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Showing posts from November, 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 tolera

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

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 hemogl

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,

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. T