Sunday, December 29, 2013

We're Home

Thank you so much for your outpouring of love and prayers.  I don't have a lot more information at this point. I'm still very overwhelmed. I'm still a lot of different things. But with all that, I have these great moments of peace. I attribute this to your prayers. I really do. And...we made it home! I can't believe it. At one point they were talking about keeping us in the hospital for a couple of weeks. And two days later we're home. We're so thankful. And, of course, quite nervous. Please keep praying for us. Libby is doing amazingly well. This seems impossible, but she seems happier than usual. She's a little weaker. You can tell she's not 100 percent. But she seems to be gaining her strength back slowly. She's talking. And she laughs constantly. This little girl!

I'm hoping to find out a lot more information this week. Where exactly we go from here.  I know the next few weeks are recovery weeks. Rehab weeks. And the goal is to take every precaution to try to keep another stroke from happening. This entails taking baby aspirin everyday. Aspirin poses its own risks, but the benefits for Libby outweigh these risks. Keep those prayers coming!

I'll let you know what unfolds...

Friday, December 27, 2013

Please Pray

And if our hope for Christ is only for this life, we are more to be pitied than anyone in the world (1 Corinthians 15:19)

I'm not sure I'm in a place to actually be writing this post. I don't really feel like writing. But I'm going to write anyway. I write for Libby. I write for myself. For our family. I write because I believe in our Father's goodness. I believe He is in control of every detail of our lives. He's working every single thing for good. He loves us more than we can begin to comprehend. And somehow this is all part of His perfect plan. I don't like this part of His plan. But I don't see the entire story like He does. I'm stuck in a chapter. A crappy chapter, by my standards. A chapter that is breaking my heart. Luckily, I know how the story ends. I know it's beautiful. Glorious. I'm just struggling a lot with the in-between.

Things have been crazy since Libby's last treatment. That's why it's been a little radio silent over here. One thing is for sure-we do have a compelling story. We were in the hospital. Made it home for Christmas. And then ended up back in the hospital. She has a virus. Chemo has done a number on her blood counts. And this morning, we got even more news. Libby had another, more significant, stroke. Totally unrelated to leukemia and chemotherapy. She has something called Moyamoya Disease (I know, it sounds like I'm just making stuff up). It's a cerebrovascular disorder. It's rare. But it's more common in children with Down Syndrome. It's pretty scary stuff. It's progressive. Without treatment, it's terrifying. Thankfully, there is treatment. Brain surgery. If they determine Libby is a candidate. We pray she is. However, the brain surgery-equally terrifying. To me, anyway. But I'm not a neurosurgeon. So that's where we are. We're still in the hospital. The doctors are orchestrating next steps. We've got more tests. We've got rehab for Libby. And we'll go from there.  I wanted to get this out to you, our faithful prayer warriors. Because we need every single one of your prayers.

Our nurse cried with me, today. She told me how amazing Libby is. As Libby giggled in the bed watching her TV show. She told me she's always thought children with Down Syndrome are angels. I can't tell you how many times we've heard this. I don't know if it's true. But, for me, the evidence is mounting. Libby impacts my faith. Daily. She rewires my thinking. She teaches me about His love. But I digress. This nurse, she shared chapters of her life with me. The messy ones. The painful ones. And she shared how she can sometimes see, often in hindsight, God's miraculous piecing together of her story. She shared how He's strengthened her faith. He's proved Himself true. And I told her I'm really just sick of all of it. Especially for Libby.  I just want her to be happy. That's it. I just want her to be happy. And she looked at me and said, But you already know our bodies are just our shells. Underneath SHE IS. She really really is. You know this. And I knew instantly it was Him. Reminding me, the truth so often unfelt by me, true joy is found only in Him.

Please pray for us. We love y'all.

Friday, December 13, 2013

December Treatment Update

Christmas is in full swing around here! And my girls, like me, absolutely love it. 
 We watch Elmo's Christmas at least twice a day. I try to deny the third and fourth (and fifth) daily requests.

