Welcome to our site

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. 11/25/04 - Thanksgiving

Thursday, 11/25/04

HAPPY THANKSGIVING!

I pray you all find many reasons to be thankful this year. We sure have.

I don’t know how many have given up on me. You were all probably wondering if I would ever update the website again. Well, you can assume that no news is good news. We have been busy trying to live a “normal” life around here.

Here are the latest happenings since the end of September:

Les’ appetite has improved and he has gained weight. Praise God!!! However, there is some concern about his growth velocity. I guess the thyroid hormone is one of the factors that affect growth and his tests came back slightly abnormal. We don’t know if it is because of the radiation possibly getting to the glands, or what. We have started him on a low dose of a thyroid medicine in hopes that his growth (height) will speed up a bit. This leads me back to the weight issue. We saw the nutritionist the other day and she was impressed as to how well Les seemed to be doing. However, after I mentioned the thyroid/growth velocity issue, she was hesitant to take Les off his last can of tube feeding a day. If we reduce his calories, it could have a negative effect on his growth. So here’s the compromise we came to; Les could come off the tube feeding until his next check-up in December and at that time if his weight drops, we go back to the tube feeding. If his weight increases, then we’re done with the tube feedings. Please pray that his weight goes up!!!

Our week is still busy with appointments. Les goes to PT and OT once a week here in Murrieta (on different days). How wonderful that it is so close to home. Once a month we go up to Corona for a different PT and OT session. We’ve tried some PT on horseback and Les really loved it. I tried to figure out ways of getting more horse sessions funded by outside sources, but so far have failed in that quest. It’s the only thing that hasn’t gone our way, so I guess it’s not God’s timing right now. We are still attending gymnastics once a week and enjoying that a lot. He’s improving and getting stronger all the time.

On a non-cancer note, Les lost his first tooth!!! It was a wonderful experience for him and now he feels more like a “big kid”.

Les is doing great in school. We’ve finished the first quarter now and I finally think I’m getting the hang of how this whole home school thing works.

Les got to play in the snow for the first time in his life last Sunday (11/21/04). It actually snowed in Murrieta for a couple hours on Sunday morning. We didn’t get snow directly on our house, but we drove up on the hill behind us and found a street that had some snow still on it in the afternoon. Les ate it, threw it, made it into a snowman, and slipped on it. What fun! This was truly a miraculous day, as we don’t get snow at our house (last time it snowed was in the 80’s).

Tue. 9/28/04 - MRI Results

Tuesday, 9/28/04
Les’ MRI is still clear, Praise God!!! Our oncology clinic appointment was uneventful. He’s doing so well that there’s not much to talk about with the doctors. They can’t answer the only questions I have (i.e.: what is the future going to be like?) so the visits are pretty short.

We had Les’ nutrition clinic appointment yesterday and came to the conclusion that we will continue his tube feeding of one can a day. This was based on the fact that he has lost some weight in the last month, but he’s also grown in the last month. Now his height to weight ratio is skewed a bit low and he needs to gain some weight for everyone (including mom) to be comfortable with discontinuing his tube feeding. Our next nutrition appointment is the day before Thanksgiving, so we have a couple months to put some weight on him. I’m praying that his appetite continues to increase and then this task would be much easier. 

Fri. 9/17/04 - Summer

Friday, 9/17/04
OK, I’m back. Sorry to keep you hanging for over a month. We’ve been busy doing “normal” things and there wasn’t much medical information to update.

Current Medical Highlights: Les has his next MRI and Oncology Clinic appt. on Monday 9/20/04. His nutrition appt. is on Monday 9/27/04.

Since July, Les’ appetite has improved and his taste buds are starting to work again. We have cut back on his tube feedings significantly. He was getting 4-6 cans (8oz ea.) of Kindercal each day and now he only gets one.

At first it was difficult to find things to feed him. The nacho chips and cheese dip from Taco Bell along with chocolate whole milk from a local dairy sustained him for a couple weeks. Then he branched out into eating sour cream and onion dip and potato chips. Hot spicy Cheetos were on the list of favorites also. I wasn’t thrilled with all the junk food, but I couldn’t do much about it. Les was having difficulty with the mechanical function of eating. Basically he has had to re-learn how to move food around in his mouth with his tongue. He liked crunchy chips because he could feel them in his mouth (they were hard) and they broke into small pieces and were easier to chew and swallow. He didn’t like bread or anything similar because it got gooey in his mouth and he had a hard time manipulating it. He also liked the strong flavors because his taste buds were still “off” from the chemo.

Progress in the eating department has been extremely slow. So slow that I don’t often notice the improvement unless I compare the present with a week or two ago. It was very discouraging at first because the first couple weeks seemed to have no progress. Then I could start to distinguish a slight change from a couple weeks prior and I became encouraged. Also, other people who aren’t around him as much can notice the improvements better than I can.

Now Les will try a taste of most foods. The volume that he consumes is still small, and the bite size that he takes is tiny (1/8 to 1/4 inch square). Here’s another challenge we encounter that all families can relate to; Les is five, and five year olds have their own ideas of what they will and won’t eat. Needless to say, I’ll be happy when I can cook a meal for the family and know that the whole family will eat it - maybe when Les is 27 :).

