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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.

Thu. 5/29/03 - Home

Thursday 5/29/03
I’m so sorry for not updating the “Latest News” for over a week. We went home last Thursday after an early PT appointment, made a quick sack lunch and arrived at preschool just in time for “circle” and then outside for sprinkler and wading-pool fun. Les’ outdoor activities will be limited this summer due to his treatments, so I’m glad he got at least one hour of "fun in the sun" (and water). The rest of the holiday weekend was spent resting, fixing cars, and catching up on the latest goings on.

Long story, but please pray for our vehicles! We currently own three of them and for the past couple weeks we have had one or more out of commission for various reasons. Thank you to all of our friends who have offered the use of their “extra” cars during this time. It is greatly appreciated!! It looks like now we have two up and running, but the third may need some more attention. Pray that this is easily diagnosed and fixed in a timely manner.

Tuesday, the 27th, was Les’ radiation oncology simulation. This is where they “set him up” on the table the way he will be for his treatments and then take a bunch of x-rays, CT’s, MRI’s, measurements, etc. Then they download all the information and send it to the radiation physicists who crunch all the numbers and come up with the right angles to aim the radiation. Les had anesthesia during this appointment, so he didn’t know it lasted for a little over 3 hours. At the end of the appointment, they told us to come back today (Thursday, 5/29/03) to begin treatments. That didn’t give me much time to go back home and prepare for our next 6 weeks. I had figured it would take longer to do the calculations and the treatments would start on Monday – Nope. No such luck. There went my week of “time” to do “stuff”.

While at home, we sneaked in one more visit to preschool. Les even showed his friends the bandage on his chest. To me that was a good sign of him accepting his new experience. Les spent the rest of the day at Gammie’s so that I could finish packing and preparing to be gone. At least it was only for two nights this time. Next week will start the five night stays.

Today was Les’ first radiation treatment. It seemed to go well. He woke up from the anesthesia just fine. We got to Grandma’s with just enough time to change clothes, eat breakfast and then leave for a PT appt.

The PT was fun. Les rode a tricycle down the hallways, got to ride a cool little floor scooter thing, walked the balance beam, and was shown the “secret stairs” (the fire-escape stairwell). He even did 30 leg presses in the big kid’s gym.

When we got home from PT, Les experienced his first “side effect” from radiation. He had a headache. I called the nurse and got permission to give him Tylenol, but it took about 30 minutes for it to start working. During the wait Les just lay in bed trying to take a nap. He was finally able to take a 3-hour nap. When he woke up he was feeling much better. In fact, it’s 9:30pm when I write this and he’s still awake. I need to get him up at 6:25am tomorrow morning, so I hope he gets to sleep soon.

I also gave Les his first dose of chemotherapy today. It is in an oral suspension format (grape flavored), and I give it to him once a day for 21 days. Then we get a week rest before we start another 21 days, and then another rest before another 21 days, and so on. I’ll never look at a 10-day antibiotic schedule with disgust again! There were no noticeable side effects from the chemo as yet.

Les’ appetite seems to be normal. His eating hours are a little different since he can’t have breakfast till after his radiation appointments, but I’m flexible on that.

I’m not sure what else to say now. It’s been a very busy month. Thanks for all your prayers for Les and for me and Jason. We really do feel them and don’t know how we would get through this without them.

Tonight I asked Les what he would want to tell people on the website (tonight is the first time I actually explained to him that he has a website and that I write letters on it). He told me that he wanted everyone to know about his shakiness and his bandage. So I’ll tell you. Les is still slightly shaky in his right arm/hand and right leg. He also has a bandage on the left side of his chest over his port throughout the week while he’s undergoing the radiation treatments. This is because they “accessed” his port earlier in the week in order to give him his anesthesia and it can remain “accessed” until Friday. The bandages keep the area clean and also keep the IV “pigtail” from flopping around. Some of the tape is positioned in such a way that it pulls the skin a bit when he tries to lift his left arm, so that doesn’t please him much. We mentioned this to the nurse, and she is going to see if they can position it differently next week. Oh, and the best part in my view is that they will remove all the bandages while he is still sleeping and he won’t feel a thing!!! We’ll see how that works tomorrow.

Wed. 5/21/03 - Develop. Eval.

Wednesday 5/21/03
Today was Les’ Developmental Evaluation. I handicapped him pretty good prior to the test. Not intentionally, but it just happened that the two prior nights he went to bed way past his normal bedtime and then both mornings had to be awakened earlier than normal. On top of that, he didn’t choose to eat breakfast this morning, so he was a bit hungry by 9:00am.

Warning: Mommy brag moment :). Les’ overall score was not “average”, not “above average”, not even “high above average”, but “SUPERIOR”. This wasn’t news to us, of course, but it is nice to have it documented by an unbiased third party. Just think of what the results would have been if he were well fed and well rested (not to mention if he hadn’t had brain surgery three weeks ago too). OK, I’ll stop. But it does a mother good to brag occasionally.

The tests were interesting to watch. There was a series of 6 “table games” they played. Each one was answering questions by either matching patterns using blocks or pictures, pointing to pictures to answer questions or just verbalizing answers to strictly auditory questions (no pictures at all). I was sitting behind Les, so he couldn’t see my reactions at all. I was amazed at some of the answers that Les got right. I was even challenged a bit on the more difficult problems.

