No Chemo For Christmas

 

And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people." Luke 2:10

We ended up in the hospital last week. Libby had croup. She was turning a corner, visibly feeling a lot better, and then she woke up Monday night. Upset. Her little chest heaving as she tried to breathe. So off we went. The doctors fixed her right up, we spent a couple nights, and were home by Wednesday. And because of this, they delayed her next dose of chemo. So we’re not going to have chemo for Christmas this year. Well, that’s if you don’t count the steroids they put her back on for a few of days. The steroids that help with the croup, but make her feel like crap. So, we’re making it to our Christmas festivities, but we’re not 100%.

And we will be getting chemo on New Year’s Eve. Literally, we will kick off the New Year with a blast. Of Chemo. Yes, this Christmas has definitely been different than ones past. But in a way, it’s been one of my favorites. This realization there really is joy, no matter what your circumstances. This Christmas, God is revealing that true joy doesn’t come from the holidays, or family gatherings, or gifts. It doesn’t even come from your happy and healthy kids. Even though I enjoy all those things, and they certainly make me happy. This true joy, the kind that never wavers, comes from Him. Beholding Him. It’s something I guess I’ve known on an intellectual level for some time now. But this year He’s revealing it to me. It’s different. I’m experiencing it. It’s indescribable. I love that He’s doing this right now. Christmastime. It’s just so appropriate. He is a Father who loves to give us everything we need. His Son. His Love. His Peace. His Joy.

Thank you so much for your continued prayers. New Year’s Eve is our next big day. I cannot say it enough. We love you so much.  We hope everyone has a blessed Christmas, filled with much love, peace and JOY!!!

Some Recent Highlights

  

There are a lot of days I feel like I’m counting down the minutes until nap time, and then until Hib gets home. Okay, that’s most days. But not a day goes by I don’t thank God for the incredible blessing of being home with my girls. As crazy as our days tend to be, I’m trying to soak in every minute. I know how fast they go. Annie is almost a year old, and Libby is two and a half. And I’m asked almost everyday if they’re twins-and some days it feels like they’re twins.  They are certainly two peas in a pod. Libby does a pretty good job of asserting herself as the big sister (you know, by pulling Annie’s hair or biting her), but Annie is desperately trying to catch up. Some recent highlights…

The girls have their own secret language. They babble back and forth all day long. Looking at each other dead in the eyes while they chat. I’m convinced they're having real conversations. Libby is really working with Annie. Even at just two years old, she’s qualified because she’s had a lot of speech therapy. We’re constantly having her imitate our words and sounds. So you can just imagine Libby's delight when Annie imitates one of her words or sounds.  She looks at me with wide excited eyes, her mouth opens as if she’s in shock, and she breaks into a beam of satisfaction. She’s so proud of this baby sister of hers who’s picking up on things so quickly.

 

They always want to be with each other. This is how most of our mornings go. Annie finishes her breakfast, and I take her out of her highchair so she can go play. Libby is still eating. Libby watches Annie start to crawl away. Libby looks at me and says, aaaaaall done (she likes to drag out the all). I ask her if she’s sure (knowing she’s not finished, but she wants to go play with Annie) and she assures me she is. I start to take her tray away, she frantically picks up a piece of bacon in one hand, and a handful of cheerios in the other. I look at her without even asking the question, and she says to me again, aaaaaaall done. And off she goes to chase Annie, still hungry, but with enough of her breakfast in hands.

They are very empathetic. If one laughs the other one laughs. If one screams the other one screams. If one cries the other one cries. Libby loves Santa Claus. Always has. We went to see him again this year. She was so excited. This was Annie’s first encounter with Santa and, true to form, she wanted nothing to do with him. She started crying as soon as we put her in his lap. She wouldn’t even look at him. And Libby could totally understand. When Santa asked her what she wanted for Christmas she stuck out her bottom lip, too. Although, she did blow him a quick little kiss to say goodbye.

They are learning, not very well, how to share. Libby is happy to give a toy to Annie, and very quick to take it right back. Annie follows her lead. Libby, despite being on steroids, is very generous with her food. If Annie is out of cheerios, Libby is happy to add some of her own to Annie’s tray. In fact, if she’s eating, she is always willing to offer Annie a bite. Annie, on the other hand, is more of a taker when it comes to food. Whatever I give Libby is in Annie’s hands in a matter of seconds. I’m not sure if she’s supposed to eat Pringles. But she does. And she loves them. I’m pretty sure she’s not supposed to have cow’s milk until she’s one year old, but Libby has introduced her to that, too. 

                                                         (Not her cup)

Yes, Libby continues to teach her little sister everything she knows. She’s teaching her how to wave hi and bye, and clap, and give kisses. Annie has really taken to the kisses. Libby’s once one-sided kisses are now requited. And I’m telling you, there is nothing better than seeing these two lean into each other for a big smooch.

Tis The Season For Miracles

I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name. Isaiah 45:3

This month has been tough. We knew it would be. Libby is in the midst of a miserable phase of treatment. She doesn’t feel well. We’re exhausted in every way most days. And it’s Christmas.  Cue the miracle…

Remarkably, I’m finding myself more readily shifting my focus to Him. He has not always been default. I tend towards control. I like to fixate on an issue, complain about it, worry about it, and pretend I can come up with a way to solve it. That’s what I do. But He’s giving me this gift. And let’s be clear, sometimes I still resist taking it. But He’s whispering to me to lean in. He’s giving me His eyes. And even if it’s for just a moment here and there, it’s awesome. In the middle of complete chaos, I’m able to step back. And He’s showing me there is treasure even here.

This is a season of our lives that, to many, may look dark.  Surprisingly, I’m finding it’s a season marked with much beauty. Although, the day to day ain’t always pretty. It’s a season that has my little ones demanding much of my time, but gives me priceless time to be with them, and delight in them.   Could He be molding me into a more loving and patient mom? A season that has been challenging for our marriage, but nevertheless we’re growing. Could He be refining our marriage? A season that has been littered with discomfort and disarray, but still filled with so much joy. Could He be changing me?  I’ve prayed for all of these things. Specifically. His work is unmistakable. This is a season He is revealing more and more of Himself to me. And I can’t get enough. It’s the absolute best gift. Father, I want to know you more.

Treatment Update

 

We’re two weeks in. Libby’s second treatment was Tuesday, and it was coupled with another IVIG treatment. This was a long treatment day. And I could tell she felt like crap. During the last couple of hours she didn’t want to watch her DVD, she didn’t want to eat, she didn’t want to sing, she just wanted to go home. And it was heartbreaking.

She definitely seems to be in more pain this go-round. She’s more nauseous, And she’s very tired. All of this is to be expected. The doctor told me these drugs are the nastiest ones they’ve got, but they get the job done. So we’re hanging in there. Our next treatment is Wednesday. It will be shorter-praise the Lord. And actually, after Wednesday, we have a little break as we wait for her counts to recover. Then, we’ll start round two. I will say this, it’s going quickly (a perk of doing this phase during the holidays?), and Libby is doing much better than expected. Or maybe, we knew she would do this well. It is Libby. Despite it all, most days she’s as happy as she ever is. It’s pretty humbling.

We’re continuing to pray for God to let this phase of treatment be as easy as it can be for Libby. As pain free as it can be. We’re praying she can verbalize what’s bothering her so we can address her needs, if at all possible. We’re praying to keep reactions to IVIG at bay. We’re praying to keep infections at bay as her counts begin to plummet. And we’re praying this precious little girl gets to enjoy some of this Christmas season! We have a feeling she will.