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

Wednesday, December 10, 2003

Wed. 12/10/03 - Christmas

Wednesday, 12/10/03
Yesterday Les had a clinic visit that was supposed to be just a blood test and his outpatient chemo dose of vincristine, however, his hemoglobin counts were down, so we stayed for a blood transfusion. There were no complications and today he’s up and around just like normal. The last couple days I could tell his counts were dropping because his energy level was low and his “crankiness factor” was high. I’m learning to read the signs.

I’m sorry I haven’t updated in a few weeks. Our Thanksgiving weekend was great! Les had energy and was playing with the cousins at grandma’s house – oh, and he had high blood counts, so I wasn’t as worried about germs that day. The rest of the weekend was spent catching up on household projects and chores. The last couple weeks have been pretty good also. Last week Les and I were inpatient at the hospital to start his next round of chemo. Except for not getting much sleep, everything went fairly well. He did much better at home this time and didn’t need any pain meds. – PRAISE GOD!!! It seems like he really isn’t experiencing any of the same yucky side effects as last time. I count this as an answer to prayer. Thanks for all your contributions in that department.

On a different note, we’ve been approached twice in the last week and a half from two different friends who have had a possible cancer strike their family. I say possible, because they are still in the diagnosis process. Please pray with us that it is NOT cancer and that the tumors can be removed. I must admit that I have felt inadequate in my responses to them. I know that I’ve been down the road before them, but I still feel like there are so many things out there that I don’t have a grip on yet. Please pray with us that our family can be used to bless these other families – even in our inadequacies.

I look at the calendar and see Christmas approaching rapidly. I believe I will probably wait until after the New Year to write another update – unless something important comes up. FYI: Les and I are scheduled to be inpatient again at the end of the month. We will more than likely spend New Year’s Eve in the hospital.

I pray that each of you has a blessed Christmas. May you always remember the real reason for the season is to celebrate the birth of our savior Jesus Christ. Without this one act of God, I don’t know if I could sit here and be at peace today.

Sunday, November 23, 2003

Sun. 11/23/03 - Jason

Sunday, 11/23/03 (From Jason’s perspective)
Les’ energy level has been much higher this week. He has been laughing, playing, telling jokes, and keeping Cillia and I on our toes. We think a lot of it has to do with his return to ‘regularity’, (see last entry) plus he seems to have kicked the cough that had lingered for about 10 weeks so he’s keeping his food down really well right now.

Cillia and I are getting into a pretty good groove on the medications now. Every 4 hours starting at 6am we have anywhere from 1 to 5 medications to administer depending on the hour and the day of the week. Cillia loves to organize, so she took the basic spreadsheet that I created and added color codes and some nice formatting touches that help us to read it at 6 am.

Les and Cillia went to clinic on Tuesday for a blood test, doctor check, and a dose of Vincristine. His blood counts were measurable this week and he was feeling much better, so they administered the chemo, which he seems to have tolerated pretty well.

I had an opportunity today to address the congregation at our home church and give them our praise report on the tumors being gone. We feel blessed and encouraged to have so many people praying for us. Thank you for your ongoing prayers on our behalf.

Saturday, November 15, 2003

Sat. 11/15/03 - Sleep :)

Saturday, 11/15/03
Les had a platelet and hemoglobin transfusion yesterday. The doctor also gave him some powerful laxative meds. Les’ G-tube site is also infected again, so he’s on antibiotic for that along with a prescription antibiotic ointment.

Good news – Les went poopy in the middle of the night! The great news is that daddy was the one to get up with him and I was able to sleep :). It must have done the trick because it’s 7:00am right now and I just woke up and Les and Jason are still sleeping – we haven’t slept this late for almost two weeks. Hopefully we will be able to control Les’ future bouts with chemo induced constipation a little better now that we know what to look for and now that we have the right medicines.

We now have so many different medicines to give Les at different times a day that I had to make up a chart. It’s pretty overwhelming, but if we just take it 4 hours at a time, it’s not that bad.

Since Les did not receive his chemo last Tuesday based on his low blood counts, I asked the doctor if it was a delay in the treatment schedule or if we were still on track and that dose would be skipped altogether. Her answer was that the dose will be skipped and we are still on track. Yeah!!!

Please continue to keep us in your prayers. We are grateful to receive them.

Wednesday, November 12, 2003

Wed. 11/12/03 - Sleep?

Wednesday, 11/12/03
Well, we’ve been on a roller coaster. Seems like Les hasn’t tolerated the latest chemo treatments very well after all. We had a clinic visit yesterday that should NOT have included a doctor exam, but I called on Monday and changed that based on our difficulties last weekend. We did see the doctor and she was able to enlighten me a little bit on what is going on.

Seems the cyclophosphamide (or cytoxin) attacks the bone marrow, which is what creates the blood. His blood counts yesterday were the lowest they have ever been. His hemoglobin (red cells) count was close to transfusion levels as was his platelet count (he’s never had platelet problems before). Also, his white count was only 0.2. They couldn’t even determine an ANC for him because they could only find 13 white cells in the blood sample. Needless to say, Les has absolutely no ability to fight off any infections right now.

We go back on Friday (11/14) for another blood test and doctor check. If his hemoglobin and platelets dropped anymore, then he will get transfusions of both of those.

Because of his low counts, they did not give him the dose of vincristine that was scheduled. This was great news to me, because this medicine really hit Les hard also. It causes Les to be achy all over – all the time. It also causes localized joint and muscle pain. At one point last Friday he was complaining about his tongue hurting and also his knee hurting. After many phone calls to the hospital, he ended up taking a dose of Tylenol III (w/ codeine) and also some vicadin. The intense pain has subsided and we seem to be able to control the body aches with round the clock regular strength Tylenol. They will probably give it to him next week if his counts have recovered by then.

Oh, and nausea and constipation have come into play also. We have him on an anti-nausea medicine to help keep that under control. We are trying different meds to try to get the constipation under control – hasn’t worked yet.

There is some good news in all this. After a discussion with a doctor while we were in the hospital last week, we started giving Les Sudafed twice a day in hopes of it clearing out his sinuses (the antibiotic the week prior did not work). I had tried Sudafed when Les first started dealing with this, but it didn’t seem to do any good. The doctor convinced me to try again for a week, and guess what? I think it worked. The bad news is that the g-tube feedings are just as hard to figure out because the nausea has come into the picture.

