Monday, October 14, 2013

Expect the Unexpected

 We cruised through the brutal phases of Libby's treatment. I mean, it wasn't a walk in the park or anything. Nothing I'd necessarily choose to go through again. But it also wasn't even close to what I thought having a child with cancer would be like.  It was unexpected. And we have been so thankful.

One of our beloved doctors told me a while back, when we were dealing with who knows what at the time, he said to me, You guys just need to expect the unexpected. And I thought to myself, Are you kidding me, that could be the banner of my life. Expect the unexpected.

So, it should come as no surprise that once we hit the maintenance phase. The “easy” phase of Libby's treatment. We've had a rough time. It hasn't been horrible, but we've had quite our share of little ailments. Things she hasn't quite been able to shake. She's been nauseas. In the mornings. For months. She's had two surgeries to replace her port. She's had strep throat. And she's had these little sores on her lips and her neck. We still aren't sure what those are.

On Thursday she started feeling really badly. And by Saturday, she downright scared the heck out of us. She vomited in the morning, and afterwards she started acting really weird. She couldn't talk. I panicked. I thought she was having a stroke. I threatened to take her to the ER, and then she seemed to completely recover... Then, Hib witnessed the same thing a couple of hours later. It freaked him out. And we decided to take her in. 

Putting on a show for the ER nurses and doctors

The MRI she had today showed that Libby did indeed have a mini stroke. The good news is, she is completely fine. PRAISE  GOD! Apparently, with this particular type of stroke there is complete recovery. Within months, the little spot on her brain will completely disappear. She was a lucky girl (doctor's words). The concern is going forward. The doctor thinks (and he seems pretty confident) this stroke was due to one of the chemotherapy drugs Libby is taking. Children with Down Syndrome are more sensitive to chemotherapy. As you can imagine, this is quite the dilemma. Her doctors rely on this drug to keep the leukemia at bay, yet it poses a risk for a subsequent stroke. And (his words) next time we may not be this lucky. The doctors are putting their heads together. There are decisions to be made. We continue to pray for God  to absolutely smother the doctors with His wisdom.

And speaking of, God was all over this. We are so thankful to be covered in your prayers. We're thankful He allowed us to witness this strange (but fleeting) behavior. I'm not even sure I would have proceeded with bringing her to the ER. Fortunately, Hib witnessed the same behavior for himself hours later. Those were the only two little episodes. In the ER, every single test-the CT scan, the X-Rays- came back completely clear. We were almost sent home Saturday night when Libby suddenly did another weird thing with her right arm. When I told the doctor, he made the call to admit us. They set up the MRI. This stroke was so small it could have easily been missed. God was not going to let that happen.

We're still trying to figure out these other little ailments. Hopefully answers will continue to unfold. Our plan was to biopsy the little sores Libby has been dealing with. Now, there is the the concern of her going under anesthesia with all she's been through. So, we'll see.
You wouldn't have believed her hair after the EEG
 
We're thankful for the answers we do have. We're thankful for all of you! We're thankful for the amazing doctors and nurses we've been blessed with. And we're thankful that our sweet girl is doing so well! She would blow you away. I actually started really worrying about her brain yesterday because she was just so darn happy. She seriously wouldn't stop laughing. She was having the time of her life. In the hospital. And I just thought, Something has to be wrong. How can she be this freaking happy? Nice, huh. I don't know why Libby has to add this to the list of all she has to go through. I'm definitely still wrestling with this. I did read today that all suffering has meaning in His kingdom.  So, we offer this to Him, along with everything else, for His purposes. He'll work it for good. This little girl is our real life superhero.

Trust. I'm constantly having to learn how to lean in and trust. He continues to show us how little control we actually have. I will say after this weekend it's funny how we rest so much more assured in His hands. Once again, I'd rather leave it to Him. The Master Orchestrator.  Thank you, Father!!!!

Thank you, thank you, thank you for your continued prayers!!! We love you all!

2 comments:

  1. sweet girl we are praying for you and answers to your mom, dad and doctors questions. God's got this

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  2. Scary! I will continue to keep Libby and your family in my prayers as always. All the best from Minnesota!

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