It’s interesting how they get them to continue to try to answer the questions. After every answer that Les gave, the evaluator praised him for such a great answer (even if it was wrong). They continued to press forward with more difficult questions/problems until Les missed about 3 in a row. Then that particular test was complete and they moved on.

Here’s my recollection of the tests (my apologies to Rene, our evaluator, if I messed up the descriptions). I added the comments regarding Les’ need to verbalize or not, because Rene told me later that she noticed a slight delay when he was required to verbalize the answer as opposed to being able to point to the answer. He still verbalized often during all the tests, it was just on the mandatory verbalization tests that the delay was noticed.

Test 1: Using colored blocks (solid red and white and then ½ red and ½ white combination with a diagonal line down two sides), Les had to match the pattern made by the evaluator. This could be accomplished without verbalizations from Les.

Test 2: Using pictures, Les had to choose from a selection of 3 to 5 choices the best picture to complete the pattern. Les was able to answer in a non-verbal way by pointing, if he wanted to.

Test 3: Les was given a series of verbal questions (no pictures) and had to answer (verbally or by pointing if he wanted to). Examples were: “Where is your nose?” “Where is your knee?” “What is up in the sky that keeps us warm?” etc.

Test 4: Les was shown two groups of pictures and he had to choose one picture from each group that went together. At the beginning there were two pictures in each group, and then after awhile it went to three pictures in each group. Examples of matches in the beginning were a dog and a cat, and then it progressed to a skateboard and a tricycle, and finally up to a toaster and the sun (or something like that – I guess they both warm things). Les didn’t have to talk during this one if he didn’t want to.

Test 5: Les was asked to just talk about topics. This was the most difficult for Les for two reasons I think. One, he had been testing for about an hour by this time and was pretty tired of it all. Two, there weren’t necessarily “right answers”. What are you supposed to say when asked, “Tell me about a bicycle.”? Do they want a description of what it looks like? Do they want to know that it can be ridden and where? Anyway, if he thinks like his parents, then we can understand why this was the most difficult test. Oh, by the way, he still scored above average on this one :).

Test 6: Les was given some verbal riddles with clues (no pictures). He had to say what the riddle was referring to. This one impressed me the most. I wish I could remember more exactly some examples, but one of the more difficult ones that he got correct was something to the affect of "it has a front. it has a back; it can be long. it can be short; it can be read. it can be said." The answer was a “book”.

I must add that Les acted like a normal 4 year old during the test period. The toys he saw up on the shelf distracted him, so we took some breaks to play with those, eat a snack, take a drink, etc. At one point (beginning of test 5) we even left the office, got in the car and drove to the beach. A walk near the ocean with the sound of waves crashing nearby can rejuvenate even a 4 year old. We were only gone about 30 minutes, but it was enough to get us through the last two tests successfully.

I took Les to McDonald’s for more chicken nuggets after our long appointment (over 3 hours, minus the beach break). I know McDonald’s isn’t the most nutritious choice, but it makes him happy and I value that right now. The rest of our day was spent at Grandma’s playing computer games and board games and just hanging out.

Tonight’s our last night at Grandma’s this week. We have our Physical Therapy evaluation tomorrow at 8:00am (another early start) and then we get to go home J. We’ll be home for 4 whole nights before we come back on Memorial Day to stay the night so we can get to a 7:15am appointment for his radiation simulation. Les will need anesthesia for that and so with the early start time he won’t be affected as much by the fasting. That is also why our radiation treatments will be so early in the morning on account of the anesthesia/fasting requirements.

Well, this turned into another long entry. I’m sorry, but I’m writing this so that in the future when I look back on this experience, I’ll remember what happened. Hopefully, it also answers many of your questions.

Tue. 5/20/03 - 1st Clinic

Tuesday 5/20/03
Our first appointment of the day was a Hem/Onc clinic visit at 9:00am, but we had to drive from home, so we left at 7:15am. I should have told them that we had a 10:00am appointment across the street so they could have juggled us better, but I’m still learning the ropes. Needless to say, we had to cancel our 10:00 appointment (the Physical Therapy evaluation) at the last minute and reschedule for Thursday morning at 8:00am. I’m glad I’m a morning person. At least this time we will be driving from Grandma’s house and can leave at 7:30am. But that means one more night away from home this week.

The oncologist was very nice. We met a new one today. There are 10 of them and they all rotate through the different responsibilities in the Hem/Onc unit. So far we have met five. He outlined a little more about the upcoming treatment and ways to handle possible side effects, like nausea, etc. After the appointment he went to write up the prescriptions and I promptly checked out (mentally and physically) and left for the next appointment – forgetting to wait for the prescriptions. At least I’m there often enough right now to be able to pick them up another day.

We made it in plenty of time for our Occupational Therapy appointment. This went rather well. Basically, we just need to continue to get Les to do things that require both hands working together (that way he can’t choose to use one instead of the other). He is right handed, but he has chosen to use his left hand predominantly lately because of the shakiness in his right hand. His control is coming back, but he needs to choose to use the right hand. She had lots of suggestions, and the computer game that Les loves is a great thing – I just won’t tell Les that he’s doing therapy when he’s helping Buzz Lightyear stun the robots with his laser.

