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Showing posts from 2004

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

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 ha

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,

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 n

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/co

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 pampe

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’l

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 m

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 to

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

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

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 g

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

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

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

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 anyw

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 p

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

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

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