Yesterday I was praising the Lord that Lucy had a good day and was smiling and talking. Today we were pleading for her life. Literally. As I mentioned in my last post, I went home last night to be with Ella and Jack and pack clothes for what I thought would be tomorrow's move to St. Jude. By the time I got all my chores done, it was 1:45 before I got back down to the hosptial today. I knew as soon as I walked in the room something was wrong.
On regular morning rounds, one of the doctors came in to talk with Erik about the pathology results from Lucy's tumors. Without them, we knew two things. 1. it was cancer. 2. it had spread, But what we did not know was how good or bad it was. Only the pathology report would be able to tell us. Although it was taking longer than normal to get her results back, we had not spent any time thinking about it this week. But just like everything else in our lives right now, one conversation turned our lives upside down.
The doctor informed Erik that Lucy's biopsies came back showing she had Anaplastic Medulloblastoma. It is the absolute worse kind of MB you can have. There is virtually no survival rate. Erik had to carry this burden all day by himself. He did not want to tell me over the phone and did not want to scare me to death by making me rush back down to the hospital. I can not imagine what agony he went through.
After he told me we spent the next 2 hours crying, screaming, cussing...all in a state of shock. Our focus turned from how quickly we could get to St. Jude to do we even treat her at all. We both agreed that if she had no chance of survival we should be more concerned about keeping her comfortable and not putting her through unnecessary treatments. It was almost like one of those movies, or crazy sad books. We actually started thinking in terms of our baby dying.
While we were trying to process this news our nurse noticed that Lucy's back was wet. Wouldn't you know it, she was leaking spinal fluid again. Crap! I swear it seems like Lucy can't catch a break. In a whirlwind of events, neuro was scheduling an emergency surgery in which they were going to reopen her back, patch the hole where the tumor was removed, remove part of her backbone and then resuture her with a temporary drain in place to help with the build up of spinal fluid.
While we were waiting for them to come wheel her away for surgery, we were standing huddled over Lucy like she was already gone. My parents were with us and we were all crying. Trying to comprehend the days events was just impossible. Then the phone rang. Erik picked it up and slammed it down to make it stop ringing. Luckily, they called back. It was another member of Lucy's treatment team with news that would rock our world once again. Apparently pathology had given the doctor the wrong report and Lucy did NOT have the type of MB he told us earlier that day. Erik stood with the phone shaking, crying and trying to listen while I was saying "Thank you Jesus" over and over and over.
Now please don't get me wrong. Lucy still has a nasty cancer and has a long, hard fight in front of her but we know now that she's got a fighting chance to beat this thing. We know it will be hard, but...Lucy is NOT a statistic. She's Lucy! And the statistics don't take into account our God.
So here we are. Breathing, again. Thanking God, again. Wondering why, again. Worried, again. Watching every breath she takes, again. As I've said before this rollercoaster seems to never end. While Lucy was in surgery, I began to wonder why today's events had to happen. I wondered if God was testing my faith at my darkest moment. I'd like to think I did ok, but who would I be fooling? I was a wreck. Erik was a wreck. We were devastated. But I know God knew our hearts. We were just anguished like any other parent would be. We were told our baby girl would probably die. I'm sure God would not have expected us to be happy about that, right? But deep in my heart I knew God would not forsake me. I knew it in that dark moment, and I know it in this brighter moment.
If you look outside of our hosptial room window (I'll try to get a picture tomorrow), there is an old, beautiful church up the road a bit. We noticed when we arrived in this room that there was a large banner with the word BELIEVE written on it. Today, Erik noticed that the banner changed to the word PRAY. We've often wondered if that believe sign was there just for us. I know for certain that the pray sign is.
If our family has ever needed your prayers before, now is the time. Lucy has jumped one hurdle but has a long, long way to go before we are out of the woods. First we have to get her back cleared up before St. Jude will take her to begin radiation. Post surgery she has to lay flat on her back for 24 hours without hardly moving, which I fear could be a nightmare. This could go on for up to 3 days! They are trying to closely monitor her spinal fluid output to determine if she is going to heal properly or not. So as of now it will be at least Monday before we get to St. Jude, if not longer.
Specific prayer request: that God would bring healing to Lucy's back so that we can move forward with treatment.
Specific praise: the spinal fluid was clear today which means she is responding well to the antibiotics the doctors are using to treat the meningitis.
In other news......
1. Lucy was featured on Channel 5 news tonight. http://www.wmctv.com/global/category.asp?c=195967&autoStart=true&topVideoCatNo=default&clipId=5644630
2. Coach Josh Pastner (head coach for the U of Memphis men's basketball team) called both Erik and me personally today to tell us he had heard about Lucy and was praying for her. He is going to send her a "shout-out" tomorrow during his pre-game show. How cool is that?
3. Miss America came to Lucy's room today to visit, but in our state of chaos we were not able to visit with her. Would have loved that photo-op.
4. Lots of activities going on:
T-shirt orders are being accepted and the bracelets ARE IN!
There is a 5K being planned in honor of Lucy with proceeds going to either LeBonheur or St. Jude
Bakesales and other fun activities are being held as well.
And below you will find a flyer from my good friend, Dr. Alexandra Garrett, DDS. who is donating 20% of every Zoom Teeth Whitening during March and April to the Go Lucy Go fund. She owns Germantown Cosmetic and Family Dentistry.
But no matter what, we ask that you continue to pray for Lucy. Please also pray for me and Erik. Pray that Lucy will be healed and we can be the strong parents she needs right now.
In my darkest moment today, I told our doctor today that I had come to peace with God using Lucy for whatever it was he was trying to accomplish---but I wanted her back when he was done. I know it does not work on my terms like that, but that's the deal I want to make. God, you can use her (although I don't like it or understand it), but I want her-- I need her-- back when you get done.