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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.

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.

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.

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.

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.

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.

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.
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