My stay in the hospital with Les last week was tiring. They wanted to keep Les’ kidneys from getting high levels of toxicity in them, so they pumped his body full of fluids. So, Les had to go potty every 60 – 90 minutes – 24 hours a day. Add to that a less than ideal bed situation and beeping IV’s, and it got really old after 3 nights.

After we came home on Thursday, Les was still in the habit of going potty all night long and kept waking us up. Combine that with his moaning from being achy and the whole family walked around like zombies on Friday. Friday was also the day of the Tylenol III (w/ codeine) and vicadin. The only reason we did both was that the Tylenol III didn’t seem to work. It’s not easy to give your child narcotics, especially when there are no visible causes for the pain such as an injury or surgery, etc. But, the doctors seemed to think it was OK and it finally did work.

I was able to get a short 21-hour break last Saturday while Jason took over the duties, including giving Les his G-CSF shot (these are going so-so - not too fun for anyone). I went over to Gammie and Papa Barry’s house while they were out of town. It was quiet. I read, slept, and watched some movies. When I came back early on Sunday morning, I was actually able to smile and be a good mommy. That seems so long ago now though, because we are still having trouble getting rest.

Our clinic visit yesterday also had a bit of “excitement”. On the drive down to San Diego it rained on us a bit and was overcast. I turned the truck lights on in order to be safe, but, you guessed it, I forgot to turn them off when I parked. When I got back to go home, the battery was DEAD (oh, and no jumper cables – they were in a toolbox that had been removed for some important reason a while back – it will be returned soon). Earlier in the day I had told Les that we wouldn’t be able to go visit with the grandmas because of his low counts and my wanting to just get back home, but it turns out Grandma Sue came to the rescue by bringing me some much needed food and calling AAA for me. After an hour delay, in which Les got to see his grandma after all, we were on the road.

PLEASE PRAY! It seems so weird to have been on cloud 9 last week and then dragging bottom this week. We know God is still in control. Please pray for endurance for us all. This was the first week of this new treatment and it is supposed to last until next summer. I wouldn’t mind if you also prayed that Les would be able to NOT have to experience ANY of these side effects.

Some praise reports: a friend came and cleaned the bathrooms while we were at the clinic yesterday – That was such a wonderful gift, Thank-you. We have been receiving a meal once a week for a while now and that is very encouraging also – Thank you to all who participate in that wonderful service ministry. A few weeks ago the Student Venture leadership kids from Chaparral High School in Temecula came over and pulled the weeds on our back bank. There were a dozen kids and they did the work in a couple hours, which would have taken Jason and I a whole weekend to do. – A huge thanks to them!

Wednesday, November 5, 2003

Wed. 11/5/03 - IV Tree

Wednesday, 11/5/03

No Tumors! No Tumors! No Tumors!

Talked to the doctors and found that there will be no change in the treatment schedule based on the clear MRI results. So, we’re still going to be on schedule for chemo treatments until summer of next year (2004).

Les has received his chemo and hasn’t had a problem with anything. He’s currently down at the playroom keeping the volunteers busy. They have cabinets full of games and toys as well as many craft projects available. Three times a day they are open for a couple hours for the kids to come and play. Depending on the number of kids in there and the number of volunteers available, I am sometimes able to leave and have some “mom time”. That’s what I’m doing right now. I have found that I need to be creative about finding time to get on the laptop computer. Les has also discovered the schoolroom and they have literally hundreds of CD-ROM computer games. They have let him bring some back to the room each day. Needless to say, Les and I have had to learn to share the computer. I think I’m doing OK with it - ha ha.

We had a nice treat today. Both grandmas were with us at lunchtime. Karen drove down and Sue came over during her lunch break. Karen was “dying to see the MRI” so we went down to radiology and took a peek. Of course with an untrained eye, we couldn’t make much sense of the spine scans, but on the brain scan we could see that the void where the tumor had been is closing up. Not many people get to see inside their child’s head – I wish it would tell me what he’s thinking sometimes. :)

We go home tomorrow morning. They are going to start him on G-CSF tomorrow which is a type of growth hormone that should help prevent his blood counts from getting and staying low like they have been. I don’t know too much about it yet, but I think it is a shot that we have to give him for 10 days. They will send a home care nurse to our house the first day to make sure we do everything right. It’s nice to know we have help available even when we are at home. I haven’t told Les about this part yet, so you can pray that he tolerates it OK.

We’re all still on cloud 9 around here because of the MRI results. I think I told the whole clinic yesterday. It truly is a “shout it from the rooftops” event for us. Thanks for all your prayers. Please continue to keep Les in your prayers as he still has 8 months of chemo and there are still short and long term side effects that are possible. Pray for protection from any and all side effects!!!

Tuesday, November 4, 2003

Tue. 11/4/03 - No Tumors!

Tuesday, 11/4/03



We just received the MRI results late this morning and they didn’t see any tumors in his brain or spine. I was hoping for a reduction in the number of tumors, but this news was better than I expected.

I really don’t know too much more than this right now. We will continue with the chemo treatments and I’ll ask more questions about what the future holds when I can. We were given the news while Les was playing computer in the schoolroom and I didn’t think that was the appropriate location to pepper the doctor with questions.

Thanks for the prayers. Keep them coming!!!

Saturday, November 1, 2003

Sat. 11/1/03 - Smoke

Saturday, 11/1/03 
Well, we have been at this for 6 months now. Everything seems to be going as per plan and even better than expected when you factor in all the side effects that Les has NOT had to deal with.

Les had his hearing test last Tuesday. Great news – his hearing in his left ear is all within normal levels and his right ear has improved. Praise God!!!

Les is scheduled for his next MRI on Monday (11/3/03) while he is in the hospital awaiting his next round of chemo. It’s my understanding that they will wait for the preliminary results of the MRI before giving him his chemo. I’m not sure how long this process will take, so I don’t know how long we will be in the hospital next week. A normal stay for this new chemo is three days/two nights. We may be delayed a day because of the MRI this time, I don’t know.

