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Showing posts from May, 2003

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,

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

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

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

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 le

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

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

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 includin

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

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  *********************************************************** 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

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. *********************************************************** 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 importa

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

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

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 lie

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

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

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

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 ar