Day 100----that's how my mind, body and soul feel right now. Once we received Lucy's diagnosis we were cautioned to prepare ourselves for good and bad days. There was no way anyone could have prepared me for today. I woke up on cloud nine after Lucy had such an amazing day yesterday. I just knew that today would be even better. I was nervous about our meeting with St. Jude, but somehow I had buffered my fear with exhilaration from last night. Today was the reality check. And boy was it! It has become very clear that we are facing an uphill battle and have a long way to go.
We actually started the day on a positive note. Lucy woke up alert and STARVING! The Decadron (appetite stimulant) is doing its job. She wanted a banana, pudding, sausage and lots of Powerade. And then.....it all started coming up. I was so disappointed. But she still kept asking for food. Lots of food. And then it would come up again. This was the cycle all day. The doctors had taken her off Morphine and we decided that it was the Lortab that was probably making her vomit. So now she is on 2 anti-nausea medicines (Compazine and Zofran) and a regimen of Tylenol and Motrin. If we are not able to manage the pain this way she will have to go back on the Morphine. That would be a huge set-back. She has got to be off of that before we can go home. We have got to get a handle on this vomiting situation because Lucy is down to 28 pounds. She came in last week at 36. Her little body has no more pounds to spare. I put her little size 4t panties on her tonight and they literally fell off. It was so sad. But I know that will get better with time.
We had our meeting with the doctors from St. Jude today. And while they did not tell us anything we did not know, the harsh realities of what Lucy is facing became crystal clear. She will be treated under the SJMB03 protocol, which is high dose chemotherapy and radiation. It's going to be hell on her little body and she is going to have to fight hard. We meet with the head of the radiation department tomorrow to make some decision about the radiation aspect of treatment. Please pray that God would make answers crystal clear
Right now we have to focus on getting Lucy stronger. We will be working with OT and PT to retrain her muscles in her legs and arms. Particularly her legs. It won't be fun for Lucy but we know that once she can walk again she will be so much happier. It's all just part of the healing process.
I am angry today. The numbness has worn off and I think I am finally starting to process this whole horrible nightmare. I don't know why Lucy was chosen for this. I don't like it. In fact I hate it. I don't hate God, but I hate he is allowing this to happen. Lucy is strong. She's a fighter. She WILL beat this thing. But in the meantime it is my job to be mad like a mommy, cry like a mommy and then comfort her like a mommy.
One thing that kept playing through my head today was that although I am mad right now, I still have absolute faith that God will heal Lucy. I will pray with that belief ( "So I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24.) And faith will get me through. I don't know how someone would be able to take even one breath facing this battle without faith. When I couldn't stand today, I know God stood for me. When I couldn't breathe today, God did it for me. He will continue to do so and will fill in the gaps for Lucy too. When this all settles down and Lucy is not on the forefront of everyone's minds, I ask that you please continue to pray for her each day. We were given a 6 month treatment plan that is going to turn our lives upside down. We will make it through with the help of family and friends, but we will need all the prayers we can get.
My friend and college roommate Jennifer sent me an email today and reminded me of a very special Bible verse that seems appropriate to the decisions we have to make this week
"If any of you lack wisdom, let him ask of God, who gives generously to all without reproach, and it will be given unto him." I repeated this verse many a day in college, but never had any idea it would mean to much to me today.
Some special pictures from today:
Lucy woke up starving. I pointed the camera to take the picture and she automatically gave me a little smile. My children as so used to seeing that dang ol' camera in their face everyday.
Amanda and Nelson visited. Amanda loved on Lucy all afternoon and Nelson provided some much needed comic relief at times.
Auntie Cheri and Grandpa. Cheri has been here since Friday and had to leave tonight. I cried and cried and miss her already. I can't wait until she comes back.
A sweet moment of Daddy holding Lucy. This is the first time anyone has held her since Thursday morning. She insisted on going to the big potty instead of in the bed pan. It hurt like mad, but she toughed it out and did it. And Daddy's heart was exploding with joy.
Lucy sat up in bed and worked a puzzle during PT. Oh how she hates PT, but never quits--even when she is miserable. What a fighter!
Mommy got to hold Lucy, too. After she "walked" with PT, she had to sit up straight for 15 minutes. This was a harder task today than yesterday, but I helped support her weight to make it a bit easier. This was the first time I've felt as if I'd actually done something to help her get better since surgery (besides lots of hugs and kisses)
The absolute most precious moment of the day. I don't even have words for this.