The new chemos that Les will get are cyclophosphamide and vincristine. The cyclophosphamide is the one he needs to be in the hospital for; it is given over two days. The vincristine will be given once a week for three weeks at the clinic in an outpatient format, though his first dose will be given while he is in the hospital for the cyclophosphamide. This cycle will repeat every 4 weeks for a total of 8 rounds. Right now our projected end date is in June 2004, though this will probably be changed as we encounter delays for various reasons.

I don’t think Les’ sinusitis is responding to the antibiotic very well. I’m hoping that they can look into it again with the next MRI. We’ve adjusted his feeding schedule so that he doesn’t throw up during the day anymore and that seems to be working good so far.

Fire update: We were never at risk where we live in Murrieta and neither were my relatives down in San Diego. It was a bit smoky around here earlier this week, but then the winds changed and cleared out the valley. We weren’t sure if we were going to get to our appointment last week because the Cedar Fire fire did come within a couple miles of the hospital. The hospital was on temporary evacuation on Sunday and Monday, but our appointment was on Tuesday. We ended up missing Les’ OT at 8am, but we went ahead and kept the clinic visit and hearing appointment. It was kind of weird driving around in all the smoke, but we were never close to any of the fires. I found out that the pumpkin patch didn’t burn after all; the fire just came really close to the property.

Grandpa Barry is still working the fire. He’s part of a strike team on the “Old Fire” in San Bernardino and surrounding mountain communities. He’s safe and tired right now, but still ready to go when and where they tell him.

Friday, October 31, 2003

Fri. 10/31/03 - Halloween

Friday, 10/31/03

“On Halloween we went to Gammie’s house and carved pumpkins. It was such a great time because we made a Buzz Lightyear Pumpkin. And also, we made a Bob the Builder Pumpkin. We tried some new bread at dinner – it was good. Grandpa Martin, Aunt Joanna, Uncle Billy and Jazmine were there too. That’s pretty much all of it.” - quote from Les.

Monday, October 27, 2003

Mon. 10/27/03 - Blue Angels

Monday, 10/27/03
Les had x-rays of his chest and sinuses last week and has finally been diagnosed with sinusitis. He’s on antibiotics now and I hope we will see some improvement soon.

His blood counts are outstanding. His ANC was just above 2000 last week. His weight is also slowly increasing. He was up to 16.5 kg (36 ¼ lb) last week. YEAH!!!

We have another clinic visit tomorrow (Tuesday). Les will also have another hearing test tomorrow. It will be interesting to see if his hearing has changed anymore since the last chemo treatment.

Next week Les is scheduled for his next inpatient chemo treatment with a whole new batch of chemo medicines. They are planning on doing an MRI at that time too. The MRI will tell us if the treatments are still working. The last MRI, back in July was very good in that one of the tumor nodules in his spine had disappeared since beginning treatment. We pray that this next MRI will show similar improvements.

Overall, Les has been doing great. We are really enjoying his company and he keeps us smiling.

We have had some fun activities in the last couple weeks. First, Les was invited to attend a dress rehearsal of the Blue Angels at Marine Corps Station Miramar in San Diego. Les took along his parents and some grandparents and we enjoyed the first class treatment of a private show and then a time to meet the pilots and get pictures and autographs. This was with the Make-A-Wish organization.

Les is now a Make-A-Wish kid. Please note that Make-A-Wish is for kids with “life threatening” illnesses, not necessarily terminal illnesses. Also, Les has until he is 18 to have a wish granted. I don’t know when he will do his wish, but I would like to wait until the treatment is over and he has regained more strength and stamina. Until then, Make-A-Wish sponsors many fun activities and has access to tickets to other fun events that Les is now eligible to participate in.

The other fun thing we did was going Valley Center to some pumpkin patches last weekend with daddy. We first went to Bell Gardens, which is a non-profit educational working farm. Mr. Bell of Taco Bell founded it. There are several different crops and demonstration gardens – including a pumpkin patch this time of year. They also have a ¼ scale model train with a 2-mile track that goes around the fields. We had a great time picking out our pumpkin and riding the train around. The other pumpkin patch we visited was at Bates Nut Farms. Our visit there was short, as it was near closing time. We did browse through the store and see the animals.

Our visit to Valley Center was on Saturday, October 25, 2003. At 2:30am Sunday morning, a fire broke out in Valley Center and it is my understanding that Bates Nut Farms has burned and I’m not sure about Bell Gardens. How eerie to have just been enjoying a wonderful day out there not even 24 hours before major destruction hits. It’s another example of how we never know what tomorrow will bring. Whether through a cancer diagnosis or a fire, we are reminded that we are NOT in control of our lives and we won’t always know the answers to life’s mysteries.

On a related note, Barry Robertson, Les’ grandfather is fighting the “Old Fire” up in San Bernardino right now. He has just come off the lines after 40 hours of continuous efforts. He will get some rest at the Mission Inn hotel and then back to the fire lines again.

Friday, October 10, 2003

Fri. 10/10/03 - Etoposide

Friday, 10/10/03
Les’ ANC was up about 1000 points higher than last week, so we stayed overnight at the hospital for his next chemo treatment last Monday (10/6/03). YEAH! It’s amazing how quickly they can go up, and down.

Les had his hearing test on Monday morning (10/6/03). They can detect a slight hearing loss mainly in the higher frequencies. His right ear seems to be a bit worse than his left ear. Because of the amount of hearing loss, they reduced the strength of the dose of Cisplatin by 50%. Hopefully by reducing the dose, they can minimize any further loss. This is the last time Les will need this particular chemo medicine. Note: the hearing loss is fairly minimal right now, and we don’t even notice it. He does seem to be a little extra sensitive to loud noises though. Please continue to keep Les in prayer. God is able to heal his ears – I believe it!

We also started giving Les his last round of Etoposide at home. After 21 days are over, we won’t have to administer anymore chemo at home. YEAH! It seems though, that the Etoposide never wants to go home with us. I mean the actual bottle.

The first time we were in the hospital for chemo, they told me to go to the pharmacy and pick it up, but with all the confusion over packing and loading up, I forgot. It wasn’t until we were home that afternoon that I realized my mistake. Frantically, I called my mom and between her and my grandma they were able to get it from the hospital and drive it up to us (70 miles) that night.

The second time we needed to bring it home from the hospital with us, the insurance company was balking at paying for it, and it was after 5pm on a Friday. We were able to come home with just enough to get us through the weekend, and then after it was straightened out with the pharmacy and insurance, a friend was able to pick it up and drive it to us.