We had a nice afternoon hanging out and then an errand to Target to get new bath toys. Les informed Grandma Sue the other night that she needed new bath toys. He’s played with the existing toys all his life. Luckily we had a return to make and a gift card, so new bath toys were easy to obtain.

Tonight we went to our first “support group” meeting. It’s called Families Supporting Families and is for everyone in the Hem/Onc unit. There were toys and crafts for Les to play with in a separate area from where the adults were meeting. Les had a great time! I invited my mom and grandma to go with me since they will be going through the majority of this with us. Jason was not able to attend this time, but maybe another time. Tonight’s topic was “Your Spiritual Health” and was very comforting. It’s good to see that everyone has a different approach toward dealing with this type of news. Many, if not most, expressed that it’s only with God’s strength that they get through it. Amen to that!!! I met another couple that has a son with Medulloblastoma and also a daughter that is a survivor of cancer. I can’t imagine going through this with two kids. My network expands daily. God is good to provide the people when we need them.

Mon. 5/19/03 - Neuro

Monday 5/19/03
Aunt Joanna (my sister) and Jazmine picked us up at 9:30am for a quick trip to one appointment and then back home. At least that was the plan. Through a chain of events out of our control we didn’t return home until 4:00pm; with company coming for dinner (they brought the dinner) at 6:00pm and a cluttered dining room table to contend with. Exhaustion had to wait. Oh, and did I mention Les had a board game all set up on the floor waiting for a partner to take the other marker?

It’s starting to hit me a little more between the eyes that my life has changed and will never quite be the same. It’s not unmanageable, yet, but my priorities had better be in order, or else everyone suffers (Les most of all). The board game was lots of fun and the clutter, well; it was swooshed off behind closed doors in the office just in time.

Oh, and our appointment went wonderfully. We saw our neurosurgeon for our 3 week follow-up and he was very pleased with Les’ progress. We don’t have to see him again for 4 more months.

Sun. 5/18/03 - Bandages

Sunday 5/18/03
Jason and I decide to take Les’ bandages off first thing after breakfast so we wouldn’t have to deal with it later in the day. You have to understand the challenge in this because Les hates tape and the bandage on his back was about 3 inches tall and 8 inches long and the one on his chest was about 5 inches tall and 4 inches wide. We tried to distract him with a Veggie Tales video, but we still needed to lightly restrain him in order to get through it. I’m on a mission now for no-hurt tape and better adhesive removers. We had some adhesive remover packets from the hospital, but ran out during the second bandage. Ingenuity kicked in and fingernail polish remover was our next best idea. It seemed to work better than nothing.

We were an hour late for second service at church but we went anyway. It was nice to see our friends after service and touch base with them. The rest of the afternoon was restful. Someone brought us dinner tonight and that was a blessing.

That leads me to right now. I’m about ready to fall asleep and I realize that I shouldn’t try to recap an entire week in one night again. I’ll try to do it more frequently in the future so I’m not so overwhelmed by the task and also you will get information a little more quickly.

Next week we have our initial evaluation with outpatient Occupational Therapy and Physical Therapy, a clinic visit to see an oncologist, a follow-up with the neurosurgeon, a developmental evaluation (psych. test) and a simulation at the radiation oncology dept. (not scheduled yet so I don’t know what day). I’ll try to keep the schedule updated on the home page.

Sat. 5/17/03 - Carnival

Celebration of Champions Relay Team
Celebration of Champions - Sponsors and Family
Padres Field
First Major League Game
Our Champion


Saturday 5/17/03
Celebration of Champions! This is an event sponsored by the Children’s Hospital Auxiliary. It’s a wonderful time for the children and their families from the Hem/Onc department. It’s also the largest fundraiser of the year. Last year corporations donated about $400,000.

The first event of the day is a relay race. The first lap is done by a group of bereaved parents each holding a white balloon in honor of their child. Then each child who is currently in treatment runs a section of the track carrying a pretend torch to the next child as a relay. The final lap is run by a group of the long-term survivors. This is a great opportunity to see reasons to be hopeful.

Gammie and Papa Barry brought Jason and the hot rod stroller with them and met Grandma Sue, Les and I at the park. Grandpa Martin also joined us. I’m not sure what Les was more excited about seeing, his daddy or his hot rod.

Each participant is assigned a corporate sponsor and a celebrity sponsor. Our corporate sponsor was Cubic Corporation and they sent two representatives to spend the day with us. We loved getting to know Lijuan and her husband, Phil, and also Pat. They ran the relay with us and just hung out the rest of the day. I think Lijuan really liked to push Les in his hot rod, because she was always volunteering. Thank you both for all your attention and thanks to your company for their support of the Hem/Onc unit. Or celebrity sponsor was Larry Himmel of channel 8 news in San Diego. This was a special treat for Grandpa Martin, Grandma Sue and I because we remember watching Larry’s segments when we first moved down to Fallbrook back in 1987. He was always one of our favorite reporters. Gammie, Papa Barry and Jason were not familiar with him because they have always lived in the Los Angeles broadcast area and never watched San Diego news. Examples of other celebrity sponsors were other local TV and radio personalities, Padres players, Chargers Players, San Diego Spirit Soccer players, Olympians, Pro Racers, and Pro Skateboarders. Oh, and Ronald McDonald himself was there! Les was impressed.

