Welcome to our site

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

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.

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.

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!

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!!!

Tue. 11/4/03 - No Tumors!

Tuesday, 11/4/03

PRAISE GOD!!!! PRAISE GOD!!!

THERE ARE NO TUMORS IN LES’ BODY!!!


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!!!

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.
Don't use this subscripe to: link
Use the "Follow by Email" box at the top right instead. I can't seem to figure out how to delete this old link.