Now on this last visit to the hospital, I was all geared up to make sure I didn’t forget anything – especially the medicine. We had to wait an extra 3 hours for the medication to be prepared before we could leave, so I had all our stuff packed up and loaded in the car. All I needed was the medicine and Les. Well, I left Les in the capable hands of the playroom staff while I went to the pharmacy to get the medicine. When I got back to the playroom to get Les, he decided that he didn’t want to go home, and he wanted to stay in the hospital “forever”. In the confusion that resulted from me having to physically pry Les’ hands off the door handle and drag him screaming down the hallway and into the car, I forgot that the medicine was still on the table in the playroom (the playroom was closing so we couldn’t stay and also traffic would be heavier if we didn’t leave soon). Thinking that finally everything was in the car, I started off. It was about 3:30 in the afternoon, just about the time the traffic starts to get heavy for the afternoon commute. I drove through the worst of it and then about 25 minutes from home, I decided to check my home phone messages from my cell phone. The last message was from the hospital saying that they had Les’ medicine at the nurse’s station and she hoped that I wasn’t already driving home. I didn’t know if I should laugh or cry as I exited the freeway and started my trek back to the hospital. When I finally had the medicine in my car, it was 5pm and traffic was a mess. I then did the only logical thing I could think of; I invited my mom to go out to dinner at Chevy’s, my favorite Mexican food restaurant. We enjoyed a nice leisurely dinner and then went home when traffic thinned out.

Needless to say, I am very happy that I will not have to bring that medicine home again. Please understand though, that Les will continue to receive chemo treatments. It’s just that he will get a different combination of chemo medicines starting in November and continuing until summer 2004.

Wednesday, October 1, 2003

Wed. 10/1/03 - ANC

Wednesday, 10/1/03
Les was able to avoid a hemoglobin transfusion this last round. Yeah!!! His ANC is still really low though – even lower than before. We think it’s because he’s still battling this cold/cough thing. His next round of chemo was originally scheduled for tomorrow (10/2) but we are delaying it until next week. His ANC needs to be above 500 and right now it is around 300. Check out the Blood Counts for Kids website link under Favorite Websites/ Les’ Favorites/page 2 for more information about what the different parts of the blood do and what normal counts are. The ANC is the Absolute Neutrophil Count (Neut and Benny on the website).

Well, Les is still a bit sick, but Jason and I are healthy again – for the most part. We have been able to adjust Les’ feedings back to a little more reasonable timing at night, which is giving us a bit more sleep. Les is still vomiting occasionally, but not usually first thing in the morning like he had been.

This last week was a bit topsy-turvy. First, our regular Dr. check on Thursday (9/25/03) had us discontinuing Les’ weekly antibiotic dose because sometimes they can lead to lower blood counts. Then, Les’ g-tube site had been looking a bit red, and it was rather sensitive. I took him to see the surgeon on Thursday, and he put him on yet another antibiotic for a week. It seems to have worked because the redness has gone away and Les isn’t quite as protective about it. On top of that, this past Monday (9/29/03) Les had a very slight rise in temperature, so I called the hospital. They assured me he was probably just fine but to keep an eye on him. Well, between coughing and vomiting every day, a touchy g-tube, a slight increase in temperature, and low ANC, I decided for peace of mind I wanted a doctor to see him again and get another blood test.

So, yesterday (9/30/03) we drove down and spent 4 hours in clinic (most of the time waiting). I was informed that Les’ g-tube and temperature were just fine. His cough is still only upper respiratory and hasn’t traveled to his lungs, so we are good in that department. But, his ANC was even lower than last week. I asked what we are supposed to do about this to protect him from infections and was informed that basic common sense prevails – keep him away from germ-infested areas such as playgrounds and wash our hands a lot. I asked about quarantining him as the ultimate protection, but was informed that he is at risk from his own germs as much as from anyone else’s, so we might as well go on with as normal of life as possible using basic precautions.

Where does this leave us? I guess we could buy stock in Purell (antibacterial hand gel) and hand it out to everyone we meet. Or we pick and choose our social contacts and pray pray pray that Les doesn’t catch anything (and still pass the hand gel around).

Please continue praying for Les. Especially that this cough disappears. I’ll try to update the site next week about his counts and when he actually gets chemo. Oh, and Les has a hearing test on Monday. I’ll post the results of that as well.

Saturday, September 27, 2003

Sat. 9/27/03 - Slot Cars

Saturday, 9/27/03
Just wanted to show a cute father son moment. Les (or is it Jason?) got a new slot car set today. Here they are enjoying the first race.

Saturday, September 20, 2003

Sat. 9/20/03 - YUCK!

Saturday, 9/20/03
The past couple weeks have been trying. We’ve all had a congested cough that won’t go away. It is causing Les to vomit his feedings at least once a day, which is sad for him to go through, not to mention the calorie loss that happens with each episode. The first week he lost a bit of weight, but we have played around with his feeding schedule so that hopefully we can minimize the loss of calories if he vomits. It has worked fairly well and Les gained a bit of weight this last week. The downside of it is that we have to go into his room and stop his feeding at 3am in order to give his body time to digest before he wakes up.

The doctors assure me that the cough is most likely a virus that we will just have to wait out. It hasn’t gone to his lungs, Praise God!!! Please pray that the congestion and cough disappear immediately!!!

Les’ last blood counts were low (9/18/03). His white blood cell count and ANC is low enough that his immune system is threatened and we have discontinued the remaining week of this round of chemo. We’ll start a new round of chemo on Monday, October 6th. Les’ hemoglobin count is also getting low again. We’re hoping that by discontinuing the chemo, the counts will improve and thus save us from another transfusion.

Through all of this, Les has been a trooper. He’s been the sweetest little boy who is a joy to be around. This last week I showed him a website I had found that explains blood counts and cancer terms in a way kids can understand (OK, it helped me understand too). Les loved it. He can now put cute names to the different items he hears about. Terms like Captain Chemo and Zapman give a whole new meaning to his chemotherapy treatments and his radiation. Terrill the Tyrant is the mean cancer (picture a T-Rex) that is afraid of little kids who want to get well (as well as surgery, Captain Chemo and Zapman). Plate and Let the platelet brothers help his body heal when it gets injured and white blood cells like Nuet and Benny fight off infections. I’ll put the links to these sights in Les’ Favorite Websites area.