Subway sandwiches provided lunch and then there were a dozen or more booths set up with all sorts of crafts and activities for the kids (and adults) to do and the band Rockola entertained everyone. It was free for the champions and their families. What a great time!

Later that evening, we were invited to the Padres game. Ryan Klesko personally bought 300 tickets for the champions and their families. Also the champions were invited to participate in the pre-game show by going on to the field and lining the first and third base lines. Here they were honored in front of the whole stadium and stayed there until the conclusion of the national anthem. Jason was allowed to accompany Les because Les was so young. Later, we ate hot dogs and bought a Padres batting helmet to add to the “Lids for Les” collection.

Les’ San Diego relatives also came to the game and we enjoyed going over to visit with them. We left before the game was over (the Padres lost to the Atlanta Braves 12-2) and headed home. It was a long day, but well worth the effort. We were able to make contact with another family whose 3 year old daughter has the same diagnosis as Les and also lives in Murrieta. We’ll have to follow up with them in the near future.

Fri. 5/16/03 - Radiation Oncology

Friday 5/16/03
10:00 am appointment at UCSD Medical Center – Hillcrest with the Radiation Oncologist. This waiting room wasn’t as geared to kids as the ones at Children’s Hospital. There was one toy for him to play with and it seemed to hold his attention rather well. It was a circular maze that was mounted in the center on a wall. There was a small red disk similar to a checker that could move around the maze by gravity when Les turned it. There wasn’t a start of finish, just the fun of watching it go around all the different paths.

We were able to talk to the Case Managing Nurse and also the Radiation Oncologist. I didn’t learn much new information from what I read in my book. I did get some good news though. I found that they could access Les’ port on Monday and leave the needle and IV hookups in all week. This will make life much more simple during our appointments because Les will need anesthesia every day for his radiation treatments.

Our next appointment was with anesthesia pre-op. Because of asking so many questions during the previous appointment, we were late for this appointment. That meant we had to go have lunch at the cafeteria and come back later. We finally got through the appointment and went back to the truck to go to Grandma’s. I noticed a bunch of fluid from our car when we walked up, so after a long talk with Jason we finally risked driving the truck to a service station. They did a complimentary check of our radiator and then off to the auto parts store to buy a new radiator cap.

When we finally got back to Grandma’s it was three hours later than I had expected. I was exhausted and took a nap. Les stayed awake and watched some videos with grandma. Later that night I packed things up to get ready for our big fun day on Saturday.

Thu. 5/15/03 - Easy Tests

Thursday 5/15/03
This was an overall “easy” day of appointments, however, because of Les’ surgery the day before, there was the challenge of moving him around without hurting him. We worked out a system getting him into the stroller and away we went.

Our first appointment was a hearing test. They had a great way of working with children. Instead of raising your hand when you heard a sound, they had him pick up a large wooden peg and put it in the hole. They made it into a game and he did quite well. He didn’t even have to get out of his stroller at all during this appointment.

Our second (and last) appointment was a pulmonary test. Again, they had it geared to kids. No blowing in a tube to make a ball move. Les got to play a computer game by blowing the three little pigs’ houses down. He did great and we were done!

The rest of the day was spent hanging out at Grandma’s and resting.

Wed. 5/14/03 - Surgery

Wednesday 5/14/03
We showed up on time – 7:20am – for Les’ check-in. All went well, except Les didn’t want to change into the hospital pajamas. They were accommodating and allowed him to wear his clothes until he went under anesthesia. Then they changed them for him while he was sleeping. Les surgery was for a port placement and while he was sleeping, the nurse practitioner came over from Hem/Onc and performed the bone marrow aspirate and spinal tap. Les was in the OR for about an hour and 45 minutes.

His new port is in his left upper chest area. It is a small round metal cup with a plastic membrane on top and a catheter that leads to a main vein that goes directly to his heart. It is under the skin and will be accessed by poking a special needle into it. Les will get ELMA cream to put on the port prior to the poke so he won’t feel anything. At the end of the needle is an IV hook-up. From this port they will be able to take blood samples, give anesthesia and also medicines including chemotherapy.

When Les went to bed tonight (Sunday 5-18) he showed me his bump on his chest. I told him that was where his port was and that because he had it he wouldn’t need to get IV’s in his hands anymore. He went to bed with a huge smile on his face!!!

Les went through the surgery well. He does great under anesthesia and coming out of it. I was right in the recovery room when he woke up and gave him his blue blanket. After they determined he was stable, they moved him to a second recovery room that had a TV and snacks. Les downed two Popsicles and some crackers. When the nurse came to remove his IV from his hand, Les was not happy. You see Les really doesn’t like the tape to be removed. This is as bad as having the needle pokes for him. Well we persuaded Les to eat one more Popsicle and have a race with the nurse to see who would be done first. This worked fairly well and the nurse was skilled at tape removal so the process was rather painless. And anyway, there were three flavors of Popsicles and Les was able to try them all. They even let mommy have one :).

