Thursday, August 12, 2010

One Month Ago Today--Stuff I Don't Want to Forget

My Dearest Little Story Bell,
We found out on month ago today, you have leukemia. You had been sick for a few weeks. Daddy had taken you to the doctor a few weeks before and they said you had a virus, but you weren't getting better. We found a pediatrician online near our house. She was wonderful! She had never seen us before, but she acted like she had been your doctor since birth. She told us she thought you had pneumonia and wanted to check your hemoglobin levels because you looked pale. They pricked your finger and got some blood. The nurse came back and did it a second time because she said it had an air bubble, but I think she was double checking because it was so low. The doctor came in and told us your hemoglobin was 4 and 10 was normal. She told us she was sending us to Vanderbilt for more testing. She said your hemoglobin could be low because of the pneumonia, because you were anemic or it could be leukemia. It scared us when she said leukemia, but we just wanted to get to Vanderbilt to have more tests. When we were leaving the office they told us we didn't have to pay. That's when we got really scared! I remember thinking, 'No, you take our money! It's going to be okay! My baby isn't that sick!' You and I had to go to the restroom on the way out and I was shaking and started to cry because I didn't know what was going to happen.
The drive to Vanderbilt was LONG! We had to go through the lunch rush traffic and it seemed like it took us forever to get there. I don't remember a whole lot about the day. They did a chest x-ray, gave you an IV and took your blood for testing. A doctor, we have no idea who she was eventually came in and told us that it did not appear that you had leukemia because your white blood count wasn't elevated. We were relieved, but still scared to death as we waited for the hematology team to come and speak to us about your blood tests.
When Dr. Allison came in I was standing near the bed and Daddy was sitting nearby in a chair. I really don't remember what she told us, but I remember her saying leukemia. I was shocked! I just remember staring at her. I could feel Daddy's presence next to me and I remember wanting to look at him because I knew he was feeling the same thing I was, but I couldn't take my eyes off the doctor. I know I called all of the grandparents, but I don't remember talking to anyone but Grammy. I remember before I told her I reminded her that she was taking care of your sisters, so she had to keep it together.
At some point, a child life educator came in and tried to talk to you. I remember her saying, "Story, my job is to make your life normal." I thought, 'What is she talking about your life is normal!'
The walk to the elevator and the ride up are all a big blur! I do remember getting off on the sixth floor and seeing a little boy about 10 walking down the hall. He was bald and pushing an IV. There was also a little girl about 3 pushing a baby stroller, she was bald. I just remember thinking, 'These are our people. We are now part of this crowd.' Later that day or maybe the next day the doctor came in. As she was examining you I remember looking at her name tag
and seeing Oncology/Hematology under her name tag and thinking, 'Oncology means cancer!'
That first night in the hospital was rough! The nurses had to give you three bags of blood so they were in constantly checking vitals and changing bags. I couldn't sleep at all! I would dose off and then they would come in and I would wake up. I would then lay there thinking about the day and what all had happened. By the time I would dose off again, the nurses would be back.
Daddy and I had to keep our sense of humor during all of this! The first time we took you down to the OR for one of your procedures we had a big laugh. We talked with the anesthesiologist and the other staff about exactly what was going to happen to you. They told us what they were going to do to you, when they would call us back to see you and that they were going to take good care of you. We walked with them down the hall. They turned left to take you to the OR and we turned right to go to the waiting room. Daddy and I grabbed a bite to eat and then sat in the waiting room. They have a big screen TV with all of the patients' names in the OR and their status (Jim-recovery; Sam-OR, Sue-holding). We were really nervous, so at one point Daddy got up to check the board for your name. It said Story-OR. Daddy practically came running back over to where I was sitting, "Story's in the OR! That board says she is in the OR!" I just looked at him..., "Honey, where did you think she was?" We both burst out laughing!
Another day in the OR waiting room we had another laugh. There is a lady who calls the patients name when they are ready for the family to go back to recovery. She then walks you back to recovery. We were waiting for you to be finished with one of your procedures. When we heard,"Story." We jumped and walked over to the podium. When we got there she was gone so we waited a couple of minutes. She came back and saw us standing there and looked at us like, 'What?' We said, "You called Story." She said, "Yes," and looked at again like, 'What?' We again said, "Story." She said, "Yes, Story." The poor woman had just walked the 'Story' Family back, so she didn't know what these two crazy people in front of her wanted! She finally realized we thought she was calling us and said, "There is a Story Family." We said, "Oh, okay. You are going to call out Cox, not Story." We went back to our seats and laughed at the fact that we were so ready to hear our name called we would have walked over for anything close!
I am surprised by how much we have learned about leukemia in such a short period of time. When you were first diagnosed I wasn't even sure how to spell leukemia. I also had no idea what chemo actually was! I didn't know that you could sleep while your mom chatted with a nurse that was injecting chemo into your body.
We found out today Lyric is a bone marrow match which is very exciting! But we also found out that they may want to go straight to the bone marrow transplant which we were not expecting!
This has been a wild roller coaster ride the last month, but Miss Story Bell I can't think of a better companion to be riding with. You are amazing! You just accept things for what they are and go with the flow! Not one time in the three and a half weeks that we were at the hospital did you ask to go out of the room. One time you asked when we were going home, but other than that you just knew we had to be there and that is how it was. One the day of your procedures, I think there were four now, I can only remember one day you asking for food and saying you were hungry. The other days you just knew you couldn't have food, so you didn't even bring it up. I know being cooped up in the hospital and being away from Daddy and sisters was hard, but I did enjoy our time together. It was nice to spend time with you and have nothing else that I needed to be doing on my mind.
I know all of this is FAR from being over Baby Girl, but know I will be by your side the whole time!


Jill said...

Thank you for sharing and I know how important it is to get it all down! We miss you and hope it's all sweet breezes from here on out!

Brenda Couch said...

Thanks Christy, I am now bawling---at work.

I'm really glad you got all that in writing. You'll be glad you have it when this is all a distant memory!

Love you guys and miss you much,