Please continue to hold us up in prayer. I am getting to a point where I’m tired more often than not, and it’s affecting my abilities to care for my family. We signed up to receive meals again, just once a week, but it’s an encouragement to know that after a long day of appointments, I don’t have to cook when I get home. I’m praying God will help me to prioritize the right things each day. Time spent playing one-on-one with Les is something I’ve neglected lately and I feel guilty.

Well, I think that brings us up to date for now. Thanks again for all the prayers that are directed our way. We would be lost without them and without God who answers those prayers and sustains us.

Oh, the car situation is still going on. Jason and Les are in the garage right now reassembling the engine on one of them. Hopefully all will be fixed when they are done.

Saturday, September 6, 2003

Sat. 9/6/03 - Chemo

Saturday, 9/6/03
Les received his chemotherapy on Thursday (9/4) as scheduled. He did great. I on the other hand am exhausted from being sick for so long. Because of my not feeling too great, our friend, Tammy, drove Les and I down on Thursday morning and Jason picked us up Friday night after work.

Les is improving greatly when having his port accessed and de-accessed. He didn’t even cry last night when they de-accessed him. Yeah!

Les spent a lot of time in the playroom this trip. They have volunteers who come in to play with the kids and I was able to go back to the room to rest by myself. Les painted a crocodile and played lots of games while he was there.

Tuesday, September 2, 2003

Tue. 9/2/03 - C&J Sick

Tuesday, 9/2/03
Well, I’ve been sick for a week now with a cold and Jason just started his cold this last weekend. We’re both taking antibiotics and washing our hands like crazy so Les won’t get any of our “sickness germs”. I think I’m going to be better within the next couple days, and Jason doesn’t seem to be stricken too hard right now.

Our cars are also a little “sick” again too. I don’t want to bore you with details, but please pray that they are fixed successfully.

Les is doing great! He’s watching way too much TV lately because his parents are not up to the challenge of entertaining him. He doesn’t seem to mind too much though, since TV watching is one of his favorite activities. The other activity that is keeping him busy is Tinker Toys. He received a plastic set at Christmas and hasn't played with them much until this last week. He is getting good at making things and it's great practice for using and strengthening his right hand. Definitely an activity I encourage.

We’re still planning on going in for Les’ next chemo treatment on Thursday, Sept. 4. They will take a sample of Les’ blood in the morning to make sure his counts are high enough before they do the chemo. Les will then go to OT and PT and come back in the afternoon for a doctor check and then determine if he will stay in the hospital overnight for his chemo.

Please pray that our whole family (vehicles included) will get healthy! Thanks!

Tuesday, August 26, 2003

Tue. 8/26/03 - Transfusion

Tuesday, 8/26/03
Yesterday’s blood transfusion went well. Daddy was able to go with us this time. We got to show Daddy all the different rooms in the clinic. Now he has a better idea of where we are when we go to clinic. Les and I go back on Thursday for another blood test and also PT.

I took a couple pictures of the event, so I’ll let them tell the rest of the story.

Thursday, August 21, 2003

Thu. 8/21/03 - Blood Test

Thursday, 8/21/03
Clinic Day today. Les had another finger poke blood draw and he decided that some people do it better than others. Today we had one of the “others”. They did succeed in getting a sample though, so all was not lost. (It really wasn’t that bad, and it looked like he cried more to keep up appearances than because of pain) Anyway the results were a low hemoglobin count. We will go back on Monday (8/25/03) prepared for a transfusion if his counts dropped any more. He’s currently just above the cut-off value for a transfusion.

I know many have asked about donating blood directly to Les, and I asked about that today. Here’s the deal. If someone was a match for his blood type, they could direct donate – for a fee – through the blood bank. The blood would take at least two days to process before Les could get it and then if he didn’t need it, the blood only has a limited shelf life and could well be wasted. Also, it wouldn’t be available if Les needed it sooner than the two day processing time. So, here’s my answer to those of you who don’t mind needles. Volunteer to donate blood whenever you have the opportunity – at a blood drive or a blood bank. There are lots of little kids just like Les who need transfusions (as well as many other “big” people) and your small sacrifice goes a long way to help. I hear that some Kaiser centers have their own blood banks, so check that out if you are with Kaiser.

G-Tube feedings are going great. Les is up to 35lbs now! Oral intake is almost non-existent. I talked to the dietician about this again today and she assured me that it’s OK for Les to be getting all his nutrients through the g-tube. Sure it would be nice for him to continue to eat, but all considered, he’s OK.

Friday, August 15, 2003

Fri. 8/15/03 - Follow Up

Friday, 8/15/03
Well, we’ve been home for a week now. Les was discharged on Friday afternoon (8/8/03) after receiving his first dose of Cisplatin on Thursday (8/7/03). He did great with it. They are concerned about nausea and vomiting with Cisplatin, but Les didn’t have any of it (they also premedicated him with three different meds to prevent it). Anyway, the only “side effect” that I noticed was tiredness. He slept for 3-4 hours at a time during the day and all night long.

Side note: the “official” report is in on the MRI and it confirms that there is no recurrence in the brain and also one of the larger nodules on the spine is no longer there. Praise God! There are still some smaller nodules in the spine. Please pray that the chemo is effective at removing those.

The g-tube feedings are going great. Since we have been home from the hospital, Les has gained about one pound. He hasn’t eaten much by mouth, but that should kick in as soon as his body is used to receiving consistent calories throughout the day. The other really great thing about the g-tube is that all Les’ medications can go through it. No more yucky medicine tastes in his mouth!!! The down side of the g-tube is that it’s a little high maintenance. Jason and I are waking in the middle of the night when it beeps because Les rolled over and kinked the hose. Also, I’m beginning to feel like a nurse with all this “equipment” around the house. Syringes full of water “flushes” and meds and stacks of Kindercal boxes in the office. Praise God, our insurance company is covering all the costs of the equipment and Kindercal.

Les is currently on a schedule of feeding three times a day for an hour each and then for 10 hours at night while he is sleeping. They gave us a portable pump so we aren’t stuck at home during the daytime feedings. Yeah!