After we left the surgery center it was downstairs to McDonalds for more chicken nuggets. Les was still under the heavy medications, so the activity didn’t bother him. We sat in front of the “ball machine” while we ate. The “ball machine” is one of those that have many different tracks for small balls to follow and depending on which track they go down there are different elements that they encounter. Some activate the lever for gonging a chime. Some go down a long spiral. Some fly through a loop and land in a basket, etc. When they get to the bottom (about 6 feet) they get in line to go up an elevator that takes them back to the top to start all over again. It’s fascinating to watch for children and adults.

When we got to Grandma’s I tucked Les and Grandma in for a nap and went to the store for Tylenol. I wasn’t thinking to pack the stuff we had from home, so I had to get some new stuff. Anyway, it was nice to escape the house to shop by myself for an hour or so. Someone had given us a gift card to Target and it went to good use during that trip.

Les was pretty sore on both his bottom (from the bone marrow aspirate) and his chest. He finally found a comfortable position to sleep in thanks to advice from Aunt Joanna who had recently had a C-Section and was familiar with pain on the front and back of your body.

After Les was in bed, I went to bed and read the chapter about radiation therapy in preparation for our consultation on Friday with the Radiation Oncologist. I don’t recommend it as a bedtime story, but it was the only chance I had to do my homework prior to our appointment on Friday.

Tue. 5/13/03 - Return

Tuesday 5/13/03
Tuesday morning I awoke to reality and struggled to face it. Jason was wonderful. We stayed in bed crying and praying until the last possible moment. Sorry to Jason’s work if he was late that day, but I really needed him. I was able to compose myself and prepare for our trip to San Diego. The truck was loaded up for the week stay at Grandma’s house and the house was left “as is” for Jason to navigate through while he stayed at home.

Besides facing the reality of dealing with Les’ disease, Tuesday was difficult, because I knew they would need a blood sample from Les. Les is terrified of needles, as are most children (and some adults). I didn’t know how Les would take it, and I really didn’t want to subject him to that yet again. It’s so hard to weigh my motherly protectiveness from the “little” things like the needles against the overall protectiveness of saving his life by allowing them to poke him.

Children’s Hospital is wonderful. They have a staff of Child Life Specialists whose only job is to play with kids and help them to adjust to this new experience. I called Debi, one of the Hem/Onc Child Life Specialists on Monday asking if we could come in before our appointment on Tuesday and “play” with her a bit. She was most helpful. She brought in a lot of medical stuff and we played. We had a basin with about a ½ inch of water in it and some syringes and IV tubing. Les loves playing in water and quickly learned how to shoot the water out of the syringe straight up in the air to make a fun fountain. Sometimes he didn’t keep it at a perfect 90degree angle and Debi seemed to be right in the line of fire, which thrilled Les to pieces. Debi went to check on our appointment and came back with the wonderful news that Les only needed a finger poke. Debi stayed with us for most of our visit that day. She brought bubbles and a mini pinwheel for Les to blow on during the blood test. Nobody cried, not even me!

After the blood test and vitals, we were given a pager to notify us when the doctor was ready to see us. We went back over to the activity center and checked out a toy to take with us.

The doctor’s visit was easy. He just observed Les and asked how he was doing with his recovery. Short, sweet and to the point.

Back to the activity center where we gave our toy back and one of the volunteers played with Les on a mini pool table while I made some calls regarding future appointments. They made ramps out of the pool cues and rolled the balls toward the holes. They crashed the balls together and had a great time. Les really didn’t want to leave the hospital, which I guess is a good thing in the long run, but makes mommy frustrated sometimes. I lured him away with the promise of chicken nuggets at McDonalds and away we went.

Grandma Sue met us at a park on Harbor Blvd. for lunch. We brought our chicken nuggets and had ourselves a picnic. The weather was overcast and cool, but our spirits were up. Les even bragged about not crying during the blood test. After lunch, it was home to Grandma’s.

Just a note of clarification: My Grandma Amick (Les’ great-grandma) and My mom (Les’ Grandma Sue) live in the same house.

Les and I went grocery shopping for our favorite foods to stock in Grandma’s refrigerator. Les was a great helper and walked much of the time while in the store. After dinner, Grandma Sue gave him a bath and put him to bed. We read a special story to Les about a little girl who got a “port” (which is what Les was going to get the next day). Debi had given it to us for just this purpose.

I called home for messages and found out that Les’ surgery the next day had been moved up and we were to arrive at 7:20am instead of 8:00am. This meant that Les would not be able to have food or drink in the morning. Les was still awake when I went in to check on him and he said he was hungry. So, out of bed he came and we had breakfast “in the middle of the night” (at 8:45pm).

Mon. 5/12/03 - Week of May 12th

Week of May 12th
Get comfortable; this is a long one; about 6 pages worth. I’m not going to do it like this again, but I wrote it all at one time, so you should probably read it all at one time. Please note the last paragraph is a cry for prayer for my cousin who is 28 years old and battling cancer as well. -Note: I did break it down for this new website format 

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I just realized that I never really mentioned in this update how Les was doing through all of this. He's doing great today. His personality is the same as it always has been. He's saying his big words and sentences, playing board games and computer games, and trying to negotiate his way out of bedtime. He doesn't even mind going to the hospital because I try to schedule enough time so that we can enjoy the toys in the activity room. Physically, Les is still shaky on his right side. I'd say it's back to where it was prior to the surgery (they warned us it would bet worse before it got better). Grandpa Martin came to the house last Monday (5/12) and they played outside on the playground with Les' friend, Elizabeth. Les climbed the ladder, went down the slide and swung on the swings. I'm looking forward to him starting the physical and occupational therapy next week to speed his progress along and give us specific exercises and games to play. Please don't visualize him as you see him in the photos on the website. He's back to normal and doesn't even have much of a scar from the surgery. I'm going to try to get some recent photos posted soon, however, I'm not in control of that portion of the website, so don't hold your breath. There is one photo of him holding his baby cousin, Jazmine, on the home page and that's a pretty good representation of what he looks like now.

