Literally we are still in Atlanta. Figuratively I can't even begin to tell you where we are. Trying to put into words what has happened is rather hard. Erik and I feel as if we are stuck in some hell on earth that seems to never end. I'll try to recap yesterday's events as we best as I can.
We started yesterday as we usually do. Lucy was up by 8:00, with her first therapy session beginning at 8:30. We were scheduled for non stop therapies until 11:30. It was by going to be her hardest day yet by a long shot. That was the goal, though. Friday was our scheduled discharge date and Lucy was set to begin 2-4 weeks of outpatient rehab here in Atlanta the following Monday. (we had planned a weekend full of Atlanta site-seeing for our family, including a trip to the American Girl store.) The morning's therapies included 2 speech sessions, which is always a little worrisome. Since being here in Atlanta, Lucy has gained body strength like a rock star. She has blown everyone away with her progress. Cognitive fatigue still remains a big problem.
At 10:30 we were leaving her 2nd speech therapy of the day. She had spent 30 min on the computer doing math problems and memory activities. I could tell while she was working that she was tired. Her brain was struggling to put simple patterns together. As she was walking with her walker her right hand went limp. I sort of thought she was just being whiny because she didn't want to go to PT next. I encouraged her to put her hand back up on the handle, but noticed that she was veering into the wall. Panic set in and I got down in her face. I told her to squeeze my hand and talk to me. She tried to tell me her tummy hurt, but her words were so slurred that I could hardly understand her. The sweet PT that was with us ran to get a doctor while I picked Lucy up and ran to our room. I sat on the couch with her rocking her back and forth. I was hysterical. I kept yelling at her to talk to me and look at me. Her whole right arm was limp and she couldn't speak. I picked up the phone and somehow through my crazy crying I called Erik and told him to get back down here immediately. My sweet uncle made his plane available and my cousin flew him down here within 2 hours.
(Amanda was here with me but was literally walking out the door to go to the airport when Lucy's event happened. It was agonizing seeing her go, but I knew she had to. Lucy's tutor and my dear friend Cissy is actually in Atlanta right now visiting her family so she was able to come be with me yesterday afternoon and the youth minister from our church came as well. God provided those friends when I needed them most.)
When Erik got here Lucy had already had a CT and we were down stairs in the sedation room waiting on our turn for an MRI. Lucy never woke up, except to moan or cry, after the "episode." Thankfully Erik got here before she went back for MRI. And I am so glad he did because as we were taking her back for sedation Lucy vomited and had a small seizure. The doctor here wouldn't agree that it was a seizure which made me really mad. For one, he didn't even see it. Secondly, we know that what she had at LeBonheur was a seizure because it was recorded on EEG. What Lucy did last night was the exact same thing.
After the MRI was read the doctor came and told us he saw tumor activity in her brain. Of course we were devastated and scared. We had a good cry and then made some calls to Memphis. To make a
very long story short St. Jude and LeBonheur are not willing to corroborate Atlanta's findings until they have reviewed the scans themselves. Lucy has always had abnormal scans. There is scar tissue in her brain from surgery, radiation and meningitis. Without having a good understanding of what is normal for Lucy it's hard to make a definitive statement that she has relapsed.
I am angry and frustrated that we were not able to leave today. It sure wasn't for lack of begging on our part or Dr. W's end. Dr. W has been absolutely amazing and we just feel so blessed to have her as a doctor. If I've learned anything since being in Atlanta its that Memphis is off the charts lucky to have LeBonheur and St. Jude in the same city. Those two hospitals are world class and in a league of their own. That's why we need to go back. We need to be with the doctors who know (and love) Lucy and our family. We are dealing with potentially devastating news and I want the absolute best doctors in the world caring for my baby. And that's what we have in Memphis.
Today was agonizing. Erik and I had a lot of opportunity to stare at each other, stare out of the window, stare at Lucy and fill our day with worry and tears. Lucy was actually in good spirits today and was amazingly strong. She did take a nap in my arms outside but other than did really well today. She was very tired, but seemed to be cognitively in good shape. That is what makes this whole ride so hard. Yesterday was another "I think I'm losing my baby" day and today she looked as if nothing every happened. How are we supposed to process that? Are we supposed to have hope or should we start grieving?
Honestly, I think right now I am just numb and I am mad at myself. I feel as if I've let Lucy down. I don't understand how I could have so much peace that we were making the right decision to come to Atlanta only to take Lucy home so abruptly. There wasn't a bone in my body that felt it was wrong. It will be hard leaving tomorrow because I was looking forward to what day rehab was going to do for Lucy. I wanted this for her so badly. I wanted it for our whole family. It seemed to be such a perfect fit for her. As I write this my stomach is in knots as I think about walking away from this rehab program. It is literally painful to think about it.
I just don't understand. Right now I am looking at this situation and I'm struggling to see the blessings that were gained here. We have met some great people but I don't even feel as if God used us to be a blessing to anyone. I would at least like to know that we are walking away and made a difference to someone, somehow. Our time here was brief. Too brief. I can say that I will leave here with a handful of names that will be added to my prayer list. Maybe that's it. Who knows. Surely we weren't brought here just to have names added to our prayer list. Surely God would have led us to those names in another way. Ugh. It's just so hard to make sense of anything anymore.
My Dad told me tonight that I may never the blessings received or given this side of heaven. While that doesn't bring my a lot of comfort right now, I will continue to pray that God would not let Lucy's suffering be in vain. If anything good can come of it, I hope that someone will come to know Christ by witnessing the miracles that God has already performed in Lucy's life. I will never stop praying for more.
The plan is to be out of here by noon tomorrow. We will transfer to St. Jude via hospital transport. I am hoping for a plane ride, but it might be a 6 hour journey via ambulance. Either way, by tomorrow night we will be surrounded by our family and my arms are already aching. Lucy is so excited about seeing Ella and vice versa. They were so precious tonight speaking on the phone. Those two girls love each other so much. Right now, more than anything, we need to be together as a family.
My prayer tonight is that the Lord will grant us traveling graces, that we will be reunited as a family and Lucy's MRI will be deemed cancer free. Everything else will fall into place after that. There are some major hurdles to cross tomorrow. I am asking God to go before us and pave the way.
1 Chronicles 28:20 "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the LORD God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the LORD is finished.