Yesterday was appointment day. Les had a blood test (finger poke) and then OT. He then had a follow-up visit with the doctor who placed his g-tube and everything looks great from his viewpoint. His blood counts are great right now and we will go back next Thursday for another set of tests, a doctor check, and PT.

Thursday, August 7, 2003

Thu. 8/7/03 - Chemo

Thursday, 8/7/03
Chemo will start today as scheduled. They started the Cisplatin at 2:00pm via an IV and it will last for 6 hours. Prior to giving Les the Cisplatin, they gave him a combination of medications that are supposed to help eliminate the nausea feelings that are common with Cisplatin, though they say that the nausea often doesn’t kick in until 3-5 days later. We will stay at least one more night in the hospital and if Les is doing well, we’ll go home on Friday 8/8/03.

Les has done great with his g-tube. It’s going to be nice to be able to supplement his calorie intake and make sure he stays as healthy as possible. He’s happy with it too, now that it’s not as tender.

The night before last (Tuesday 8/5), daddy came down after work to spend the evening with us. That was a nice treat. Les went to in the wagon for a little while and we went to the activity center and played Hungry Hungry Hippos (noisy, but fun). Daddy tucked Les into bed and then had to go back home.

Yesterday (Wednesday 8/6) we had visitors too. Elizabeth (and her mom & brother) came to have lunch and play with Les. They both rode in Les’ wagon and they had fun playing in the activity room. It was great to see Les playing and moving around after being in bed for so many days.

Today we did a little PT/OT here at the hospital and then went to the activity center for about an hour. Les enjoys the activity center, but his favorite activity continues to be TV/Video watching while relaxing in bed.

Monday, August 4, 2003

Mon. 8/4/03 - G-Tube

Monday, 8/4/03
We’re still in the hospital and it looks like we’ll be here more days (I’m not sure yet how many more). They didn’t tell me that the process at the beginning of using a feeding tube takes such a long time. We didn’t start using the g-tube until 6pm on Saturday night (8/2). The first order was to give Pedialyte at 5cc’s (1 teaspoon) per hour for 24 hours. Then we moved to Kindercal (formula for big kids). We started at 5cc’s and hour for 6 hours and then we increase it by 5cc’s every 6 hours until he gets to 45cc’s and hour. By our calculations, that will bring us to Tuesday evening (8/5) at 6pm. There are some different ideas of what to do at that time regarding the start of chemo, etc. But, since it’s not set yet, I’ll refrain from publishing it on the web.

Our weekend was pretty uneventful. Jason came down Friday night and was here all day on Saturday. He went back home to be at church for Sunday morning (he runs the sound board) and then came back down here for the afternoon. He went back home to go to work this week, so Les and I are settling down here in the hospital.

Les is feeling better today. He was pretty sore over the weekend. I’m hoping we can get him up and moving today. They have an activity center down the hall and wagons and tricycles to tootle around on. I hope we are able to keep ourselves entertained by means other than TV.

That’s about all I know right now. Please be praying that there are no side effects from the Cisplatin and Etoposide chemos that he will be receiving later this week. I don’t even want to say what all the possibilities are, so just pray that Les doesn’t experience any.

Saturday, August 2, 2003

Sat. 8/2/03 - MRI

Saturday, 8/2/03
Les’ g-tube placement surgery yesterday went well – very fast. I happened to be in the wrong spot when he was in recovery because I couldn’t hear the intercom when they called for me, so Les ended waking up on his own. He was perfectly fine when I finally tracked him down. What was I worried about?

After he woke up they transferred him over to a room (I caught up with them in the hallway on their way over). He got settled in and started his videos. His tummy started being “uncomfortable” a little later and they gave him some morphine. That seemed to do the trick. He slept fine last night with another morphine dose at 4:00am.

Today has been real low-key. We’ve just hung out and read, watched videos and napped. We still haven’t seen the doctor for his follow-up prior to using the g-tube, but that’s what happens on weekends. It sounds like we will be here until Monday at least. I’ll update when I know for sure.

We talked to one of the nurse practitioners assisting the oncologists and she said there was a draft report on the MRI from last Monday. No signs of any tumor in his brain, which was expected since they took that entire tumor out, and there were signs of reduction of the size of the tumors in his spine. I’m not sure when the “official” report will be available, but this is still good new to us.

Tuesday, July 29, 2003

Tue. 7/29/03 - Tests

Tuesday, 7/29/03
Les had a MRI yesterday along with a hearing test and a clinic visit. We will hear the results of the MRI in the next couple days.

His hearing is great and hasn’t changed at all. Please pray that this next round of chemo does not affect it. The Cisplatin drug is known for affecting the hearing.

Les has continued to lose weight and has a poor appetite. We are going to get a g-tube for him to supplement his nutrition. There will be a surgical procedure to place it and a couple nights in the hospital to recover and learn how to use it. Though I’m not happy about having Les go through another surgery, I’m excited to know that I will be able to “feed” him and help him stay strong enough to fight the cancer and withstand the treatments. Les will still be able to eat normally. He is also excited that he won’t have to take the oral chemo through his mouth anymore, I can put it in his g-tube and he won’t have to taste it. The surgery is scheduled for Friday, August 1st. Depending on how Les’ blood counts are, they may start his next round of chemo over the weekend since we will already be in the hospital.

Ever since radiation was completed and we moved home, life has been a little “better”. It’s nice to be home even if it was dirty and cluttered with 6 weeks worth of “stuff”. Last week, our “NO APPOINTMENT” week, was spent sorting through the “stuff” and settling back in. There were cars to get repaired, ants to chase away and laundry to do. In other words, I had a normal week as a stay-at-home-mom. This week is much the same except we have a few appointments to get to. The next year of our life will probably be a variation on this theme. One or two days of appointments and then home the rest of the time.

You should be reading this on our “New” web site. I’m really sorry it took so long to actually get it online.

Actually you are now reading it on the 2010 version of the website

Thursday, July 17, 2003

Wed. 7/17/03 - Break

Wednesday, 7/17/03
Well, it’s been a couple weeks since I last updated. I apologize for keeping you in suspense. Les did go to camp the week of 7/7/03 – 7/12/03. Les also finished his radiation treatments on Friday July 11, 2003. YEAH!!! No more 7am appointments and being away from home so much!

There were a few “big” things that have happened.

