Back from checking the blood...
We have returned from John's two week blood check. As we expected, his white count and neutrophils are dangerously low. When the oncology nurse saw John (after looking at his numbers), she asked, "Where's your mask, Lone Ranger?" (He has never worn one even though it has been recommended.)
Other CLLers know what the counts mean simply by giving the numbers. Prior to my CLL education, I couldn't have told you what a normal count was. But my education is continuing to evolve after going through treatment with John. A normal white count is between 4.6 and 10.9. Today, John's WBC is 1.5. This puts him in the "double low" category. Neutrophils are a part of your white count and they fight infection. The normal range is from 2.0 (which would be considered low normal) to 7.8. John's neutrophil count is 0.3 today. Which makes him extremely vulnerable to infection. He takes an additional (stronger) antibiotic while his counts are this low as a prophylactic measure. And so far, he has gotten through the chemo without any infections.
We didn't get back until nearly noon. It's very cold and wet out. And I think the most dangerous place for John to be is probably the dealership. I threw out a suggestion that maybe he should just stay in (away from people) this afternoon. And to my great surprise, he agreed. His counts have always bounced back within a week of their low point, and I am confident they will again. His counts have been in the dangerously low range after each of his last three rounds and he's never gotten sick. So I don't feel worried about it this time. I think he'll be just fine.
He is slowly feeling better. Although he does not have much energy and feels like he's dragging most of the time. We've been told that some patients take up to a year following the last treatment to feel their energy level return to normal. So just be patient and give it at least six months. He will have more CT Scans on the 22nd and see Dr. Flinn again on the 23rd for his official results. We already know he will be in a partial remission because of the nodes still being there. But we'll know the exact measurements of the nodes from the scans and that will tell us precisely how much reduction has occurred. I will definitely share those results on my blog when we find out. I don't know how long he has to continue checking in every two weeks. He's part of a clinical trial, so the follow up may be different because of the study. I look forward to getting back to three month intervals between office visits.
I'm really looking forward to being able to keep my grandkids overnight again. Especially since our new little grandson will be here in late April and I know Rebecca will need help during those early weeks of sleep deprivation. I have not had the boys overnight since John started treatment just to be extra cautious. If they were here and woke up sick in the middle of the night, it could have had disastrous consequences for John. We'll give it a little more time to be on the safe side, but I'm so ready to reopen Camp Howerton.
Other CLLers know what the counts mean simply by giving the numbers. Prior to my CLL education, I couldn't have told you what a normal count was. But my education is continuing to evolve after going through treatment with John. A normal white count is between 4.6 and 10.9. Today, John's WBC is 1.5. This puts him in the "double low" category. Neutrophils are a part of your white count and they fight infection. The normal range is from 2.0 (which would be considered low normal) to 7.8. John's neutrophil count is 0.3 today. Which makes him extremely vulnerable to infection. He takes an additional (stronger) antibiotic while his counts are this low as a prophylactic measure. And so far, he has gotten through the chemo without any infections.
We didn't get back until nearly noon. It's very cold and wet out. And I think the most dangerous place for John to be is probably the dealership. I threw out a suggestion that maybe he should just stay in (away from people) this afternoon. And to my great surprise, he agreed. His counts have always bounced back within a week of their low point, and I am confident they will again. His counts have been in the dangerously low range after each of his last three rounds and he's never gotten sick. So I don't feel worried about it this time. I think he'll be just fine.
He is slowly feeling better. Although he does not have much energy and feels like he's dragging most of the time. We've been told that some patients take up to a year following the last treatment to feel their energy level return to normal. So just be patient and give it at least six months. He will have more CT Scans on the 22nd and see Dr. Flinn again on the 23rd for his official results. We already know he will be in a partial remission because of the nodes still being there. But we'll know the exact measurements of the nodes from the scans and that will tell us precisely how much reduction has occurred. I will definitely share those results on my blog when we find out. I don't know how long he has to continue checking in every two weeks. He's part of a clinical trial, so the follow up may be different because of the study. I look forward to getting back to three month intervals between office visits.
I'm really looking forward to being able to keep my grandkids overnight again. Especially since our new little grandson will be here in late April and I know Rebecca will need help during those early weeks of sleep deprivation. I have not had the boys overnight since John started treatment just to be extra cautious. If they were here and woke up sick in the middle of the night, it could have had disastrous consequences for John. We'll give it a little more time to be on the safe side, but I'm so ready to reopen Camp Howerton.
Comments
Thanks for being such a wonderful caregiver to John.Tell him we continue to lift him up in prayer!
God Bless,
Deb Light
www.cllcfriends.com
I haven't read that yet, Deb. But I will. John's counts usually tank and then bounce back pretty quickly. So we aren't overly worried. But you never know when you are going to need this kind of information! Thank you. I am behind on my reading again and need to get caught up.
CLL is such a roller coaster ride!!