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The content from 2003 to 2010 has been transferred over from our previous web host. So, on occasion, reference will be made to menus and such that no longer exist. The journal entries were priority and the rest wasn't able to be moved. So, enjoy our story. God is still moving and working in our lives.

Monday, June 30, 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 that the baby killer whales were in the observation pool. We headed over there and saw two mommies and two babies swimming around. One of the mommies was really nice and would come right up to the glass and stay there while we “petted” her. She would even follow you when you walked away. Needless to say, we really enjoyed our visit with the whales that night.

Wednesday was a recuperation day. Also, Wednesday we found out that Les’ radiation would be completed a week early. For the remained of the week I kept asking different people why and finally was able to talk to the doctor on Saturday. Long story made really short, Les’ radiation will not stop a week early and we will continue for the full 6 weeks.

The rest of the week was fairly uneventful. We had a quick visit home over the weekend and then back down on Sunday night.

Today was a full morning, but finished up on time this week – YEAH!! After our appointments, Les wanted to head to Target to buy his new Buzz Lightyear tennis shoes. He’s been saving his “account” for the last 4 weeks in order to be able to purchase these shoes. I give him $4/wk (since he’s 4 years old) for filling in his chart. His chart has all his medications and appointments that we do each day. It’s the least I can do to make up for all he’s going through. Anyway, we had an extra special surprise when we realized that the shoes were on sale this week and he only had to spend $12 instead of $16 to purchase them. Now he has money left over!!!

This week will be shortened because of the 4th of July holiday so, only 4 treatments this week. Next week will be his last week of radiation and, I believe 4 treatments there also ending on Thursday. Next week is also day camp!

Camp Reach for the Sky is sponsored by the American Cancer Society (free for us). For Les’ age group they offer a 6-day day camp here at Balboa Park. They will have doctors and nurses on staff as well as many volunteers. From 9am – 3pm Les will be having the time of his life – I hope. Please pray that this turns into a really great experience for him. I’m looking forward to some time to myself for some R&R as well. It should be a good week for transitioning out of radiation treatments and into our new phase.

Monday, June 23, 2003

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.

Thursday, June 19, 2003

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.

Wednesday, June 18, 2003

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 together. We followed it up with dinner and shopping. Not exactly the way I would have envisioned spending my 9th anniversary, but it was better than staying at Grandma’s by myself.

Tuesday, June 17, 2003

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 stroller most of the time to save his energy. We saw the new orangutan exhibit and rode the sky ride twice. The polar bear was even playing and I took 20 photos of him. Diving under water, turning somersaults under water, playing with a ball, walking in front of a beautiful waterfall, jumping into the water, etc. I felt like a professional photographer with a very cooperative subject. Grandpa Martin was with Les while I sat for 20 minutes just soaking in the experience. You have to realize that most of the time you visit the polar bears you either can’t see them at all or they are sleeping way off in a corner and all you see is a lump of fur. We also walked through the reptile house and saw some really cool reptiles that were actually moving around.

To finish off the night we attended the monthly family support group with Great Grandma and Grandma Sue. The topic was perfect, nutrition. I was able to get some more good suggestions from other parents and Les was able to play, play play. He likes going to the meetings.

Monday, June 16, 2003

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 first I’d heard about that possibility and I wasn’t too thrilled with the idea.

By the time we completed our Dr. check I was hungry (Les didn’t care about eating), so we went downstairs to McDonalds. This time Les had a hamburger and I had the chicken nuggets. We traded a bite so he still had a taste of nuggets. He didn’t eat too much at all, but he drank quite a bit of milk. The activity center (with the really cool toys) would open back up soon after our lunch, so we waited around and played in the hospital waiting rooms (which all have toys in them). In one room, we found ourselves alone with the doors shut. I took this opportunity to explain to Les the importance of eating and the options of what could happen if he doesn’t eat enough food. Regarding the feeding tube his comment was, “That’s not right!” I agreed and let him know that if would put the food down his esophagus and into his tummy we wouldn’t need to do the feeding tube. I didn’t dwell too long on this topic. Just long enough to make sure he understood the concept. The activity room soon opened and we were back to playing with the remote control tractors for another half hour.

Later that evening I went on a bike ride with my cousin, Debbie. It was overcast and cool, but she set a pace that quickly warmed me up. She stayed around till after I got Les into bed and then we went out for a quick dinner. It was nice to be out of the house and with adult company :). That was the night I drank caffeine and stayed up till 1am in the morning (really-really late when bedtime for me is usually 9:30pm). I still had to wake up at 5:15am too, because it is not an option to be late to Les’ radiation appointment.

