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Showing posts from June, 2003

Mon. 6/30/03 - Last Week

There are 4 whale in this picture - Really! Monday, 6/30/03 Well, last week I was still tired. I guess that comes with the territory. Last week Les and I went to Balboa Park on Tuesday (free day for some of the museums). We saw the Hall of Champions (sports) Aerospace (planes, space ships) and Automotive (cars, motorcycles) museums. At this age, Les thoroughly enjoyed all of museums and we were only gone about 2 hours. After a late nap, we decided to head over to Sea World and see the night shows over there. We also got to go up in the sky tower at night. It was one of the few clear nights in the past few weeks, so I thought we’d better take advantage of it. Also, the tower has a “tree” of lights coming from it’s point and the lights are colored to represent the American flag. Les loves “United States of America flags” so this was an extra special treat to be able to go up inside of this one. While we were at the top, we could look down into all the areas of Sea World and saw th

Mon. 6/23/03 - 1st OT

Monday 6/23/03 Mondays are turning into a long drawn out appointment day. We start with radiation at UCSD and then go over to Children’s for his weekly clinic visit and blood draw. Then we go across the street to Occupational Therapy. We finish at noon usually, but today we had to back over to Children’s to pick up Les’ MRI scans and take them back over to UCSD. We didn’t get home until 2:30pm – we left the house this morning at 6:30am. Needless to say I needed a nap. Les was fairly cooperative and rested quietly while I slept. I can’t understand how his little body can undergo all this treatment and still not need an afternoon nap. Les had his first official Occupational Therapy appointment today. He got to play in a ball pit, swing on a big green “pickle”, play with Mr. Potato Head. I guess the goal is to improve his fine motor skills and coordination. He seemed to enjoy it OK.

Thu. 6/19/03 - Radiation Simulation

Thursday 6/19/03 This morning was another long radiation appointment. They are preparing for some different treatments for Les and we needed to stay an extra hour. There was a lot more hair loss today. Because we got out of radiation late, I cancelled Les’ Physical Therapy appointment. He still wasn’t awake enough to cooperate very much at 11:00am. Instead, we went to the activity center after his blood draw. Then there were errands to be run and yet another request for Point Loma Seafood. This time the selection was shrimp. Les ate 11 little boiled bay shrimp (the kind in shrimp cocktail) dipping some in the cocktail sauce. The rest of the day was spent at grandma’s resting and getting ready to go home the next day.

Wed. 6/18/03 - Seafood

Wednesday 6/18/03 Les and I drove to San Juan Capistrano to visit with the Fowlers. They are the family that I working for from home prior to Les’ diagnosis. They are wonderful and were the ones responsible for arranging the website creation. I am eternally indebted to them for this wonderful gift. Les and their son, Sammy, played for hours and I had to drag Les away so I could get home in time for my spa manicure/pedicure. Les had me take a detour by Point Loma Seafood on our way to Grandma’s because he was hungry for seafood. At this point I would buy him anything he was willing to eat. He chose crab. We were able to buy one precooked crab leg and a sourdough bread roll. They cracked it for us and Les ate about half of it (I ate the other half) while sitting looking out over all the boats in the harbor. We made it home just in time for me to drop Les off and head over to my cousin’s house. My cousin gave me a coupon for my birthday good for one spa pedicure and we went togethe

Tue. 6/17/03 - SD Zoo

Tuesday 6/17/03 This morning the radiation machine was down and our appointment was 1-1/2 hours late. Les did get an opportunity to actually meet Allison, the little girl who has her appointment after Les. Les noticed her daddy taking some of her hair out. I was able to talk with Les later that night about his hair. I explained that his brain is sort of like the earth (he learned about the different layers of the earth about 6 months ago in preschool). I told him that the radiation needed to get to the middle of his brain, which would be like the inner core of the earth. In order to do that, it needed to go through the other layers. His hair was like the crust of the earth and the radiation would affect each layer it touched. He understands now that his hair cells are being scared away by the radiation just like it is scaring away his cancer cells. When we finally got home, Grandpa Martin was waiting to take us to the San Diego Zoo. We had a great time together. Les sat in his strol

