Tunnel Time

Surgery Update

Hello loved ones! As I sit down to update you, I only wish I had better words to describe how your prayers, thoughtfulness, and overwhelming love sustain us. We are blessed. You are such gifts to us. Surgery went very well. Biopsy is complete. It was a long day, but Libby did great. She was pretty upset waking up, but after a little pain medication and some food she was good as new. We were exhausted, and had a much needed peaceful night. She woke up a little sick this morning, but it was short lived. And it hasn't slowed her down a bit! She is 100% Libby today, and we're so thankful! We should have some more information next week. We'll keep you posted!

The nurse commented on how much my phone rang yesterday. As always, I received call after call, and text after text. Because we have so many of these things, Hib and I juggle these appointments, and it's usually only one of us who goes. But I NEVER feel alone. We came home to a delicious home cooked meal from our dear friends. I've said it before, but I can't say it enough. You all personify His love. And it's positively inspiring. Thank you. We love you! 

Tomorrow is Surgery Day

Well, we made it to surgery day without getting sick. Praise the Lord! We're scheduled to be at the hospital tomorrow at 8:30am. We'll have Libby's biopsy and they'll double check her for any weird bacterial stuff going on in her little system. As always, we are so thankful for your prayers, and humbly ask you to amp them up tomorrow for us. I'll keep you posted!

Love y'all!

We're home!

And we're thrilled! Libby is awesome. There are no words to tell you how covered we feel in your love and prayers. We love y'all.  The doctors didn't want Libby to go under anesthesia so soon after her little episode. They want to wait 7 - 10 days. I have to keep her out of school, because they don't want her to get sick. They don't want to postpone the surgery for any longer than 10 days. And they would have to if she were to get sick. 

In the meantime, we're home! And loving it. I'm taking care of my baby. She's taking care of hers. And He's taking care of all of us. 

 Please keep praying for Libby's doctors as they decide how to best proceed with her treatments. Hopefully, we can figure some of this other stuff out along the way, too. And we want to stay well! You know I'll keep you posted! Thanks, y'all!!!

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!