Lucy had clinic today and was scheduled to receive IV methotrexate like last week, well she didn't get it last week because her ANC (absolute nuetrophil count) did not double from the steroids, matter of fact it plummeted to 260. Anything below 500 means her immune system is basically gone. And this has happened before. It seems to happen every other cycle of vincristine/dex. So I wasn't in too much shock last week. Basically, it is her body telling us she needs a break from chemo. Her bone marrow is tired. So we laid off chemo all last week. So today we go back in, and her ANC plummeted even further. It is sitting at a mere 20. Yep, read that right 2-0. I was in shock. It hasn't been that low since we were first in the hospital at Memphis when she was getting 4-5 different chemos. So no chemo this week either. And I am a big fan of letting her body recover, it just freaks me out because when she's not on chemo then a pesky leukemia cell can get through. So we go back next week to see if its on the rise. There are a couple of other numbers in her blood counts that tell us if its on the rise or not, its not 100% accurate, but there are two tests that test for lymphocytes and monocytes. And those two are basically immature nuetrophils. So it means her bone marrow is making them, they just haven't matured enough to actually be useful to her immune system. Those numbers were looking pretty high, so that gives me hope.
So, why am I so freaked out? Ok, maybe freaked out isn't the right word. Why am I so disappointed and let down by this? I think because while we live every single day with this disease, it is days like today that like to remind us exactly how severe it is. I mean Lucy has been doing well and we are semi-normal most times. Its just a knock on our door from cancer saying "hello, all has been going great, but I wanted to remind her that I am still here". Asshole. Cancer is like the salesmen you try to be polite to once. It's like ok, you are here, we will give you a few minutes and let it sink in, but then you are going to have to go because we have dinner and life to attend to. So the salesman leaves, but since you took his bite the first time, he still comes knocking every once in a while just to remind you. So today, our salesman came back. And he sold us shit. He sold us a number we don't want. We would like to have a refund please on our therapy.
So, anyhow, who knew a number was so important. 20 is our important number today. Normally, here are our important numbers 300, 500. When her ANC is between 300-500, she can get half chemo. When its above 500, she gets full chemo. We want above 500 because we head to Memphis in 2 weeks for our very LAST IT with chemo!!! woo hoo!!! she will still get spinal taps, but they won't have chemo in them.
Another important number to us today is 47. That is how many weeks of maintenance Lucy has been through. 47 out of 120. We are almost half way through her protocol.
I am not a mathematician. I do not like math, I do not like numbers, I do like odds or statistics, but yet, I am living in a world of numbers. Funny how life goes sometimes. sigh......
ok, well enough rambling...I have to now go scrub the entire house from top to bottom, floors included. And the doc said to not even let Lucy play outside at all, that is how low her numbers are. So our castle will just have to do for the next 7 days....shit...another number!
Aagh - poor Lucy ... I really hope that she manages to stay well AND that her ANC improves a LOT! Praying :)
ReplyDeleteI wanted to share a story of hope with you. My daughter's husband Jeremiah was diagnosed with ALL Leukemia when he was 3 and he relapsed when he was 13. He is now 31 years old and has been cancer free for half of his life :) He is one of 25 children featured in the book Angels & Monsters - A Childs Eye View of Cancer. Here is an excerpt from the book and the link to the page it is featured on. Not everyone's story ended like Jeremiah's - but his is a reason for hope.
ReplyDeleteJeremiah, Firefighter
Jeremiah was age 13 when he drew his picture, "Having cancer is about being all alone and lost in the desert." His road to recovery was a long one. First diagnosed with acute lymphoblastic leukemia (ALL), at age three, his treatments stopped around age seven, then he relapsed when he was 12 and finished treatment two years later. Living in the country, he had to travel two hours for treatment. He was fortunate to live in a supportive family and small, close-knit community.
Now 21, a firefighter and emergency medical technician, he rides either a fire engine or an ambulance to help others. He also trains schoolchildren in fire safety and prevention.
"We see a lot of tragedy, but we get to help a lot of people, and that's a good thing," said Jeremiah. "One of the things I like about it is I'm now working in the same community where I grew up, and all the people who helped me when I was younger with cancer, I'm able to return the favor now."
He wants cancer patients to know that even though the treatment is hard and feels like it's never going to end, "Don't give up. Just don't give up. Hang in there and have hope."
http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/StoriesofHope/kids-with-cancer-tell-the-world-about-courage-and-hope