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I know everyone is eagerly awaiting this update. I must say I’m a little more hard pressed to sit down and do it. This last week was not one of my favorites weeks. I didn’t realize going back down to the hospital would be such a trial. Last weekend it was fun to be home, do chores, visit with friends and relatives, and pretty much ignore reality.

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I know how powerful prayer has been in our life over the past few weeks and we really appreciate it. I’d like to ask that you also pray for my cousin, Matt, as he is currently battling cancer as well. His is much more critical than Les’ is at this point and he needs immediate attention. He and his wife are traveling to Houston, TX this week for a consultation at MD Anderson. Please pray that the doctors there will take his case and can help him and that the insurance company will grant the referrals. Also pray for strength in their family as they too are facing a difficult experience.

Much love to you all.
Cecillia, Jason and Les

Wed. 5/7/03 - New Hat

Wednesday 5/7/03
Everyone slept in his or her own bed last night J. After breakfast and a quick bath, Les and Cillia went to visit the preschool. All his friends were happy to see him back. Les participated in circle time and did some “jobs”. Then it was then time to accompany Cillia to the grocery store for much needed milk.

The rest of the day was spent settling back into their home. Jason stayed home to make sure everyone would be OK before he goes back to work.

Aunt Joanna brought baby Jazmine (8 weeks old) over to visit. Oh, she also brought lunch J. Jazmine had been a little sick while Les was in the hospital, so they were not able to visit. She is healthy now. The cousins seemed to enjoy seeing each other. Grandpa Martin stopped by a little later and joined in the visit.

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Thank you all for your prayers and support. Now that Les is home, the website will probably only be updated on a weekly basis, or when important events are coming up or have happened.

We enjoy reading the guestbook. Thanks for all your messages.


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Les has many appointments scheduled for next week.

Tuesday (5/13/03) – 11:00am: Lab work and physical prior to Wednesday’s surgery – Pray that the needle sticks don’t hurt that much and that Les will be brave.

Wednesday (5/14/03) – 10:00am: minor surgery to implant a Port-a-Cath, perform a Lumbar Puncture (Spinal Tap) and Bone Marrow Aspiration all done under anesthesia – Pray that there are no complications and that recovery will be quick.

Thursday (5/15/03) – 10:30am: Hearing Test – Pray that it is easy and that Les will cooperate, especially after the two previous days of yucky stuff.

Les is also supposed to have two days of Physical Therapy next week, though the appointments haven't been arranged yet. Please pray that they fit into the busy schedule.

Tue. 5/6/03 - Going Home

McDonald's Chicken Nuggets
Tuesday 5/6/03
6:00 am - Cillia woke Les up for an early breakfast because he would not be able to eat after 7am. He was scheduled to receive anesthesia during his bone scan later in the day and needed to fast 6 hours prior to the scan. Cillia went to the cafeteria and they actually had biscuits! Not as good as Grandpa Barry’s, but biscuits just the same. Breakfast was finished at 6:59am.

8:00 am - A technician rolled a portable echocardiogram machine into Les’ room and took ultrasound pictures of Les’ heart. It went pretty quick and Les didn’t miss much of his TV program. The tests are all part of Les’ base line evaluation. The oncologists want to know where he is when the therapy begins to see what, if any, changes happen during therapy.

9:00 am - Daddy comes to the room after staying the night at Grandma’s.

10:00 am – A nurse took Les (mommy and daddy too) up to Radiology to have a special infusion to prepare Les’ body for the bone scan.

10:30 am – The activity center is open for playtime. Les has become a mean air hockey player. It’s great for him to get some eye/hand coordination in. He uses both his right and left hands. While Jason and Les were playing Cillia took the opportunity to take some things to Grandma’s that would be staying in San Diego, pick up the laundry that was left at Grandma’s and also take a much-needed shower.

12:15 pm – Cillia returns to Les’ room to find Les taking a nap and Pastor Jeff Pierce visiting with Jason. Jeff’s visit was encouraging and it was also timely as Jason had Jeff transport his guitar back to Murrieta.

12:45 pm – The nuclear medical technician wanted Les to show up early for the bone scan in order to try the scan without anesthesia. Les did great so the anesthesiologist was turned away. Yeah! That meant when Les was finished, he could get right up and go about his business of eating lunch!

1:30 pm – Jason helped Les change into some “real clothes” and then off to McDonalds for some chicken nuggets.

2:30 pm – Friends showed up to help pack and haul things home to Murrieta. Many gifts, belongings, and paraphernalia have accumulated over the past 12 days.

3:00 pm – The final procedure that Les had to endure was the removal of his IV. Not a happy story, but if you asked him, he would tell you that he was “really brave”. Ha Ha.

4:?? – Cillia and Jason finally go over the discharge forms with the nurse.