Annie, a girl after my own heart, is ever the little shopper. Libby has taken a trip to the North Pole with her daddy! We're wrapping presents. Eating too much. And loving getting all the fun cards in the mail. Did I mention both our girls flipped off our ottoman while we were trying to get our own Christmas card picture? Apparently, Hib and I are hilarious. And they laughed so hard they both just rolled right off. The laughter quickly turned to tears. But we got a picture. At our sweet little girls' expense. Yep, 'tis the season!
It's also time for Libby's chemo treatment. This Monday. Would you pray for us? She'll be sedated. She'll be getting a drug she's never had before. It's replacing the drug she was having so much trouble with. Unfortunately, this new drug causes even more nausea. And she struggles with a lot of nausea as it is. She'll also be getting her IV chemo, and an IVIG infusion. It's a long day. My prayer is for Monday to go smoothly, but also that Libby is not horribly sick afterwards. As you can imagine, there are lots of fun festivities in the coming weeks!

I hope everyone is having a wonderful and blessed holiday season! We love y'all!!!

Tuesday, December 3, 2013


This Thanksgiving was one for the books. :)
No need to walk you through all the grisly details. Let's just say we weren't well. Not Libby. Not Annie. Not Me. Not Hib. 
 We made it through Thursday. But things took a turn for the worse during our weekend in the mountains with our family. I have a feeling this will be one of those Thanksgivings we'll remember for the rest of our lives. And that's what the holidays are all about, right?! Making memories. Mission accomplished. :)
We're well now. All of us. 
And we're so thankful. In fact, even amidst the nasty virus that ripped through our entire little family. Taking us all down. One by one. I desperately tried to keep practicing thanking Him in ALL things.
 I mean, it was Thanksgiving after all.
 And you know what?

He made it so easy.
 So THANKFUL for all of you!!! We hope everyone had an amazing Thanksgiving!!! And that you stayed well. :) We love you!

Friday, November 15, 2013

We're home!

We've been home. Since Saturday. I've wanted to write and tell you we made it back. And we had the MOST wonderful time. But, as you all know, re-entry is consuming. And nearly a week in, we're getting back into our routine. Of course, I have to thank you for your prayers for our trip. Everything went beautifully. Here and there. We've been basking in the glorious memories. It was nothing short of everything we could've hoped for. It was the kind of luxury you feel a little guilty about. It was that good. We relished the time of refreshment and reconnection. I'm still amazed at how God provided us the opportunity.
And as the sun set on our last night, in my true fashion, I found myself wondering if we would ever be lucky enough to have time like this again. And almost instantly I remembered, our Father delights in blessing us. Big time. He is so good.

Friday, November 1, 2013

Expect the Unexpected Part 2

We saw the doctor this week. He said Libby looks awesome! Her numbers are great.  Her sinusitus is clearing up. Her neck already looks better. Her lips are all stiched and clear. She's feeling well. It's amazing. Really. The pathology reports show there is nothing scary going on as far as bacteria or anything like that. At this point, everyone is assuming the medicine is responsible for a lot of this. And some of the other little ailments are just your run-of-the mill bumps in the road. We are beyond relieved, and so thankful!

About seven months ago, Hib planned a trip for us. He planned it for next week. Our sister and brother-in-law mastermind the entire thing. And it's such a fabulous (and reasonable) trip, we take every opportunity to tag along. We're very lucky. It's once a year. We go to celebrate our wedding anniversaries. And this year, it's both of our tenth anniversaries. Our anniversary was in June. But we thought, Hey, all the better to wait until November when Libby's in maintenance, and things really calm down for us. Turns out, things haven't been calm at all.  And if you had asked me two weeks ago if we would be going on this trip, I would have told you a definitive- no way.

I have been in constant prayer over this trip. Should we go? Did you plan this trip for us, God? Now? Are we really okay to leave the girls? And truthfully, I've searched for reasons to stay. I'm still searching. But, other than my incessant need to attempt to control the details of my life, I can't come up with one. In the nick of time. His perfect time. God has calmed our storm.

Miraculously, we're going on this trip! I can't believe it. I feel thankful. I feel blessed. I still feel a little apprehensive. But I'm thrilled. Would you pray for us? And pray for our girls. And especially  pray for our amazing loved ones who are willing to care of our little ones while we're gone.  They're so excited for us, and were willing to take on this feat with a moment's notice.   Aunt Tara, Mom and Dad, and all of our family and friends offering to step in and help-thank you!!!! You cannot know how much this means to us. We adore you.

This week's turn of events has been easy to embrace. Is He continuing to break me of my love of control, or what!?

Love you all!

Happy Halloween!

Saturday, October 26, 2013

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! 

Thursday, October 24, 2013

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!

Wednesday, October 16, 2013

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!!!

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!