***Happy Family!***

Wednesday, March 5, 2008

ITP Update 3/5/08

Good evening!
Sorry this is a little bit late! I had to reschedule my appointment from yesterday to today because Joel got stuck with a client at work and couldn't make it home in time for me to go last night.
I went today and my count had dropped from 137k to 52k since last week. It's still a decent number, but they went ahead and upped my dose to 6 this week (from 5 the last 2 weeks). Michelle, the nurse in charge of the study, really feels like we are closing in on a number that will work for me and be able to keep things stable. In the meantime, though, as the dose keeps going up, the side effects seem to be a little worse each week and I'd love to just hold off and keep the dose level for a while. I keep reminding myself that me being on the drug may just help someone else in the future who is unresponsive to the first line courses of treatment for ITP and someday, this drug may save someone's life. It's nice to put it in a bigger-picture scale sometimes so I don't get too focused in on myself and how this is all affecting me.

Until next week!

Friday, February 29, 2008

My boys

Thursday, February 28, 2008

Cute Little Sweetheart Girl

My kids are cuter than your kids...

My kids bring so much joy to my heart. I have so much fun with them every day and feel so blessed to be able to stay home with them.

William is totally into Yo Gabba Gabba. All he's wanted for his Birthday, since Christmas, was the Gabbas. In fact, as I sit here writing this, he saw the webpage for the link and piped up in utter and complete joy "Oh, is that the Yo Gabba Gabbas? They're my FAVORITE!" He makes pretend Gabbas out of anything he can get his hands on...Pooh bath toys, Fisher Price Little People or random toys he finds about the house.

Hunter has hit his terrible twos. I think that given the right circumstances, he could take William out. He has so many cute friends that are just his age and I love setting up playdates for he and William.

Miss thang has decided that it would be really nice to sleep through the night! After several weeks of a couple nights on, a couple nights off, she has gone 6 nights in a row, usually sleeping at least 10 hours. I love sleep! It couldn't have come at a better time with the treatment I'm on making me more tired. God knows what we need and when we need it! She's started belly laughing and grabbing at things and can make her feet kick toys that are out in front of her or above her. She L.O.V.E.S. her daddy and her brothers. She likes Mommy too, but those boys she will stare at forever!

I love my kids. As much work as they are and as much as I feel like we need to regain control after the year we've had, they're good kids and they usually respond fairly quickly. And they're so stinking cute!

ITP Update - 2/28/08

So here's an update to catch you up on the last couple weeks:
1/29 Platelets 15k. First injection was 3 (whatever the heck they were measuring it with -I heard micrograms, but they were mixing stuff and it took them like an hour the first week to figure out the math to mix the stuff with).
2/5: Platelets up to 117k; dose left at 3.
2/12: Platelets down to 40k (this has happened with other patients on the drug); dose upped to 4.
2/19: Platelets down to 34k (I had my kids' cold); dose upped to 5.
2/26: Platelets up to 137k (Over the cold!); dose left at 5.

So, once I got over being sick, my count went back up fairly quickly.

I have to say this also: there is one nurse who does an excellent job with the injection. I feel a small pinch when the needle goes in, and that's usually it. There's another nurse who does okay, but her technique is not so awesome. A new third nurse just started and she gave me the injection on Tuesday. YEOWCH! I will not be asking for her to do it again anytime soon! Also, the last two weeks with the higher dose, I've had extreme fatigue all week long and even some pain in my bones. I thought I was just being a whiney over-reactor, but when I went on Amgen's website, I read that fatigue has been a side effect of the drug and that one person in the trial complained of bone pain. Go figure! It's a little sucky that as soon as I get to start sleeping through the night (This is night number 7 for Olivia!) I'm more tired than ever. However, I'd rather be tired and alive than have all the energy in the world and be dead. Wait. Nevermind.