Mon. 6/16/03 - Hair Loss

Papa Barry shaved his head "to be like Les" Monday 6/16/03 Les had radiation first thing in the morning. I noticed that when I was rubbing Les’ head (before he woke from anesthesia) I was getting some hair on me. His hair had begun to fall out. After radiation at UCSD, we went over to Children’s Hospital for his weekly clinic visit. We hadn’t seen this doctor yet and she asked if Les had shown any weaknesses in walking or anything because of his tumor. Obviously Les has improved greatly in that area since she didn’t notice. His coordination and strength are improving rapidly. We also talked to the dietician because Les’ appetite had diminished greatly over the past week. Les had lost one full pound in one week. She had some good suggestions and gave us some samples of liquid meal replacements. She also touched on the fact that if he didn’t eat enough, they would have to surgically implant a “g-tube” into his stomach so that we could put food into him. That was the fir

Sat. 6/14/03 - Zipper

Saturday 6/14/03 We came home yesterday for the first time in two weeks (last weekend Jason traveled to San Diego to visit us).  It’s good to be home.  Our garden has grown and is even showing signs of baby vegetables.  Our corn stalks are almost as tall as me (5’10”).  Amazing since we started with little seeds back in March. Jason’s dad traveled down from San Luis Obispo today for a short visit.  It was good to see him and Les enjoyed his company as always. Well, I’m starting to see the effects of the treatments a little bit more now.  Not much, mind you, but a little. Les’ appetite has diminished greatly. When offered a whole ice cream bar, he only takes a few bites and then is “full”.  Please pray that I can find enough “healthy” foods to feed him that he will actually eat.  He still likes his chicken nuggets, though he only eats about 2 now.  I’ll be talking to the dietician on Monday during our clinic visit and I hope to get some good information from her. Another item to

Tue. 6/10/03 - Update

Tuesday 6/10/03 This was on the home page for a few days. Les is doing great.  He completed his 9th radiation treatment today; 21 more to go.  Radiation will last until mid July.  He is also taking an oral chemotherapy (liquid form) every day.  So far there have been no side effects from either radiation or chemo and we're about 2 weeks into the treatment.  God is answering my prayer in that regard.  Les seems to have enough energy to go through a day without taking a nap (much to my chagrin).  We (Cecillia and Les) are staying at my grandma’s house in Point Loma during the week and Jason is staying at home so he can continue to go to work.  The separation is not very fun for anyone.  The weekends go by all too fast.  I can’t wait until the radiation part of treatment is completed and we can spend more of our time at home.  Thanks again for all your prayers.  They are greatly appreciated during this interesting time in our lives.

Thu. 6/5/03 - Survivor Park

Thursday 6/5/03 Today started “Week 2” of Les’ treatments. There are a total of 53 weeks, so 52 more to go or one more year depending on how you want to look at it. There could be delays along the way depending on overall health and blood counts, but we’re praying for good health and good results so that it will go as quickly as possible. Les had a physical therapy appointment today. He surprised the therapist and me by wanting to do 100 leg presses. We did leg presses last week, but I think he only did about 20. He lays on an inclined board that moves on a track and has a platform placed at 90 degrees to place his feet on. He starts with his legs bent and then straightens them and slides the board up the track. He actually did this 100 times today. He also climbed the stairs twice as far this week as last week and played basketball and kickball. He was doing such a great job that before we knew it, it was time to leave. As a reward for being such a good participant during therapy

Tue. 6/3/03 - Sea World

Tuesday 6/3/03 Everything is going good so far. Les wasn’t excited about taking his chemotherapy medicine this afternoon, but we did get it down. I asked Les what we might be able to do to make it easier next time and he suggested having sugar with it. I called the nurse and she said I could do anything with it I want. I can put it in ice cream; I can put it in grape juice; I can put whipped cream on it; etc. I haven’t told Les all the suggestions yet, that way I can control the process a little better. So now the creativity starts. With Les’ cooperation, I’m positive we can figure something out. We went to Sea World today (Les and I have passes). We saw lots of shows including Shamu and thoroughly enjoyed our afternoon. Les even conned me into buying him an ice cream cone – with the understanding that we wouldn’t have ice cream at grandmas later. He must have remembered because he didn’t ask for anything after dinner. [Les took the photo of Shamu with his own camerz] Les played w