5:00 pm – Rush Hour traffic is now in full swing so a detour to Grandma's for dinner & dessert.

9:00 pm –HOME!!! What a long day!

Mon. 5/5/03 - Eat All Day

Activity Center - Toys
Monday 5/5/03
Les started his day by eating 12 oz. of yogurt before his breakfast was delivered to his room. He then proceeded to eat all of his pancakes, syrup, and milk. When Jason arrived at 9 am, Les was still asking for more yogurt.

The Occupational Therapist played the “Cootie” game with Les, putting the legs and antennae on the ‘cooties’ was good practice for hand-eye coordination. He then went to the gym for some physical therapy, where he walked, stacked, climbed stairs, popped soap bubbles, cried, kicked a ball, and cried some more. Les was observed by a doctor to evaluate his progress and determine how close he was to being discharged.

Back in Les’ room, Jason and Les took a nap until the Playroom opened up. Jason and Les went to the Playroom and enjoyed some computer playtime, discussed the blast deflectors on a toy aircraft carrier, and played a low-speed game of air hockey. Les won at air hockey and showed good hand-eye coordination.

Les was a voracious eater all day. He ate almost constantly from noon until bedtime. Lunch, snacks, dessert, pre-dinner salmon and sweet potatoes, dinner, yogurt, and he was making requests for dessert as he was getting into his pajamas. The medications have apparently increased his appetite.

Tuesday will present a new challenge to Jason and Cecillia. Les has to stop eating at 7 am for an early afternoon bone-scan, for which he will be under general anesthesia. A bone scan is performed by injecting a small amount of radioactive marker into an IV. Three hours later the patient is placed through a scanner and the radioactive marker will be concentrated in any region where there is high bone turnover. This is the first of a battery of tests that he will undergo prior to starting his treatment.

After a day of eating so much food, Jason and Cillia will have their hands full trying to distract and entertain Les. This might be the most challenging feat yet.

There is a really good chance that Les will be discharged tomorrow after his bone scan. The website will be updated as soon as it is official.

Sun. 5/4/03 - Birthday Thanks

Birthday Thanks 5/4/03

A note from Cecillia on her birthday:

Thank you all for your warm wishes on my birthday. I apologize for the “form letter” approach, but it makes the most sense right now.

I really did have a wonderful birthday in spite of the circumstances. I had my family around me as well as a few friends. I had a few gifts and a made to order meal. I also had many smiles from Les. What more can you ask for?

Your prayers are truly being felt. I was given a verse recently that fits so well with my attitude and outlook. I’d like to share it with you.

May the God of hope fill you with all joy and peace, as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

You may question how I feel hope, joy and peace in a time like this. My only answer is that I serve the powerful God that is bigger than the smallest cancer cells. He’s bigger than a hectic schedule. He’s bigger than the uncertainty that lies ahead. No matter what lies ahead for me, I will always know that my Lord cares for me and will help me to be OK. Please know that He is there to care for you and to help you be OK too.

Love,
Cecillia

Sun. 5/4/03 - Bed

Sunday 5/4/03

Happy 31st Birthday to Cecillia!

Les was physically doing better today, but emotionally he was a little down. Cillia was able to cuddle with him when she arrived this morning. Les seemed to like that. The nurses were kind enough to offer a private room, so the packing and moving began again. This is the now the 6th room they have been in. Since Les was cuddling, and it was Cillia’s birthday, both Les and Cillia got to ride in the bed from the old room to the new room. What a treat for mommy!!!

The new room is a little smaller and does not have a shower in it like the old room did, but it does have a refrigerator, two TV’s and no room mate. The old room had a back door that opened to a courtyard with a playground structure in it. The new room also opens to a courtyard, but this one has a large train to play in as well as some smaller playground ride-on bouncy things.

After settling into the new room, a special birthday lunch was delivered by Cillia’s friends from work. Les even went outside after being coaxed with chocolate cake. He did a pretty good job of eating it with his right hand, though the birds will love to come after him and clean up a little. Les also walked much better today holding just one hand at times.

Grandma Sue goes back to work tomorrow, so Cillia is staying with Les tonight. Jason is at Grandma’s house and will join them in the morning.

Les is expecting to meet with the Physical Therapist and Occupational Therapist on Monday. Les’ discharge will be based on their evaluations. Best guess so far is Tuesday May 6th.

Thanks again for all your prayers. They are working!!!

Sat. 5/3/03 - Laptop

Saturday 5/3/03
Jason and Cillia didn’t get back to the hospital until almost lunchtime. There was much updating on the website that needed to be done at Grandma’s house.

Grandma Sue and Grandpa Martin were with Les in the morning. They reported that Les walked even better than the day before and he ate his oatmeal by himself with his right hand. Some of the spoonfuls hit his cheeks, neck, and forehead, but the majority of them went into his mouth. He also went to the Activity Room and played computer games.

Les’ personality is coming back strong. He’s starting to say his special little sayings in funny voices again and he’s even sprinkling a few smiles into the conversation. He thought it was funny that Grandma was staying with him while Mommy and Daddy stayed at Grandma’s.

Les took a good long nap with Cillia next to him on the bed. He seemed to like her close proximity.