The first “big” medical thing that happened, and it wasn’t a huge deal, was that Les needed a blood transfusion on July 8th. His blood test after the first day of camp showed very low hemoglobin counts, so he had to skip the second day of camp and go to the hospital instead. He had a great time that day because I let him watch television all day long. The transfusion went smoothly with no complications. He looked a little “pinker” after he received all those new red blood cells. The neat part was the next day the camp went on a field trip to the Rueben H. Fleet Science Center and Les was shown an exhibit that let him “fly through a heart”. He got to see where all those red cells had gone and what they did inside of him.

The next “big” thing that happened was that my grandpa passed away on Wednesday, July 9th. He had been battling Parkinson’s for many years now. He was in a convalescence hospital since Christmas of last year after experiencing a stroke. Over the last 6 months, we all had a chance to express our love to grandpa and start preparing for his passing. Grandma is doing well.

The last “big” thing is that my cousin is having his surgery today at UCLA Medical Center. He is having his cancer tumors removed from his lungs. This is a big deal, so please pray that all goes well with surgery and recovery. [Update- they were not able to get the big tumor out, didn’t even try because of its size and proximity to the heart. They are going to try to shrink it with chemo and if successful will try the surgery again.]

Where are we now in the process of Les’ treatment? We have completed the radiation and the first session of chemo. We are currently in a 3-week “break” from treatment. Les will get another MRI on July 28th as well as a hearing test and maybe some other tests. The next round of chemo starts the first week of August. It will start with an overnight stay in the hospital where they will give Les an IV chemo drug called Cisplatin. Then for a total of 21 days he will get Etoposide (the same chemo he has been on already) at home. There will be a break of about 7 days and then we go back to the hospital and start this cycle all over again. We will be on this regimen for 3 cycles (12 weeks). After this is complete, we will start a different regimen. I’ll fill you in on that one when it gets closer. Of course, Les’ blood counts will need to be at certain levels before they start each cycle, so we have been told to expect delays along the way.

Wednesday, July 2, 2003

Wed. 7/2/03 - Fun

Wednesday, 7/2/03
Yesterday was “Free Tuesday” at Balboa Park. This week we went to the Natural History Museum, the Model Railroad Museum and Les’ favorite, the Rueben H. Fleet Science Center. We enjoyed our outing and stayed a little longer this week since the museums held more interest for Les.

Today we went over to Dr. Meltzer’s office for a quick “social call”. We wanted to make sure the “zipper” was healing as well as we thought it was. He gave it two thumbs up!! Miracles of miracles, we actually pulled out of the parking lot before the 20 minutes were up and didn’t have to pay anything!! YEAH!! Now that was a quick visit.

The afternoon/evening was spent at Ocean Beach. This is an area adjacent to Point Loma, but faces the open ocean (Point Loma faces the harbor). Les and I walked a little way down the pier, but didn’t have time to go all the way to the end. It’s the longest pier on the West Coast. We were meeting great-grandma for lunch and needed to get back. We lunched in a local hangout that had lousy service but really good food. After lunch we went back to the pier with great-grandma and did walk all the way to the end and back (Les made it ¾ of the way, then I carried him).

This evening, grandma Sue took Les back down to Ocean Beach where they were having a farmer’s market. Les had a llama ride, went in the bounce house, ate tons of samples from different vendors, and basically had a great time – Just the two of them.

Six more radiation treatments to go. We will finish up on Friday, July 11, 2003. YEAH!!

Monday, June 30, 2003

Mon. 6/30/03 - Last Week

There are 4 whale in this picture - Really!
Monday, 6/30/03

Well, last week I was still tired. I guess that comes with the territory.

Last week Les and I went to Balboa Park on Tuesday (free day for some of the museums). We saw the Hall of Champions (sports) Aerospace (planes, space ships) and Automotive (cars, motorcycles) museums. At this age, Les thoroughly enjoyed all of museums and we were only gone about 2 hours. After a late nap, we decided to head over to Sea World and see the night shows over there. We also got to go up in the sky tower at night. It was one of the few clear nights in the past few weeks, so I thought we’d better take advantage of it. Also, the tower has a “tree” of lights coming from it’s point and the lights are colored to represent the American flag. Les loves “United States of America flags” so this was an extra special treat to be able to go up inside of this one. While we were at the top, we could look down into all the areas of Sea World and saw that the baby killer whales were in the observation pool. We headed over there and saw two mommies and two babies swimming around. One of the mommies was really nice and would come right up to the glass and stay there while we “petted” her. She would even follow you when you walked away. Needless to say, we really enjoyed our visit with the whales that night.

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

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

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

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

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

Monday, June 23, 2003

Mon. 6/23/03 - 1st OT

Monday 6/23/03
Mondays are turning into a long drawn out appointment day. We start with radiation at UCSD and then go over to Children’s for his weekly clinic visit and blood draw. Then we go across the street to Occupational Therapy. We finish at noon usually, but today we had to back over to Children’s to pick up Les’ MRI scans and take them back over to UCSD. We didn’t get home until 2:30pm – we left the house this morning at 6:30am. Needless to say I needed a nap. Les was fairly cooperative and rested quietly while I slept. I can’t understand how his little body can undergo all this treatment and still not need an afternoon nap.

Les had his first official Occupational Therapy appointment today. He got to play in a ball pit, swing on a big green “pickle”, play with Mr. Potato Head. I guess the goal is to improve his fine motor skills and coordination. He seemed to enjoy it OK.

Thursday, June 19, 2003

Thu. 6/19/03 - Radiation Simulation

Thursday 6/19/03
This morning was another long radiation appointment. They are preparing for some different treatments for Les and we needed to stay an extra hour. There was a lot more hair loss today. Because we got out of radiation late, I cancelled Les’ Physical Therapy appointment. He still wasn’t awake enough to cooperate very much at 11:00am. Instead, we went to the activity center after his blood draw. Then there were errands to be run and yet another request for Point Loma Seafood. This time the selection was shrimp. Les ate 11 little boiled bay shrimp (the kind in shrimp cocktail) dipping some in the cocktail sauce. The rest of the day was spent at grandma’s resting and getting ready to go home the next day.

