Brinley was awakened at 6 AM because she was running a fever, and every time she has a fever they have to draw blood to see if she has an infection. So they couldn't wait for her to wake up. Luckily the nurse drawing the blood was wonderful! She was in and out so quickly brinley hardly had time to cry. We had gone through some bad blood draws, so I was relieved to see it go so easy. That would be the last one she would have, because today they would put in her central line. That is a tube going into her chest, under her skin and into a vein that goes into her heart. That is how the administer the chemotherapy because it can burn the skin if you do it through a needle. It must be some pretty powerful stuff, because I have to wear gloves to change her diaper 48 hours after she has had the chemo. So the central line will be what they use for IV's, blood draws, and to give her any medicine. The tube sticks right out of her chest and it's a pretty good size, so they tape it down so she can't pull it out, but we have to be pretty careful. It makes me nervous.

Before that, though, came the good news. My Aunt Nancy happened to be visiting when the doctor came in, so she stayed with Brinley while we went to talk to the doctor. Thanks Aunt Nancy! She told us she has ALL - Acute lymphoblastic leukemia. That was great news. That put her survival rate at 90+%. We went down to lunch in the cafeteria since we had someone to watch brin for a minute, and were laughing at ourselves for being so happy that our daughter has ALL. But the thought of losing her had been unbearable, and we knew at that point that she would probably survive. And that was the best news we had had in a long time! That made us in good spirits.

They gave us the treatment plan after that. I'll try to give a quick outline, it's still new to me so I'm still learning but here's what I got: She will be given several medicines for the first month. First of all the chemo will be once a week. After the first four days, she will get a shot and if she has no allergic reactions, she can go home. That should be Saturday. Then wednesday, we will go back for her second dose of chemo. they will check her blood count and give her a transfusion if the red blood cells are low. So donate blood if you can!! They will do that ever week the first month. Also the first week, she will get another bone marrow biopsy and that will determine how well the treatment is working. It sounds like this will be a difficult time. She has to take a steroid and the doc said she will get something like "roid rage" and be somewhat out of control. So we will have to deal with that. She said especially at 2 years old, she will be having a lot of temper tantrums. She won't know how to handle her frustration and can't talk about it, so she will be acting it out a lot. At the end of the month, they expect the leukemia to be completely gone. They have to continue treating it though, or it will come back 100 percent. So the next step depends on the results of the bone marrow biopsy. They will be more agressive if it is not gone, or less agressive if it is. The next phase will be lots of spinal taps and chemo. That's about 2 months or so. We'll learn more as we see how the first month goes. Then we have 4 more months of chemo, and she should go into a maintenance phase, which is supposed to be quite peaceful. That will happen to be right around the time we have the baby, thank goodness! So that's the long term plan. It will total about 2 1/2 years, but it is the better of the treatments. The other treatment for AML is four months in the hospital for very agressive chemo, so we'll take the 2 1/2 years! Let's pray everything goes according to plan!

The surgery went well. While they were sedated they also did a spinal tap and put some chemo into her spine. (apparantly leukemia likes to hide there and the normal chemo can't get to it. Smart little buggers.) When she woke up they only let one parent back there. So I went back, and when she woke up and saw me, she started crying for her daddy. She wouldn't let me even touch her!! The nurses had to hurry and get David to come back so she would calm down. Finally David came back and held her and he had to sit on the bed with her while we wheeled her back to the room. It was kind of funny, he was a little embarassed to be wheeled around in a children's hospital. lol.

The day ended rough though, as usual, with brinley just coming out of the surgery and being tired and hurting. So the gave her some more morphine (her new best friend) and then her oxygen level dropped too low. So we had to hold the oxygen mask by her face and she was MAD! After a half hour of fighting with her, the nurse was going to have to put the oxygen tubes in because she refused to let us hold the mask by her face. Finally the nurse decided to let her fall asleep first, then we snuck the mask in by her pillow so she wouldnt notice.

She got her first dose of chemo after she fell asleep. The nurse put it in and she didn't even budge she was so tired. It went just fine. She slept all night again, it had been a long day for little Brin.

Getting mentally ready for surgery

Daddy and Brin get to ride through the hospital on the bed after surgery.

Long day makes baby really sad. :(

Finally able to get some rest


Adria said...

She reminds me so much of Serenity with that sad face and all that hair. I remember how hard those days were, and yet we were still in shock so it didn't seem nearly as hard as it should have.