Saturday, June 14, 2003

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 keep in prayer is the healing of Les’ “zipper” on the back of his head (incision site from the brain surgery). Last week, Les picked a large portion of the scab off and this week it started to show signs of moisture around it.  On Wed. night he touched it again and it started to bleed a very little bit.  We went in to the neurosurgeon’s office on Thursday morning and they were mildly concerned about it.  There wasn’t any sign of infection which is good, however, to be on the safe side, they prescribed 10 days of antibiotic (3 times a day).  Les was given a “talking to” about “not touching it ever again until he was a big boy as big as daddy J.”  Les and I are teaming up on this now.  His job is to not touch it and my job is to keep it clean.  Depending on our surroundings, I may put a gauze pad on it and gently wrap a bandage around his head like a headband to keep it on or just put one of his crocheted hats over it.  Today, I left it open because he’s being really good about not touching it and we were inside most of the day.  I also put a thin layer of triple antibiotic ointment on it.  The radiation treatments are not helping the healing process any as they are working contrary to the healing.  Please pray that this does not get infected and heals in spite of the radiation.

Thanks again for your prayers.  Because of them, I’m able to handle these bumps in the road calmly.  Keep it up, please :).

Tuesday, June 10, 2003

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.

Thursday, June 5, 2003

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, you guessed it – Chicken Nuggets at McDonald’s. Thank You Granny and Pappy Doran for the new batch of Ronald McDonald money :). I’m making it last by only buying the nuggets and then taking them home and making my own lunch while Les savors each and every bite. He actually ate all 6 nuggets. He didn’t eat much the rest of the day, so I think it filled him up pretty good.

This afternoon, after Les’ “quiet rest time” (no sleeping was done to consider it a nap), I was able to go for a long awaited bike ride. I didn’t go too far, but I must admit, it was beautiful. I took my bike down to the San Diego Harbor, which is only about a 4 minute drive from grandma’s. I rode along the harbor toward downtown San Diego and stopped when I got to the Star of India (a tall mast ship that is a museum most of the time but can actually still sail). My trip was a little shy of 6 miles round trip and took me about 35 minutes. It’s a bummer that I have to live away from home for 6 weeks, but I couldn’t think of a nicer place to have to be. I’m truly blessed. Besides, I’m escaping the heat back at home.

During my ride I stopped for a while at a sculpture park along the way. It is called the Cancer Survivors Park (located on Harbor Drive across the street from the airport). The life size bronze sculptures show a father carrying his child, an elderly couple and a young adult entering the “maze” that represents the treatment phase. The maze looks like a 3D square shaped spiral that is a bit kinked. On the other end of the maze are a mom and a dad holding a little boys hands and they are swinging him up into the air. They symbolize the cured patient. I can’t wait for our treatment to end and Les to be cancer free, and then I want us to go down to the park and swing Les up in the air next to the sculpture and have someone take our picture. Besides the sculptures, there were a bunch of “positive thinking” sayings and a short description of cancer and the importance of making a decision to fight it with all you have in you. Since Jason and I are Les’ advocates through this, I took those sayings to heart. There were also some benches that were bright and colorful and had donation plaques next to them. One plaque was sponsored in part by someone who overcame prostate, bladder and lung cancer (I think those were the three types). There was a quote from him that went “Cancer Smancer”. I liked that.

Tuesday, June 3, 2003

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 with great-grandma this afternoon and they created objects with his K’NEX set that he received as a gift while in the hospital. Les is doing great at following the pattern and putting the pieces together by himself (another great right/left hand activity J). He has currently accomplished a “level 1” pattern and a “level 3” pattern (with minor assistance in reading the pattern).

When I tucked Les into bed tonight I asked him if he wanted to read me a book. He said that it didn’t make sense for him to read to me when he was the one going to bed. He decided he could though after I promised that I would still read to him the number of stories that I normally do. We invite the grandmas in to hear his reading. He read two books to us tonight, which delighted the grandmas. We have the “BOB” books that are very simple stories, even more basic than the classic Dick and Jane stories. I cover up the picture so he is forced to sound out the words on his own and not guess at what it says. Then after he reads the page, I uncover the picture. He sounded out MAT, SAM, SAT, ON, CAT, & AND. You should have seen great-grandma’s face when she saw him really reading.

I must say again how blessed we are to have such a wonderful group of people supporting us. I’m sure most of you don’t know, but our church has arranged to have meals delivered to our home on Friday and Saturday nights when Les and I are there. This is a wonderful blessing to me. It’s one less thing to have to do while I’m at home for such a short time. THANK YOU!!! It also helps Jason out during the week because there are usually some leftovers for him to eat on other nights.

Your prayer support is still amazingly appreciated! Please don’t stop! I feel such a peace about this whole process. Even during the trying times like giving Les his medicine this afternoon, I was able to stay strong; talk him through it and allow him to help me to find a way to make it easier in the future. I know that God was with me sitting on the kitchen floor and holding me and comforting me, just like I was holding Les and comforting him.

God is Awesome!!!