Physically, Les is doing great. His progress is still slow, but it is measurable. We were on a large trampoline recently and he was able to jump and get both feet up at the same time. Granted they were barely off the trampoline and I was holding his hands for stability, but it was progress. His walking is getting better as is his strength and coordination. His right hand is still a bit lazy, but when it does pitch in and help it is not shaky.

I took Les back to his gymnastics class today (the one he did when he was 2-4 years old). The teacher is very sweet and she allows Les to attend whenever he can (at no cost to us! YEAH!). We attended the 2 year old class where the mommy’s work with their kids. It was wonderful! Les jumped right into the routine and willingly tried all the skills. There are many challenges for him, but he did much better than I anticipated. He was able to hang and swing from the parallel bar, walk like a polar bear, and roll over a padded cylinder on his tummy (it didn’t seem to bother his g-tube). He did the balance beam and trampoline with mommy firmly grasping his waste, but he did it with a big smile. It was wonderful to get him in a group of kids again and see him trying. He feels comfortable there because the environment, routine and teacher are all familiar from before his surgery. It was kind of funny to have him in that class because he was almost twice as tall as some of the 2 year olds, but they were all welcoming and didn’t seem to mind the bigger kid playing with them.

We did complete the schoolroom/office in time for the first day of school. Of course, there are a few finishing touches that would be nice to add, but everything is functional as it stands.

Home school is a different experience. We are still getting used to our new tasks and trying to figure out if there is a schedule we can create. We still have therapy appointments multiple times a week and so the lessons need to be worked in around those. I love our curriculum and how well it is planned out and presented. Les seems to enjoy most of the lessons, except the ones that he thinks are boring because he thinks he already knows it. I am learning to read Les’ little signs and I’m trying to not let it get boring for him. The next couple weeks we will have San Diego trips to include in our class schedule, so we will have to see how that works.

I’ve attached some pictures from some recent fishing and camping trips.

Thu. 7/29/04 - Vacation

Thursday, 7/29/04
I have lots of great news to update you on. Les’ room is done! His nose is clear! His energy/strength/coordination is improving! He starts swimming lessons tomorrow! He went to day camp! We had a vacation! We’re doing “normal” family stuff!

Immediately after updating the website last time, I ended up taking Les down to San Diego for a “drop-in” doctor visit and blood test because he was acting very “tired and weary” and said he felt dizzy. I thought that possibly his hemoglobin levels were down again. We found out that his hemoglobin levels were higher than mine and he was just worn out after a very busy weekend. What a relief to know that he was fine.

The rest of that week I worked really hard to finish Les’ room so he could sleep in it the night before we left for vacation. I accomplished my goal and he loves his new room. great-grandma Amick painted the cool Rescue Hero wall decorations.

Our one-week vacation in San Diego was a combination family vacation, day camp for Les, and getaway for Jason and I. The weekends were “family time”. Monday thru Friday Les went to Camp Reach for the Sky day camp (sponsored by the American Cancer Society) located in Balboa Park. We all stayed at great-grandma’s house for most of the time, but for two nights Jason and I escaped across the bay to Coronado Island and celebrated our 10-year anniversary at Hotel Del Coronado while the grandmas took Les to and from day camp. It was a wonderful week for everyone and we can’t wait to go on another vacation!

The week after vacation Les had his monthly clinic visit. He checked out fine. His appetite is improving daily and his hair is thickening. His blood tests are coming back normal. Praise God!!!

Grandpa Paul came this past weekend for a short visit. We went to the new Imagination Workshop (Temecula Children’s Museum). Lots of fun! Thanks for coming Grandpa.

I continue to take Les to physical and occupational therapy each week. He’s doing great and I can see improvements already. Les is also starting semi-private swim lessons tomorrow. We’ve been in swimming pools much more frequently lately and I think he’s ready for some formal instruction.

Lately we have been enjoying play dates, visiting with family, household chores and shopping. It’s nice to not have one or two trips to San Diego to work around.

Our next big adventure is Kindergarten. I will be home schooling Les starting in September. Now I need to complete the new schoolroom/office in time for school to start.

Mon. 7/5/04 - Eating!

Monday, 7/5/04
Hope you all had a happy 4th of July. We had a great time in San Diego at Grandma’s house. We stood on her upstairs balcony and could see about 5 different fireworks displays at once. Les said, “This is the best 4th of July ever!” Les also ate his first solid food in months. He ate a few nibbles of peanuts and sampled some of my ice cream and nibbled some piecrust.

Last Friday Les started his venture into the food realm by licking Doritos. Today, he ate some bits of apple, some peach, grapes and crackers with jam on them. It’s exciting to see him be excited about eating again. We’re far from eliminating the feeding tube, but at least we’re moving in the right direction.

Thanks for the prayers. Since my last update, Les has not thrown up at all. His sinus discharge has decrease to about ½ and he’s doing great! I’m looking forward to having a healthy kid again.

Oh, and Les has a band-aid on his head right now from bonking it on the corner of the furniture. Yeah! A normal kid thing!!!

We’re really close to finishing Les’ new bedroom. Saturday we put up the shelves (floor to ceiling on one wall). Today Les and I moved the toys over and tonight Jason and I are going to spray paint the bed a hammered silver color. It should look quite “Rescue Hero”-ish. Our self-imposed goal is to finish by Friday. Wish us luck (and no more trips to Home Depot).

