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!
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!