life of a cancer child. |
| August 19, 2001--Chance is going in for surgery on Monday, August 20th. He was admitted into the hospital over the weekend. Where his line was, is still infected. So, he's having surgery on Monday to see if they can find the root cause. It is believed that maybe a part of the cup that holds the port in place was accidentally left in there. They might just go ahead and do the bone marrow aspirate and spinal tap while he's under. Other than that, he's in great spirits. I talked to him yesterday and he says he wants to go to Granny and BoPop's lake and go fishing. :) He received a really neat personalized book from one of his ChemoAngels. Thank you! The family really liked it a lot! The LINKS page got rearranged a little. I added a few more sites that have helped support Chance. Hopefully some new pictures will be added soon. Adam said he'd try and email me some or get them to me on disk when I see him in a week. |