Tue. 6/29/04 - Graduation

Tuesday, 6/29/04
All Les’ tests from last week came back good. His MRI is still clear – Praise God!!!

Last Sunday (6/27/04) we had a small graduation celebration for Les at the Marriot Yacht Club in San Diego. Gammie organized a short ceremony and Les performed magic tricks for us all (with the help of Gammie and Grandma Sue). Les received the t-shirt in the photo that night and I thought it was very appropriate. What a wonderful time to relax with family and friends and know the chemo is behind us.

We wore Les out over the weekend and I took him to the hospital today thinking he may have low hemoglobin counts again because he complained of being “weary and dizzy” yesterday. Silly me, his counts are higher than mine (I know this because they wouldn’t let me give blood last week because my hemoglobin counts were slightly below the limit). I guess it was just a case of running our kid down and expecting him to be able to bounce back quickly.

Les still has his nasty runny nose/congestion issues. He’s been throwing up at least once a day recently. For a while it was about once a week, but the frequency has increased lately and I don’t know why. While we were at the hospital today, I asked if they would test for allergies. They went ahead and did that blood test and also a full endocrine panel. Hopefully after we get those results, it might shed some light on why he’s so congested. Please pray for Les that this will get cleared up.

Also pray for Les’ appetite. After his MRI last Friday, he ate some grape Popsicle, which is the first “flavored” item he’s tried in months. I bought Popsicles today and Les joined us at the dinner table to eat one. He only licked at it a bit and complained that it was too cold. It was a start. I’m hoping we will have more of these “tries” and eventually he will get used to flavors, textures, temperatures, etc. I’d like to get some help from the hospital, but their dieticians quit and they haven’t been replaced. Les is now being referred to the Nutrition Clinic, but it takes about a month for that process to go through. Until then, I’m sort of on my own. Pray for me.

Thu. 6/17/04 - The End?

Thursday, 6/17/04
This week has been GREAT! We have had a week of NO appointments, not even therapy. We have played with friends, worked on projects, relaxed, and really enjoyed ourselves. Last week was Les’ last chemo treatment and next week is his post treatment tests and MRI.

Mon. 5/31/04 - Memorial Day

Monday 5/31/04

A Happy Memorial Day to you.

Les and I survived our last inpatient stay at the hospital last week. We both had a relatively good time. My cousin, Debbie, and grandma came on Tuesday afternoon and stayed till after dinner, and then my cousin came again on Wednesday for lunch. My mom came on Wednesday evening and stayed with Les while my grandma took me out to dinner and a play (we saw South Pacific). On Thursday we were able to get discharged fairly early and then we went to visit my cousin, Matt, at his house. From there we met up with my sister and then my dad came over after we got home. Oh, and I think Gammie came over sometime that evening too. What a wave of support for Les as he approaches the final weeks of treatment.

I finally got the photos developed from our events in May. The first event we attended was called Courageous Kids. It is sponsored by the American Cancer Society and is hosted by Sea World. It was held on Mother’s Day (5/9/04) and they pampered me. They had lunch, a great “goodie bag”, some crafts, games, and a bunch of raffle give-aways. They even did a game of musical chairs with the moms. The news media was there and they happened to get some footage of me falling into a chair and laughing. It was the clip they used for the evening news that night. We were also able to purchase passes to Sea World for the remainder of the year at a huge discount.

The following weekend was the Celebration of Champions (5/17/04). This event is exclusively for the kids from Children’s Hospital who are being treated (or have been treated) for cancer. The event is wonderful. It starts with a relay “race” where each child currently in treatment or recently completed treatment “runs” a 1/8th mile section while carrying a torch of tissue paper and then passes it off to the next runner. Each child runs with a celebrity and a corporate sponsor. This year our celebrity was Trevor Hoffman, a pitcher for the San Diego Padres (#21). He was very popular and we were able to get a couple pictures before he was whisked away. Again the news media was there and they took footage of Trevor with Les and also did an interview with me. They ended up showing Les on the news that night and not me.

Following the Celebration of Champions event, and after a quick nap at grandma’s, we were off to the Padres game. Outfielder, Ryan Klesko (#30) purchased 400 tickets for the kids and families that attended the Celebration of Champions. The kids are invited to go out on the infield during the pre-game activities where they are recognized as champions before the entire stadium. This year the Padres were playing the Cubs and I have a picture of Les and Jason on the field at the same time as Sammy Sosa. They never saw each other, but it happened nonetheless.

The next weekend (5/22/04) Murrieta was holding its Relay for Life, another American Cancer Society event. This is a 24 hour fundraiser that happens in many cities all over the country. We got together with a group of family and walked for a couple of hours.

Because of all the “events” this month, it’s been hard to make much progress on Les’ new bedroom and the schoolroom/office. I hope June slows down a bit so we can finish up those projects and get our house back in order.

Les is doing great so far this cycle. His hair started coming out again a couple weeks ago, so we shaved it off again. It’s now coming in again fuller than before. Hopefully he won’t lose it again. The area around the scar in the back of his head is still bald and I don’t know if it will come back or not. Pray that it does.

Well, enough for now. Thanks still for your prayers and support.

Tue. 5/25/04 - Last Stay!

