Day 3, The Fight Begins

Okay, I'll admit it, I lost it. I've done so well just trying to soak in all the information this week. It is happening so fast and I know the cure rates are good, so I just focus on that, but tonight, it's here, it's in my face. Reality has actually hit me as we're preparing to give Chelsea her chemo. It will be on her IV for 4 entire days. We were talking to the nurse about how it happens. She told us about how they take all the precautions as it's so powerful. They "suit up" just to get the IV bag of chemo ready. They have to be very careful none of it leaks out b/c it would burn someones skin. I was also reading the papers that tell what the drugs are and the side effects are as well. I finally just said it out loud. I am so scared. And then the tears began flowing. I can't explain this feeling. Yes I've been scared all week, but when I'm actually faced with injecting this poison into my baby's body, I just can't handle it. Maybe it's because I've seen others who have been through awful situations at the hospital and I'm just extra cautious and scared. There are two little buddies of Chelsea who's story's keep replaying in my mind. One baby was overdosed w/ pain medicine and barely survived. He know has lifelong problems b/c of the overdose. The other little one of course is our little angel Gabi. How do we know when we hand our children over that we're making the right decision? How do we know that we're not making a decision we'll regret for the rest of our lives? I just fear that if something happened after giving her this toxic medication I would never forgive myself. I would always wish I would have taken her home to live with us in our arms until the end. There's no statistics, no doctors, no literature that can assure me she will be okay. I have to come to the realization that I am putting it all into the Lord's hands. I am handing it all over to Him tonight, my baby, my love, my life.

As I back track through today's events I will try to explain things to the best of my ability. The lab woke us up this morning ... you guessed it they needed more blood. Thank God for Roy! He got it on the first try! It was a calm morning and I finally decided I needed a bath, so of course once I get in there, I hear Ryan through the door, "the doctors are here." I hurried out, barely dressed and they shared some results with us, AML. They determined from her labs that she would need more platelets before she could go into surgery for her Hickman catheter and her spinal tap. After they gave her a unit of platelets, they had to ... yep get more blood. Roy had already gone home, and the lady sent up was pretty sassy with me when I asked her if she was good with babies and people who are hard to stick. She told me she does it everyday. Hmmmm, well I know you do it everyday, but I was trying to tell her Chelsea is a hard stick for the most experienced! Well, she tried twice and no luck, so they called someone else in who got the sample. I honestly can't count all the holes in her body.

While they were taking this sample Ryan, my mom and I met with the two oncologists to discuss the drug treatment we wanted to use with Chelsea. There is a standard treatment they've been using for a few years now w/ children w/ Ds who have AML, but there is also a new study that just began enrolling children at our hospital on Wed. So if we chose this new treatment plan, she would be the first child w/ T21 / AML at this hospital. (AAML0431) The doctor explained to us that the new regimen was put together by a group of doctors who are the best in the field and they are hoping this new plan will decrease the toxicity of the chemo. The standard treatment causes many long term effects. They see a 91% survival rate, but many of the children suffer severe complications from damage to their heart and other organs, so with that toxicity considered, only 89% survive. The damage chemo can do to your heart is even more dangerous to children w/ Ds. Their hearts can be severely damaged whether or not they started with a healthy heart or they have had heart complications since birth. Of course we want to protect Chelsea now and in the future, so because the doctors are optimistic that the prognosis of the new study will be similar but the toxicity will be lessened, we chose this new regimen of chemotherapy.

We went straight down to radiation after the meeting where they explained to us the procedure. I had a slight moment of panic as I envisioned the worst...a lung collapsing, her breathing not working right, I worried she would be intubated and then unable to breathe on her own after the procedure. Fortunately it all went smoothly! When they let us see her in recovery she was screaming frantically. She immediately calmed down when I picked her up, then went into the crying again. She had to sleep some of the medicine off before she was herself again. We took her down to the cafeteria to eat b/c once they start the chemo tonight she won't be able to leave the floor for four days when it is finished.

And that brings us back to now. Waiting for chemo. ETA. 20 minutes. Chelsea is sleeping in Grandma's arms and she may not even wake when they begin. I wish I could explain the inner struggle I have with this. How can something so dangerous help her? It's like fighting the bad guy with another bad guy.

Lots of people are asking what we need or what they can do right now. I think I may start a list on the side bar of things that she / we may need to make things a little easier on this journey. It's even the simplest inexpensive things that mean a lot to us right now b/c we just don't have the time to do much.

I will leave you with one of my favorite sayings, ~ Having children is like watching your heart walk around outside your body. ~ My heart aches tonight more than I can put into words. I am surrendering everything and walking blindly right now. I will not fall, I will stay standing until the end. I will do anything I need to do for my baby.

And Grandma Carolyn and Grandma Barb say hi to everyone!