Day ... can't remember already

Isn't it sad I've already lost track of time, I guess because it doesn't really matter. All that matters right now is getting Chelsea better and I don't really care how long it takes. Well we had a bit of a misunderstanding today and apparently when your child is diagnosed with cancer on a Friday, you don't get the official sit down with the team that will be treating her. To make a long story short, we were told that would happen today, but the doctors felt they did that on Friday. All we heard on Friday is, she's got AML, but we'll find out what subcategory it is on Monday and then make a road map from there. Then they spent an hour talking about a study we could participate in for her chemotherapy treatment. Everyone was confused today and figured we had already had that "your child has cancer" talk, and the doctor who's "on" this week even argued with us about it. Oh and did I mention that exceptional doctor that we were so excited to have because he is "the main man" in regards to AML and DS...well he's not our doctor. I guess Ryan, Grandma Carolyn, Micah, Jason, and I all MISUNDERSTOOD the two doctors last week when they said "Dr. Gammis will be your primary oncologist." Hmmm isn't that weird. We're extremely frustrated to say the least and I have calmed down enough now that I'll call the patient advocate in the morning. I'm sure there's nothing they can do about it b/c everyone has reassured us over and over again that all the doctors are doing the same thing. They follow a set protocol and follow the same book. They act as if it's cut and dry, AML in a patient w/ Ds. I suppose it is, but I'm sure there's not a single person out there reading this blog that wouldn't want the best of the best to be in complete control of their child's cancer treatment. Deep breathe....I'm not wanting to get worked up about it again. Just stay tuned.

On another note, here is what we know about Chelsea. This is all information we picked up from the fabulous nurses this weekend. We did meet with our real doctor (I guess you could say) and her nurse practitioner. Our doctor is called a fellow and she's studying under Dr. Gammis. She doesn't always know the answers immediately, but I feel good about her and I'm sure she'll find out any answers she doesn't know off hand.

Chelsea will have 6 treatments of chemotherapy. It's scheduled to take place over the next six months, but will likely take a little longer depending on how she handles it and how healthy we can keep her. Each treatment is a little bit different, but after each one, we'll have to stay in the hospital until her counts begin to recover. After chemo her immune system basically is wiped out and we have to wait until she's at least on her way back up before she can come home. She'll finish this first round tomorrow night and they're guessing it will be two to three weeks before we'll head home. Then we'll probably only be home for a week before it's time to start again! I'll explain how the chemo treatments are different when we get to them.

It will be VERY important to keep her healthy this winter. The little time she'll spend at home she still won't be up to par and will be very susceptible to catching bugs. While we're at the hospital she'll be exceptionally vulnerable and that's why we have to stay here, in case she gets a fever, infection etc. We hate to limit visitors, but we know you'll understand this and realize how EXTREMELY important it is to stay away if you are or have been sick, or if someone in your family has been sick lately, even if you think you didn't catch it. We'll also try and keep most her away from large crowds, lots of kids etc. Anyone who works around kids or around sick people should also probably wear a mask around her while her counts are low. And of course we'll all be practicing exceptional hand washing skills!

Today her red blood count was very low, so she had her first blood transfusion. I was nervous of course, but it went very well. Before the transfusion she was even weaker than yesterday, not walking at all and took a three hour nap this afternoon (during the transfusion!) After she got her rest and her new blood, she was up and rearing to go. She even did some walking this evening! It was so good to see her bounce back like that. Micah and Jason came to see us and she took a couple of pictures for us. Since we've been here Daddy has taught Chelsea how to make faces at all those nurses that kept poking her. It's okay though, they still think she's super cute!




Okay I'm soooo tired. Chelsea didn't want to go to sleep tonight b/c she was feeling so good AND she probably thinks midnight is her new bedtime! We'll have our work cut out for us when we try to go back to a schedule at home.