Tuesday, 5/25/04
We’re here at the hospital for Les’ last inpatient chemo stay. Les has this place wired. He validated the parking when we arrived and then checked himself in at clinic. All this while I was unloading the truck (he was within eyesight and in a safe environment).

Let me clarify that this is not the last chemo Les will receive, just the last time we need to spend the night at the hospital. He will receive his last dose of chemo on June 9, 2004.

Today Les received a cassette/CD of “Teddy Bear’s Bedtime Bible Stories” from the playroom. He wants you to know that he likes it and “it’s mine” (we’re still working on the sharing issues). Also at the playroom was the Home Depot man. He comes in once a month and brings little wood kits for the kids to make. Today Les was making a sailboat. He got started on it and then dismissed me and let me know that he didn’t need me there anymore. I obliged and am now updating the website.

This month of May has been full of events. I’ll wait until I get the photos back and fill in all the details on later updates.

Suffice it to say that all is going well and we are excited to be almost finished!!!

Tue. 5/11/04 - Morro Bay

Tuesday, 5/11/04
Well, it’s been a couple weeks since I updated. Life is GREAT at the Fountain house. Our spirits are up and we are counting the days until Les’ final chemo treatment. We start our last round of chemo the day after Memorial Day, and we’re looking at June 9, 2004 as being his last dose of chemo (outpatient). It’s hard to say what will happen after chemo because every kid is different. I am assuming his appetite will come back, but I don’t know exactly when or how fast. His hair is already coming back (it’s even fuller now than these photos show) except for the lower section on the back of his head where the higher doses of radiation were concentrated (it still might come back, but we just don’t know). His physical muscle control and strength should improve, but I don’t know how quickly. As you can tell, there are still many uncertainties we will have to go through, but at least they are all positive and uplifting uncertainties.

Let me go back and recap a bit of last month. On the weekend of April 24th, we attended Jason’s cousin’s wedding in Morro Bay, Ca. The wedding was at the Inn at Morro Bay overlooking the harbor and Morro Rock. When we checked into our room we were delighted to see the wedding rehearsal just below our balcony on the patio, in fact we decided to watch the wedding from our balcony. We were also delighted to see our own personal hot tub on our balcony (we were not in the hot tub during the wedding!). Les attended all the functions and got to dress up in his “gentleman clothes”. One of the ladies at our table during the reception taught him to dance and he then asked everyone at the table to dance with him. Grandpa Barry was the only one to decline. Les even joined in the toasts by sipping some Martinelli’s sparkling cider. He said he liked it, but the next day he tried some again and he didn’t like it. Talk about finicky.

We delayed the start of Les’ current round of chemo by one week so we could attend this wedding and have him feel his best. It was amazing to see improvements in Les with just one extra week off chemo. I can’t wait to see him at two weeks, seven weeks, four months, etc.

Another nice part about this trip is we were able to see Jason’s dad and my grandparents and aunt who all live in San Luis Obispo. Les was at trooper during the car rides. His portable DVD player came in handy.

Overall, our lives back at home are still pretty busy and relatively stressful. Last week I had to take Les to an appointment everyday of the week. We had two in Corona, two in San Diego and two in Murrieta (we had two appointments on Friday). We still managed to squeeze in a play date with his best friend, but I neglected to do laundry – something had to give. This week we have three appointments, and today I got caught up on all the laundry.

Thanks yet again for all your prayers and support.

Wed. 4/28/04 - One Year!

Wednesday, 4/28/04
One year ago today Les had his brain surgery to remove his tumor. It seems so long ago in a way, yet at the same time it seems like yesterday. Our lives made a dramatic change during that weekend, yet we can all say that God is good.

I'm sitting here in the hospital room and Les is receiving his chemo (our regular two-night stay). He's sitting up watching a video and he's already played in the playroom twice and the schoolroom once today. His best friend from Murrieta also came to visit today with her family and they traded turns riding the tricycle outside on the patio. All that to say that our days are upbeat and busy and we are looking forward to our final treatments in the next couple months.

Thanks yet again for your prayers of support. We couldn't have made it this far without God's healing hand and your helping hands.

Tue. 4/20/04 - Clear MRI

Tuesday, 4/20/04
Results are in – MRI was clear once again!!! Praise God!!!

We are off to Corona this morning for an OT appointment. Life is going to be a bit busier now with appointments in both San Diego and Corona, but it will help Les get his strength and coordination back again, so it’s important.

Last weekend Les spent two nights at Gammie’s house so Jason and I could get away for the weekend. We finally got our weekend get-away after a one-year delay. If you don’t remember, we took Les to the emergency room this time last year (the weekend after Easter) instead of going on a planned get-away. This year we all enjoyed ourselves and Gammie did a great job with Les’ feeding schedule and nighttime routine. Thank-you Gammie!!!

Life is a bit scrambled around here with all the room changes, but I’m excited. I was able to track down some new cabinets for the new schoolroom – for FREE. I am also receiving some donated shelves and bunk bed for Les’ new bedroom. Things are coming together even better than I imagined. I look forward to having everything in its new location and my office contents out of the dining room.

Les goes in for his next round of chemo next week on Tuesday. I probably won’t update again until we return home from his hospital stay. Thanks again for your prayers of support.