Wednesday, June 18, 2003

Wed. 6/18/03 - Seafood

Wednesday 6/18/03
Les and I drove to San Juan Capistrano to visit with the Fowlers. They are the family that I working for from home prior to Les’ diagnosis. They are wonderful and were the ones responsible for arranging the website creation. I am eternally indebted to them for this wonderful gift. Les and their son, Sammy, played for hours and I had to drag Les away so I could get home in time for my spa manicure/pedicure.

Les had me take a detour by Point Loma Seafood on our way to Grandma’s because he was hungry for seafood. At this point I would buy him anything he was willing to eat. He chose crab. We were able to buy one precooked crab leg and a sourdough bread roll. They cracked it for us and Les ate about half of it (I ate the other half) while sitting looking out over all the boats in the harbor. We made it home just in time for me to drop Les off and head over to my cousin’s house.

My cousin gave me a coupon for my birthday good for one spa pedicure and we went together. We followed it up with dinner and shopping. Not exactly the way I would have envisioned spending my 9th anniversary, but it was better than staying at Grandma’s by myself.

Tuesday, June 17, 2003

Tue. 6/17/03 - SD Zoo

Tuesday 6/17/03
This morning the radiation machine was down and our appointment was 1-1/2 hours late. Les did get an opportunity to actually meet Allison, the little girl who has her appointment after Les. Les noticed her daddy taking some of her hair out. I was able to talk with Les later that night about his hair. I explained that his brain is sort of like the earth (he learned about the different layers of the earth about 6 months ago in preschool). I told him that the radiation needed to get to the middle of his brain, which would be like the inner core of the earth. In order to do that, it needed to go through the other layers. His hair was like the crust of the earth and the radiation would affect each layer it touched. He understands now that his hair cells are being scared away by the radiation just like it is scaring away his cancer cells.

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

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

Monday, June 16, 2003

Mon. 6/16/03 - Hair Loss

Papa Barry shaved his head "to be like Les"
Monday 6/16/03

Les had radiation first thing in the morning. I noticed that when I was rubbing Les’ head (before he woke from anesthesia) I was getting some hair on me. His hair had begun to fall out. After radiation at UCSD, we went over to Children’s Hospital for his weekly clinic visit. We hadn’t seen this doctor yet and she asked if Les had shown any weaknesses in walking or anything because of his tumor. Obviously Les has improved greatly in that area since she didn’t notice. His coordination and strength are improving rapidly.

We also talked to the dietician because Les’ appetite had diminished greatly over the past week. Les had lost one full pound in one week. She had some good suggestions and gave us some samples of liquid meal replacements. She also touched on the fact that if he didn’t eat enough, they would have to surgically implant a “g-tube” into his stomach so that we could put food into him. That was the first I’d heard about that possibility and I wasn’t too thrilled with the idea.

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

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

Saturday, June 14, 2003

Sat. 6/14/03 - Zipper

Saturday 6/14/03
We came home yesterday for the first time in two weeks (last weekend Jason traveled to San Diego to visit us).  It’s good to be home.  Our garden has grown and is even showing signs of baby vegetables.  Our corn stalks are almost as tall as me (5’10”).  Amazing since we started with little seeds back in March.

Jason’s dad traveled down from San Luis Obispo today for a short visit.  It was good to see him and Les enjoyed his company as always.

Well, I’m starting to see the effects of the treatments a little bit more now.  Not much, mind you, but a little. Les’ appetite has diminished greatly. When offered a whole ice cream bar, he only takes a few bites and then is “full”.  Please pray that I can find enough “healthy” foods to feed him that he will actually eat.  He still likes his chicken nuggets, though he only eats about 2 now.  I’ll be talking to the dietician on Monday during our clinic visit and I hope to get some good information from her.

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

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

Tuesday, June 10, 2003

Tue. 6/10/03 - Update

Tuesday 6/10/03

This was on the home page for a few days.

Les is doing great.  He completed his 9th radiation treatment today; 21 more to go.  Radiation will last until mid July.  He is also taking an oral chemotherapy (liquid form) every day.  So far there have been no side effects from either radiation or chemo and we're about 2 weeks into the treatment.  God is answering my prayer in that regard.  Les seems to have enough energy to go through a day without taking a nap (much to my chagrin).  We (Cecillia and Les) are staying at my grandma’s house in Point Loma during the week and Jason is staying at home so he can continue to go to work.  The separation is not very fun for anyone.  The weekends go by all too fast.  I can’t wait until the radiation part of treatment is completed and we can spend more of our time at home.  Thanks again for all your prayers.  They are greatly appreciated during this interesting time in our lives.

Thursday, June 5, 2003

Thu. 6/5/03 - Survivor Park

Thursday 6/5/03
Today started “Week 2” of Les’ treatments. There are a total of 53 weeks, so 52 more to go or one more year depending on how you want to look at it. There could be delays along the way depending on overall health and blood counts, but we’re praying for good health and good results so that it will go as quickly as possible.

Les had a physical therapy appointment today. He surprised the therapist and me by wanting to do 100 leg presses. We did leg presses last week, but I think he only did about 20. He lays on an inclined board that moves on a track and has a platform placed at 90 degrees to place his feet on. He starts with his legs bent and then straightens them and slides the board up the track. He actually did this 100 times today. He also climbed the stairs twice as far this week as last week and played basketball and kickball. He was doing such a great job that before we knew it, it was time to leave.

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

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

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

Tuesday, June 3, 2003

Tue. 6/3/03 - Sea World

Tuesday 6/3/03
Everything is going good so far. Les wasn’t excited about taking his chemotherapy medicine this afternoon, but we did get it down. I asked Les what we might be able to do to make it easier next time and he suggested having sugar with it. I called the nurse and she said I could do anything with it I want. I can put it in ice cream; I can put it in grape juice; I can put whipped cream on it; etc. I haven’t told Les all the suggestions yet, that way I can control the process a little better. So now the creativity starts. With Les’ cooperation, I’m positive we can figure something out.

We went to Sea World today (Les and I have passes). We saw lots of shows including Shamu and thoroughly enjoyed our afternoon. Les even conned me into buying him an ice cream cone – with the understanding that we wouldn’t have ice cream at grandmas later. He must have remembered because he didn’t ask for anything after dinner. [Les took the photo of Shamu with his own camerz]

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

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

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

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

God is Awesome!!!

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

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

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

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

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

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

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

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

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

Wednesday, May 21, 2003

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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