Another Transfusion (or two)

Yesterday afternoon we got a phone call from Houston with Gracie's counts. 

Hgb 8.3

Platelets - 35

ANC - 864

Yes, that's right, two days after a platelets transfusion her platelets were still only 35. So their suggestion was that we either take her to the clinic here today or that we just watch her and monitor her for symptoms. Well I went ahead and made an appointment for her to see Dr. L at 0930 this morning, but by the time I went to bed last night the last thing I felt like doing was to spend the morning at the cancer clinic. I'm still feeling rather under the weather. So I figured I'd cancel today's appointment and just monitor her for symptoms. The monitoring didn't last long though. By the time we woke up this morning Grace had petechia on her face, scalp and in her mouth. So we decided to keep that appointment. We had a little bit of an ordeal getting lab work done (I ABSOLUTELY HATE INSURANCE COMPANIES, especially ours). But I made one very strongly worded (actually I don't think my words were too strongly worded it was more the tone, I try very hard not to be rude) phone call to our insurance company and within half an hour I had the satellite lab the cancer clinic uses approved as in network for the next year for Gracie's lab work. The phone call was actually pretty funny as I had 4 clinic staff in the room with me while I was on the phone and Dr. L our oncologist was there encouraging me to get the supervisor on the phone. Suddenly when I made that request the problem was an easy fix and it got taken care of. I love Dr. L! When we got the lab results back (it only takes about 3 minutes) they were:

HgB - 7.8

Platelets - 22

ANC - 320

So not only did she need a second platelets transfusion this week but she also needed a blood transfusion. Additionally her immunity has fallen through the floor in just 24 hours, they've never been this low. Which is just great given that we have 3 sick people in our family right now. And they figure she probably isn't going to nadir until the weekend as her bone marrow is getting tired and so the nadir will be lower for longer. But she continues to do remarkably well with all things considered. Hey, even without all things considered she's doing really well. The clinic was ultra busy today so it took a very long time to get everything in order to start the transfusions. The platelets were started at 2:30 pm and they take about 45 minutes to give. Blood has to be given much slower though, over 3-4 hours. We had to get transfered over to the hospital to finish the blood transfusion as the clinic closes at 5. We were finally finished the transfusion at about 7:20 and by the time we got home it was just after 8. Such a long day. I'm exhausted but Gracie had a two hour nap, plus got a jolt of energy with her blood transfusion. She's got a long while before she'll be ready to sleep tonight. 

We're so glad for people like Claudia at the clinic who add a positive element to this whole experience. Gracie got a bunch more beads of courage that she's earned from all of her pokes, and chemo and transfusions and everything else over the past month. Those beads are absolutely cherished by her. We got cake today as they were having an end of treatment party for one boy at the clinic. Gracie also loved the two therapy dogs that came in to see her. These are all the little things that keep Grace excited about going to the clinic every time. With all the things that have happened to her over the past 5 months she still thinks going to the hospital is fun. We can't say enough how grateful we are for all the staff and volunteers who put so much into making this a great experience for our little girl. They're so good that our 5 year old thinks it would be fun to have cancer! It's kind of disturbing to me actually. We've had several conversations with her on why cancer is anything but fun, but really when you're 5 and see your sister come home with necklaces, and arms full of toys, and listen to her talk about the parties she goes to and know that she got to make a wish to do anything she wanted and people are actually going to make it come true - we're having a hard time convincing her. But as parents when you watch your little girl go through so many horrible things, you're awfully glad that people are so good at helping her so that she only remembers the good things. It helps us see how many truly wonderful people there really are in the world. 

So this has definitely been one of our busiest weeks yet, of course I couldn't have an easy week while I was sick. So just to recap.

Mon - Sam's EUA

Tues - Gracie's platelets transfusion

Wed - Gracie's genetics appointment in Houston

Thurs - Just a day to be sick

Friday - Gracie's all day appointment for a platelets and blood transfusion

I figure for all the extra slack that James has had to make up for this week he definitely earns the Greatest Dad/Husband of All Time award. Oh yah, he already had that one!

Stephanie