The photo is of Snoozy and Les at Snoozy’s clown school graduation. If any of you think Les is a clown at times it’s because both his grandmothers are certified clowns.

Sun. 4/11/04 - Easter

Sunday, 4/11/04
Happy Easter! We had a fun filled weekend with many egg hunts, gatherings and of course, church service. My digital camera was old and now is gone, so I’ll have to get my 35 mm photos developed to put on the web.

I was hoping Les would get through this latest round of chemo without needing a hemoglobin transfusion, but it didn’t work out that way. Friday we ended up staying at the hospital all day waiting for blood and then getting the transfusion. It was a good excuse to go see the grandma’s at dinnertime before heading home.

Les is still doing great. At our last doctor check the doctor said that Les was handling the treatment extraordinarily well. I guess a lot of other kids get their dose reduced as Les has, but they don’t respond as well as Les has. I’m taking that information as an answer to all our prayers. Thank-you, and Praise God!

Les has another MRI scheduled for this week on Wednesday. I’m expecting another clean scan to add to our collection.

On the home front, I finished sewing all the curtains and the furniture is now moved into the new music room. There are still miscellaneous items left in the old music room that need to be thinned out and removed before we can transform it into Les’ new bedroom. It is going to be fun to start that project. The goal is to complete Les’ room and get him moved in by the time his chemo treatment is over.

Thanks again for all your prayers and support. They are obviously working and we are grateful.

Sat. 4/3/04 - No Blood

Saturday 4/3/04 No transfusions this week!!! This means he probably won’t need them at all this round, as we are coming out of the “lowest counts” phase. YEAH! It was funny; Les likes to get transfusions (I don’t know why, but he does, so I’m not going to mess that up). Yesterday (Friday, 4/2) he wanted his blood test results to be low enough for a transfusion and I wanted them to be high so we could just come right on home in time for lunch. We had fun realizing one of us would “win” and one would “lose” and neither of us had any control over the situation. I ended up winning this time, and we made it back into town in time to meet up with daddy for lunch.

This last week Les was a little more tired (napped everyday), but still he’s having a fun time being 5. Grandpa Martin and Gammie both came by this week to spend some time with him and he always gets riled up when he has visitors to play with.

We’re all excited around here because some of our rooms are trading places. The music room is moving to where the office was (the office is now temporarily located in the dining room), the office will move to where Les’ room is and will get the new name of “schoolroom”, and Les will get a new bedroom where the music room was. We hope to complete this entire home decorating project before school starts in August. Les will start kindergarten this year and we have decided to home school him, thus the new “schoolroom”.

Last weekend we put paint on some of the new music room walls and this weekend we hope to cover two of the walls with foam scraps in order to provide a bit of sound dampening from the other bedroom areas. My huge task this week will be to make nine 10’ long curtain panels that will hang in front of the foam and make the walls look nicer. One of the reasons to move the music room was so Jason could feel more comfortable playing his guitar in the evening after Les went to bed and not disturb Les.

The next room to tackle will be Les’ new bedroom. We haven’t come to any final conclusions on the design yet, but Les is voting for a “Rescue Hero” room. We’ll see. It looks like it will be sometime in May before we start that project.

Sat. 3/27/04 - Birthday

Saturday, 3/27/04
Sorry about the delay in updates lately. That “short bout of stomach flu” lasted a lot longer than I was anticipating. I still have a faint lingering cough, but my nose seems to have cleared up. Les also is still struggling with a runny nose. We’ve tried double dose of antibiotics and Sudafed, but none of it has helped. The doctor says it’s probably going to go away on its own – someday. Please pray that “someday” is TODAY, otherwise I will need to purchase stock in Kleenex tissue – we are going through them like crazy.

The big news since the last update is that Les is now 5 years old. He had two birthday parties. On his actual birthday (3/14) he got to go to the local family fun center and ride bumper boats with Gammie, go-carts with Daddy, a small train (by himself), and some spinning teacups with Grandpa Martin. After that we headed over to a favorite pizza parlor that also has a nice little kid friendly arcade. Les opened presents while we ate and then got to go play a bunch of games with Uncle Billy and Grandpa Barry. Mommy and baby cousin Jazmine were also along for the party, but mommy was too tired to participate much and baby Jazmine slept through most the fun. Oh, and he got to help construct a “Bob the Builder” birthday cake, though he didn’t participate in eating it.

The next birthday party was down in San Diego at Great-grandma’s house. 15 of us had gone to the San Diego Zoo earlier in the day and went on a VIP behind the scenes tour. We got to get up close and fed some giraffes and pet a huge camel. We had our own tour bus with a guide and even got to cut in line at the panda exhibit. We concluded our day back at grandma’s with some dinner and cake and presents.

Les wants to let everyone know that he had a good birthday and would like to see you all soon.

Les and I spent two nights in the hospital this last week to start the third to the last round of chemo. The end is in sight! Les was so perky and energetic the whole time even though he had no naps and little sleep each night. He is the delight of everyone he comes in contact with (as are most of the kids down there). They are continuing to give him 50% of the full dose of chemo. I’m so glad. He’s been so much more “alive” these last couple rounds since they started his decreased dose.

Les continues to get a shot of Aranesp each week to help boost his hemoglobin counts, and once a month he gets the PEG G-CSF shot to help boost his white cell count. We are continuing our technique of poking him at night while he’s asleep. It seems to be the least traumatic method and Les never remembers it in the morning.