The Fountain’s had a quiet family dinner in the hospital cafeteria. Les rode in his wheelchair and they carried his dinner tray with them as they navigated the halls and elevators to the eatery. Les enjoys the freedom to roam around the hospital. He only spends short periods of time attached to the IV tree, which gives them long periods of time for exploring.

On the way back to the room after dinner, Jason wanted to check out the hospital chapel. It happened to be just around the corner from Les’ room. They decided it would be a good time to have a family worship service and Jason went to the room to get his guitar. When they were ready to start, Jason asked Les what song he would like to sing first. Les replied, “Great is Your Mercy Lord.”

Jason began playing the song and watched as both Cillia and Les started clapping to the beat. As Jason started singing the song, he looked at Les and saw a grin spread across his face as he began worshipping. His voice could be heard over the guitar, Cillia, and Jason especially, during those times when Jason “forgot the words”. Les’ attention span is very short right now and three songs were all he was up for.

When they got back to the room it was time for Les to get cleaned up a bit. The particular type of IV he has does not allow him to shower, but the surgeon cleared him on getting his “owie” wet. The hospital provided some waterless shampoo and baby wipes sufficed for the rest. After the “bath” it was time for bed. Grandma Sue came again to stay the night so Jason and Cillia could rest at Grandma’s. Les was looking forward to having Grandma Sue sleep with him in his bed again.

Fri. 5/2/03 - Pancakes

Friday 5/2/03
Les got settled into his new room around 9pm last night. Jason stayed the night with him and neither of them slept much. Les’ internal clock has been off since the surgery and he has been waking up in the wee hours of the morning. Last night before bedtime he was told he could have pancakes for breakfast, so the entire night he kept asking when his pancakes were going to come.

Pancakes finally came at about the same time the Occupational Therapist came. Les was able to tear himself away from the pancakes long enough to explore the gigantic ball of silly putty she brought in. She has “hidden” objects inside the silly putty and he needed to “dig” them out with his hands. It was a great idea to get him interested in using both hands again.

Soon after breakfast, Les and Jason went over to the Activity Center where a special guest was performing. The musician brought tons of percussion instruments to entertain the kids. Les thought it was a little too loud so they didn’t stay long.

The Physical Therapist came by and took Les to the gym. Les was tested on his ability to navigate while being in a bed. They had him roll on his sides and the sit up so his legs dangled from the edge of the bed. They also had him walk with assistance. He’s being fairly cooperative through all this. While at the gym, he was fitted with a wonderful wheelchair with tons of adjustments. Les spent the rest of the day sitting in his new chair and going for a ride around Children’s hospital with mom and dad.

The tumor was affecting the muscle control of the right side of Les’ body. The surgeon said to expect the symptoms to be worse after surgery for a while because that area of the brain would be aggravated and swollen as a result of the surgery. When the brain “heals” the control should come back. This could take a couple weeks to a couple months or more to happen.

Les chooses to use his left hand most often, however, Cillia brought him an ICEE from the McDonalds downstairs for dessert after dinner and he automatically reached (OK, grabbed) it from Cillia’s hand using his left hand. That left his right hand to operated the spoon, which he did amazingly well. He was still very shaky and Cillia had to change his pajamas when he was done, but eating the ICEE was great reward for his efforts.

Ever since Gammie saw him on Wednesday afternoon, Les has repeatedly told us that he wants to go to Gammie’s house and spend two nights and eat Papa Barry’s biscuits. This had been the plan last Friday night before we switched gears and brought him to the ER. As soon as everyone is back home and able to, Les will be redeeming his rain check for a stay at Gammie’s.

Tonight, Grandma Sue showed up to sit with him, allowing Jason and Cillia to go to Grandma’s for some much needed rest.

Thu. 5/1/03 - Eating

Thursday 5/1/03
Last night Les was put on his side in order to start moving his body around more. The nurse and Cillia helped him do it the first couple times and then Les surprised Cillia by rolling over with just the help from the nurse while Cillia was sleeping.

Les is waiting for the Speech and Occupational therapists to come in this morning to evaluate his neck muscles. He can’t wait to be able to eat again and drink juice and milk.

Watching videos is a favorite way of passing the time. The daily schedule revolves around how many episodes of certain programs we watch before the next “thing” happens.

Jason went to Grandma’s to sleep last night and will be in later. Cillia plans on sleeping at Grandma’s tonight.

One of the support team from the Hem/Onc (pronounced Heem/Ock and meaning Hematology/Oncology) ward came by yesterday and invited Cillia and Jason to participate in a “Daymaker” sponsored by AVEDA at the Ronald McDonald House. There are local beauticians, make-up artists and massage therapists volunteer their time. Cillia is looking forward to participating and have had friends and relatives offer to sit with Les while she is gone.

The blessings that have come in are unbelievable. Thanks to everyone who is involved in the Fountain’s lives right now.

Hooray! Les has been cleared to eat “mechanical softs” and enjoyed some diced ham, macaroni & cheese, peaches, milk, and graham cracker for lunch.

He has enjoyed spending some time in a well-padded wagon being rolled around the ward and over to the playroom. They have all kinds of games, toys, and painting projects.

Les is being moved tonight from the IMU (intermediate critical care) to the Ortho/Rehab unit. They won’t have to monitor him as often over there and they have many more activities available to keep him entertained.
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