(Lucy napping in her red wagon)
Where do I even begin? Hold on tight, this is going to be a long post.
My mind is racing as I think about what has happened over the past 48+hours. On Tuesday I had a thriving little girl who was bouncing back nicely from 6 weeks of radiation therapy. She was playing, riding her bike and even eating. We were on cloud nine until around 9:30 of that night. That's when things took a sudden turn for the worse. By Wednesday morning things had spiraled out of control. An emergency MRI showed what appeared to be a mini-sroke in the Thalamus of the brain. Lucy was started on high dose steroids to treat any swelling that may be affecting the optical nerve and baby aspirin to treat a possible blood clot. The most perplexing issue was that clinically she showed no other defeciencies, other than a vertical Nystagmus in her eyes.
As we waited for the steriods to work, her eyes began to worsen as she continued to lose visual acuity. As of this morning she literally could not see her hand in front of her face. Let me just say here that she handeled all of this so well. Erik and I were visably shaken and quite honestly scared to death. We were watching our baby girl slowly go blind. It was gut wrenching to say the least. Another symptom that began to show itself was lethargy. She had slept almost 18 of 24 hours. Her words were beginning to slur a bit and she would sometimes have a hard time forming a thought.
While this was going on there was a team of doctors working literally around the clock concerned about Lucy. We received a report that emails were flying at 1:00am as doctors racked their enormously smart brains looking for an answer. The decision for another MRI this morning was batted around 3 or 4 times, until Lucy's deterioration became too apparent to ignore. At noon we went for the MRI.
I must stop here and give a little bit of back story. All night and all morning, Erik and I prayed for two things. One, for God to clearly reveal to the doctors what was going on. Two, for the problem to be easily corrected. Clearly the first step would be to identify the problem. Although the docs went ahead and ordered the MRI, there was a concensus that not enough time had passed to show any variations from Wednesday's MRI. Boy, were they wrong.
There was such an increase of swelling in the Thalamus that even to an untrained eye, I could see there was a problem. After much deliberation it was decided that Lucy was probably suffering from a vitamin defeciency of Thiamine. While it now seems like such a simple issue to overlook, one would never expect to see this in children. In the Western world, Thiamine defeciency is usually only encountered in chronic alcoholics. The doctors here only remember 2 other cases of it presenting in children. Please note, no one can guarantee that this is the problem. However, many great minds feel fairly confident that it is. The way to reverse the problem is a simple antecdote. You just replace the vitamin that is nonexsistent.
Here's how it probably happened: Lucy went weeks without eating. Even though she was on TPN to receive calories, she was not receiving multi-vitamins. MTVs are usually added to TPN, but due to a national shortage Lucy was supposed to be taking an over the counter chewable one. In theory that is great. But when your child refuses to eat and then vomits 15 times a day, a chewable vitamin doesn't do much good. So basically she was in a starvation state, totally malnurished and vitamin depleted (just like I was when I was diagnosed with Celiac disease). Here's where is gets tricky. So, she's in this starvation state and then on Tuesday she ate watermelon and a gallon (not literally) of Whipped Cream. Her body went into carbohydrate shock and used up an stores of Thiamine she had to process what she was eating. The immediate onset of the vision loss was an instant reaction to this metabolic change.
Lucy received an IV dose of Thiamine right before she went for the MRI as a shot in the dark. No one had any clue if she needed it or not. When Lucy woke up from her sedation she had color in her cheeks, she was responsive and....could see. Not great, but she could make out people's faces and could tell you how many fingers you were holding up. For those of you that did not hear from shouting "hallelujah" for miles and miles aways, let me tell you that I was.
I wish there was some way to put into words how I feel tonight. But I can't. It would be like trying to describe your first kiss or the moment when you first held your baby. I am so filled with awe, gratitude, amazement and pure bliss. I seriously could shout from the rafters with joy. I feel as if I am almost in shock. I can't believe the miracles I witnessed today.
First of all, we prayed specifically for God to reveal to the doctors what was going on. Not only did he answer, but he used Lucy in an unlikely way to accomplish this. Dr. D assured us that if Lucy had not deteriorated as quickly as she did, they would have likely waited until Monday or Tuesday to perform another MRI and things could have been dire by then. An untreated Thiamine defeciency can be fatal. While easily corrected, it can cause very unpleasant outcomes. God used Lucy to speak to the doctors. I was angry, scared and utterly out of my mind watching my baby lose her vision. But if we had all not gone through 24 hours of hell we would still be here cashing rabbits and missing the mark. Isn't is amazing how God answers our prayers?
The other thing is that I have been asking God for a sign that the radiation was working. While I spent my time looking for clues in music, writings, etc., all I needed to do was wait and let God work. Just because he did not answer immediately did not mean he was not going to answer at all. If Lucy had not gone through this horrific experience we would not have been able to see the scans from the MRI that showed the cancer being melted away. While we still have many hurdles to jump before we can claim any victory over her cancer, it was amazing to see God's healing hand being laid upon Lucy's disease. Be careful what you ask for. Sometimes God just might answer your requests in ways that don't appear to be the most direct or easiest. He gave me an aswer but tested my faith in the process. While I would like to think I would pass the test, I feel as if my trust and hope in Him waivered so much yesterday and today that I would be quite unworthy of any prayer being answered. But my God is greater than that. He knows my heart and through his compassion and forgiveness I was able to receive his mercy and grace.
****If there is anyone reading this post tonight that is not a believer, or doubts God's amazing ability to answer prayers, please read and then reread this post again. He is answering our prayers and healing our daugther every day. He hears the prayers you all have said for Lucy over and over and over.****
Our blessings came today through a horrible trial. God's mercies were received through ceaseless tears.
Listen here for these sweet words by Laura Story. My anthem for this season in my life. Thank you dear, sweet Lord for your mercy, your blessings and your love. I bless your holy name and say amen, amen, amen.
(Lucy's chariot taking her to the Opthamologist while snacking on chocolate ice cream.)