We are in the process of getting Les back into physical therapy. Hopefully that will start up in the next couple weeks. The good news is we won’t have to drive to San Diego for it (over an hour drive South of our house); the bad news is we will have to drive to Corona (30 minute drive North of our house). For the next couple months we will be a little busier driving to appointments in two different directions, but in the summer when treatment is over we will just have to continue the drive to Corona.

On a more serious note, we just received new information regarding cousin Matt’s condition. His brain tumor is spreading in spite of the chemo. Please check his link for more information and continue to keep him and his family in your prayers.

Thu. 3/11/04 - Splints

Thursday, 3/11/04
Well, no news is good news. Sorry I haven’t updated the website for a month. Life has taken over and the website got pushed aside for a time. We did start to update a couple weeks ago and then our monitor literally burnt something. We were able to switch out the monitor the next day, but the website update momentum was lost. Here’s what we had.

******************************************
Saturday, 2/28/04
Jason and Les are updating the website today. I will interview Les and then I will interview Cillia and put things together. (The Cillia interview never happened).

Les says:

I am doing well and I love riding my tricycle out on the back patio.

Mommy and I went to the hospital Tuesday through Thursday (2/24-2/26) to start my next round of chemo and the treatment went very good. I played a tractor game at the playroom, which gave mommy time to get dinner and lunch. With Great-Grandma’s help, I decorated some triangle flags with sparkles and shapes as a craft project. I made a flag for daddy and Great-Grandma made a flag for mommy. Grandma Sue brought some Bob the Builder movies for me to watch while I was at the hospital. I was visited by a dog that let me pet him a lot. He was fun and really soft.

Last night I got my G-CSF shot and was really brave because I didn’t wake up a bit.

***************************************
Since my last update: Les received his foot splints (see photo), started another treatment cycle (we were able to get the one-dose G-CSF shot this time - YEAH!), had a hemoglobin transfusion, attended some birthday parties, and is currently counting the days to his own birthday on Sunday the 14th. We aren’t planning a big party with lots of friends, because we usually don’t have big parties. But we will have fun with family this weekend and next weekend.

Oh, and the big news is his hair has started to grow again. He has some peach fuzz that gives him a bit of a shadow along his hairline. The back part where the radiation was aimed is still bald, but that still might grow back in time.

You can pray for me. I got sick this week with a short bout of stomach flu, I think. Right now I’m still weak from not eating much yesterday and I still have a yucky raspy cough. Pray also that Les doesn’t get it. I’ve tried to be careful, but I have to interact with him, so there is a chance the bug got passed. Les has been dealing with a runny nose again for the last couple weeks also. You can pray that that would go away too.

Thanks for keeping tabs on us and praying for us. We really do appreciate it.

Sat. 2/14/04 - Valentine's

Saturday, 2/14/04
Happy Valentine’s Day

Les had a great week. Even though we were all dealing with runny noses, Les was a joy to be around. What a difference a change in medicines make.

There was a bit of sadness this week though. Jason’s grandfather died on Monday 2/9/04. His health had been failing him in recent months, so it wasn’t unexpected. The funeral was on Thursday and Jason traveled up to Fresno to attend. We decided Les and I were not healthy enough to make the quick trip. We missed seeing everyone and wished we could have gone.

On a happy note, Les’ counts were really high on Tuesday when we went to clinic and so they said we didn’t have to come back on Friday this week. Yeah!!! A whole week before we go back – we were soooo excited. The G-CSF and Aranesp shots are doing their jobs!

Les’ weight is also up. He’s finally back to where he was before all this started last April (around 41 lbs). His feedings are going much better this round in part because we have been able to keep him from getting constipated, and also we discovered that a dose of Benedryl early in the morning before he wakes up keeps his morning nausea away.

This next week is our week of rest (no chemo) prior to the next round of chemo. On Tuesday Les will have another hearing test, a blood test (finger poke only this time), and he should be getting his foot braces. It will be a busy day.

Thanks again for all your prayers of support. We appreciate them greatly.

Sun. 2/8/04 - Sick

Sunday, 2/8/04
Well, this past week everyone got sick. Jason was the first. He got a cold last weekend and then I came down with it on Wednesday night. Les now has a bit of congestion, but not quite a full-blown cold. I must brag about my dad, Grandpa Martin. He came over on Thursday afternoon and played with Les for the rest of the day and then stayed the night and drove us to and from the hospital on Friday for Les’ appointment – thus allowing me some much-needed rest. Les ended up needing a hemoglobin transfusion, so it was a long visit. Thank you Grandpa Martin.

Overall, this round of treatment has been better than the past ones. Remember, they gave him 50% of the dose for both his chemos. Les seems to have more energy this time around. He is playing more and is keeping Jason and I on our toes, which is difficult when we aren’t feeling well. I guess I’d rather be trying to keep up with him than having him on the couch all day long.

That’s about all for now. I’m exhausted and haven’t done much except sleep for the past couple of days. Oh, Gammie (Jason’s mom) is wonderful too. She took Les for most of the day on Saturday and allowed Jason and I to get some rest.

Thu. 1/29/04 +Details

Thursday, 1/29/04
Here are the details I promised. I’ll start with the most recent information and then share some stories that happened last week.

My sore throat was gone by the time I woke up on Wednesday (1/28/04). Thanks for all the prayers – they must have worked. I’m still feeling fine, though still tired. Jason was wonderful and allowed me to go to bed and stay there all night long last night. He took care of Les’ feeding and medications as well as getting up with him throughout the night. I didn’t get up until after 7am. (Which is sleeping in for me).

Back to the hospital visit. One of the Physical Therapists visited us on Monday to check out Les’ muscle tone, especially in his legs. She explained to me that what the Vincristine chemo does is interrupt the nerve signals from the brain to the muscles. We can attempt to strengthen his muscles as much as we want, but unless his brain tells his muscles to work, most of our efforts will be in vain. (That’s my understanding anyway). What she was able to offer was this – we can keep his muscles stretched out and then when the treatments are over and his brain starts communicating again, then his muscles will be ready to get stronger. If we don’t keep them stretched, they will begin to atrophy; then when treatment is over we would have to work against the atrophy before we could make much progress in the strengthening.

So here’s the plan. We concentrate mostly on the legs right now. We will manually stretch his Achilles tendons by flexing his feet on a daily basis. We are also getting him some braces to wear in his shoes to keep his feet in the neutral (90o) position, but also allow him to flex his feet. This should help his gait considerably.

We went over to get measured for the braces on Wednesday before heading home. It was a fun experience and Les got to pick out a cartoon character that they will put into the plastic that the brace is made out of. We’ll surprise you with a photo when we get them. They should be ready next week and we can pick them up on Friday.

The other “news” recently learned is that Les will have to go back to the 10-dose G-CSF shot plan. The Home Care Pharmacy dropped off his box with the G-CSF and Aranesp before we came home. I didn’t bother opening it because it was in an insulated container and was all taped up (the medicine needs to be refrigerated). When I got home and opened it up I saw 10 syringes of G-CSF and my heart sank. I had checked with someone earlier during our stay to make sure we were still on the one-dose plan, and now I have 10 doses. Well, frantic calls and emails were placed, and today, I learned that the doctor switched Les back to the 10-dose plan because the one-dose was not the best for him, and it was difficult to calculate and administer the proper amount since he was so small, and there was too much waste (I guess it only comes in adult size doses and they throw away 2/3 of it before giving it to Les). Anyway, we are stuck with 10 shots again. Luckily we have found a method that works for now. We wait till Les is asleep and then poke him really fast. He cries just a bit but never really wakes up. The next morning he asks if we gave him the shot, so I guess he doesn’t remember any of it. Please pray that this method continues to work because he will need 50 G-CSF shots before treatment ends (not to mention the weekly Aranesp shots).

Tue. 1/27/04 - Good/Bad

Tuesday, 1/27/04
Good News, Good News, Bad News, Good News, Good News. See, more good than bad. :)

The first Good News was that Les was able to get his MRI very soon after he was admitted to the hospital yesterday (1/26/04). We were back in the room by 2:30pm (last time he didn’t start until 6:00pm).

The second Good News was that because his MRI was so early, they were able to start his chemo on Monday afternoon instead of waiting until Tuesday morning. I was anticipating one day for MRI and then three days for the chemo. By starting the chemo on Monday, we are able to shorten our hospital stay by a whole day (and night).

The Bad News was that I started getting a sore throat last night. I had a long night without much rest.

The third Good News was that my grandma (who lives close by) didn’t have anything scheduled today, so she came and relieved me at the hospital. I was able to go to her house and take a nap as well as take a shower. I’m feeling much better. I spoke to the pharmacist and he suggested a warm salt-water gargle and some Tylenol, so hopefully I’ll get some more rest tonight.

The final Good News is that the MRI results came back and everything is still clear. There was no change from the November scan (which was his first clear scan).

More detailed update when I get home.
Keep scrolling down - I added the details.

Sat. 1/17/04 - Aranesp

Saturday, 1/17/04
This last week Les only had one transfusion. It was for platelets. We are now on our “rest period” with no chemo until the end of the month. Hopefully his counts will recover well.

Les started his Aranesp shots last Monday (these are weekly shots to help his hemoglobin levels recover better). I talked to the homecare nurse and she said she is scheduled to come every Monday until Feb. 2nd to give him the shot. I think after that I’m on my own. It’s kind of a mixed blessing, on one hand she pokes him instead of me; on the other hand, I have to schedule a time for her to show up and that just adds one more appointment to our lives.

Les is starting to really be affected physically by the chemo. I guess the vincristine chemo is mainly responsible. Les has developed what they call a “slappy gait” where he doesn’t control his leg and feet movements smoothly. He is also losing strength in all his limbs and becoming very clumsy and needs help much of the time to climb up from the floor. Now the mommy in me sometimes wonders how much he is playing me so he can get me to carry him or help him up, and how much he really is unable to do some of these things. I usually err on babying him, but I have seen him do things on his own if he really wants to. I share this not to make you depressed, but just to share another area where you can pray for strength for Les and wisdom for me. In all of this we are still in good spirits and taking one day at a time.

Les’ next MRI is scheduled for the 26th of January right before his next round of chemo. Please pray that it is still clear (no tumors).

Have a great week. We plan on getting more and more strength around here since Les doesn’t receive chemo this next week.

Note: I wrote this before Les woke up on Saturday morning. I just wanted you to know that all day Saturday, Les was up and about going in circles and smiling all day. He's still weak, but his spirits were bright.

Sat. 1/10/04 - Low Counts

Saturday, 1/10/04
This past week went fairly well. The home care nurse was able to deliver the G-CSF shot quickly and Les was grateful that there was only one this round instead of 10 days in a row. He was able to select a toy from the “Brave Box” in the playroom as a reward for getting his shot. He chose a miniature Mr. Potato Head that can be a policeman or a fireman. (Les wanted me to share that part).

Les’ counts dropped fast and hard this round (meaning his energy level was low right off the bat instead of a delay of a few days). We went in for our clinic visit on Tuesday (1/6/04) and his hemoglobin was low enough to require a transfusion. The hemoglobin transfusions take 3-4 hours with an additional 1-2 hours just waiting for the blood to show up. Inevitably they conclude just about the time rush hour traffic starts, so we are grateful for grandma’s house. We zip over there and have a relaxing dinner then drive home after the traffic has calmed down. We did this scenario twice this week because Les now has to get his blood tested twice a week - Tuesdays and Fridays. Yesterday’s visit (1/9/04) required Les to get a platelet and hemoglobin transfusion. The platelet transfusion takes about an hour. We saw the doctor yesterday and she said that they would decrease the dose of cytoxin by ½ for the remaining rounds. Hopefully this will decrease his need for so many transfusions. Also, she prescribed Aranesp, another shot similar to the G-CSF, but this one is to help the hemoglobin recover faster. Hopefully between the shots and decreased chemo dose we can go to a clinic visit and come home mid afternoon instead of staying all day.

The doctor also looked at Les’ mouth. This week his gums became very swollen and they think it may be the beginning of mouth sores. The doctor prescribed a mouthwash, but I don’t know if we’ll be able to get Les to use it. He hasn’t really had much in his mouth for months, not to mention trying to get him to not swallow it and spit it out. Please pray that his mouth will just heal back up and not get worse.

On Tuesday’s clinic visit, a visitor came to the Infusion Center (one of the rooms we are in for his transfusions). His name was Shane Walton and he was a 2003 5th round draft pick for the St. Louis Rams. His hometown is San Diego and he was home for surgery then recovering for the rest of the season. He was really nice and sat down and played a Blue’s Clues computer game with Les. We’ve had visits from other people too like Padres players (and mascot), and college basketball players. You never know what’s going to happen during a visit to Children’s.

We did have some nice visits with friends and family this week. Les went to a friend’s house for a couple hours on Wednesday and I was able to meet Jason for a quick lunch and get a couple errands done. That was nice since I didn’t want to expose Les to many public places because of his low immunity level right now. Gammie visited Thursday morning and Aunt Joanna, Cousin Jazmine and Grandpa Martin visited Thursday afternoon, which helped to break up our day at home.

Overall, we are all doing fine – just a bit tired. Jason and I still trade off getting up with Les throughout the night to help him go potty. But other than that we are all in good spirits and counting down the remaining treatment rounds. Thanks for your continued prayers. We appreciate them greatly.

Fri. 1/2/04 - New Year

Friday, 1/2/04
Happy New Year! Les and I spent New Year’s Eve and part of New Year’s Day in the hospital. I found out that the cafeteria doesn’t serve much for breakfast on a holiday. Other than that, the stay was fairly uneventful with no surprises.

Let me catch you up on all that happened last month since my last update. Les had two more transfusions, one for hemoglobin and one for platelets. They went smoothly. His energy level was fairly low for the majority of the month, but he did perk up a bit more around Christmas. Praise God, Christmas came during a “rest-week” when he didn’t receive any chemo. His counts were high enough for me to not be too worried about infections and our schedule was slow enough that I think we all rather enjoyed the opportunity to kick back and relax.

Christmas was wonderful. With extended family and travel plans for others, we stretched our “Christmas” from the weekend prior to, well now – we’re still waiting to deliver and receive at least one more gift. I like to stretch it out this way. It helps to extend the season a bit more. Les received enough to make us need to rearrange the furniture in our front room to make room for the new toys. He really liked Christmas.

Today a home care nurse is coming by to deliver and administer Les’ G-CSF shot. G-CSF is a hormone that helps the bone marrow recover more quickly after chemo. That way, when his counts drop (especially white cells, the infection fighting ones) the duration of time that they are low will be decreased and then they come back up. We are trying something new this round. Instead of me giving Les one shot a day for 10 days in a row, the nurse is going to give him just one shot. This new shot is a formulation that is originally intended for adults, but they are reducing the dose by 1/3 and we hope that it is effective for Les. If his counts don’t recover as anticipated this round, we may need to go back to the other 10-shot regimen for the remaining rounds. Please pray that this “one-shot” will be effective.

That pretty much summarizes it in a nutshell. We’ve been told that the further along you go in the chemo process the longer it takes for the body to recover after each round, so our prayer request would be that Les would be able to recover enough for the treatment rounds to not be delayed. We are still looking at a completion of all the treatment this summer.
Don't use this subscripe to: link
Use the "Follow by Email" box at the top right instead. I can't seem to figure out how to delete this old link.