Wednesday, July 25, 2012
Libby's leukemia is in remission! The nurse called with the results of her Day 29 lab work. There are no leukemia cells in her marrow! This is exactly what the doctors want to see, and these results allow her to remain a "standard risk" patient. We still have the arduous process of keeping these cells at bay, but this is amazing news. Praise God! Praise God! Praise God! Thank you for your continuous prayers-He is continuously answering them!
Monday, July 23, 2012
We had the best weekend. Hib made it home. And by Saturday, our little family of four was together again. We spent a lot of it relaxing. Playing.
One of my best girlfriends was in town and we were able to do a girls' lunch on Saturday. My awesome Aunt Christy and Uncle Sonny came down on Saturday night to be with the girls. And Hib and I had a date night.
Libby seems almost completely back to herself. She’s actually funnier. If that’s even possible. She’s been super communicative. And super animated. She loves talking to me. And while I try desperately to figure out what in the world she’s trying to tell me, she laughs hysterically.
She’s developed a new laugh. The kind where her shoulders move up and down rhythmically. Coupled with her steroid cheeks and belly, it's just too much. And the slightest thing sets her off. If I drop one of her pill bottles, she’s jiggling away. If I tell the cat to hush, she has a fit. If I start laughing at her, forget about it. It is, honestly, one of the best things I have ever heard.
On Sunday, one of our favorite families, the Shelley's, came over. And we finished up the weekend at Libby’s favorite Mexican restaurant.
Needless to say, to have this kind of weekend, amidst the chaos, was amazing. A gift from God. I found myself thanking Him all weekend. Thanking him for the sounds of a full house. Full in more ways than one. We are so humbled to be prayed for by all of you. So incredibly humbled. And the best part-your prayers are being answered. We will never be able to express our gratitude. But I will continually try. I will continually try to express how much we feel your prayers. Thank you.
P.S. We did not get any results from Libby’s lab work on Thursday. I didn't even try to call. I apologize! I will post as soon as I hear anything. I’m wondering if it may not be until we go back to the clinic this Thursday. I’ll let you know.
Thursday, July 19, 2012
We have a big day tomorrow. Thursday. It is our very last day of induction. Day 29. I can't believe this month is over. Tomorrow, we have our first outpatient clinic visit. We'll head over first thing in the morning. Our appointment is at 8am. Thank you, God. Libby will be sedated. She will have her treatment. And the doctors will extract bone marrow. This is the day the doctors are able to find out some important information. They will find out if the treatment is working. We will know if, essentially, the leukemia is in remission. We won't know tomorrow. But we should know something Monday. Please pray specifically for a smooth day tomorrow. And, absolutely, that we are beating this cancer!
Tuesday, July 17, 2012
Friday, July 13, 2012
Here’s the deal. When I got to the hospital the doctors were talking about sending us home. Today. I panicked. I was ecstatic. But I panicked. I want to get home. Badly. But there is a part of me that is nervous. We haven’t taken care of Libby at home while on all of this treatment, yet. And she has an infection. And that adds some additional care. But we want to get home. We need to get home.
I think there were some mixed feelings with the doctors and nurses, too. In my typical type A fashion I began weighing options. I talked to every expert there. About every little thing. I gathered everyone’s opinions. Even our sweet housekeeper who cleans our room-she’s actually given me some pretty solid advice over the weeks. And then, I decided to pray. I’ve been praying. And one of those prayers has definitely been to get home. But today I changed that specific prayer-just a bit. I decided to pray to get home in His time. You see, I have a way of trying to control situations. I know, I know-hard to believe. And I’m slowly, very slowly, learning this control is an illusion. And when I give up the control- you know, the control I never had-I’m letting Him be in control. And it just seems to work better that way.
The nurse came in our room almost immediately. She told me we weren’t going home today. She said everyone agreed to have us stay a few more days. The doctor mentioned Tuesday. And it felt good. Hib was working today, and wouldn’t have easily been able to help me get home. I can’t even conceive how I would’ve packed up our room. My family is out of town this weekend. Annie is in awesome hands with her Gigi and Papa. And while Hib is at the hospital some this weekend, I’ll have some time to run errands and ensure we have everything we’ll need when we do get home. The weekend is nice and quiet at the hospital. I’ll have time to really go over everything with the nurses. (Hello…I’m still type A) We'll be off IV antibiotics. Libby’s counts will have come up even more. Hib leaves to go out of town on Wednesday. A Tuesday homecoming will, in the nick of time, save me several days of around the clock hospital duty while he’s gone. And hopefully we’ll even have Tuesday night together as a family before he leaves. His timing is perfect.
Have a happy weekend!
Tuesday, July 10, 2012
People keep asking me if I’m really okay. I’m pretty sure what they’re implying is that although they know I’m trying to trust God with all of this. That still it must be hard. And they would be right. It is still hard.
At the same time, I sometimes wonder if this leukemia diagnosis may not be as hard for me as it might be for someone else. At first, I thought this because I have a daughter with Down Syndrome. I’ve heard scary medical stuff before. I knew from day one that Libby’s little body would be more vulnerable. I am certainly no stranger to doctors’ offices and appointments. Doctors make up a solid ten percent of the contacts in my phone. I schedule multiple therapy appointments every week.
I’m sure all of the above factors in. However, I think it has more to do with the fact that I’ve been broken before. I have been blindsided by the unexpected. I have had my dreams seemingly dashed. I have felt devastation. I have felt anger. I have felt confusion. I have felt helplessness. It’s not totally new to me. More importantly, I know what can come from brokenness.
God and I have been down this road before. And it was hard. And I let Him hear about it. A lot. And for a time I didn’t even pray. I just complained. A lot. But somehow, in my brokenness, I felt God’s presence like I never had before. In my pain, this world faded and His world came into focus. And I hungered for Him. A hunger that would dull as things became “better”. But enough of it stayed. And I wanted more. Much more. Tentatively, I found myself praying a prayer I was admittedly terrified to pray.
God, I want to know you. Desire you, above all else.
So here I am again. Broken. Stripped bare. Hurting. And He’s not answering my questions. And He’s not guaranteeing me a happy ending. Not in this life, anyway. But in my brokenness, He is near. And He draws me near. And the hunger for Him is palpable. It’s impossible to describe. But I feel blessed.
Am I enjoying it? Not really. Do I believe He’s worth it? I do. Really.
Monday, July 9, 2012
It’s official. We have our first infection. Obviously, this is not good. But it is good we are in the hospital, they are watching Libby so closely, and we were able to begin treatment with antibiotics so quickly. Coupled with the infection, her counts are still low. This makes it hard for her little body to fight the infection. In come the antibiotics. She seems to be in a good bit of pain with all of this going on. But is managing very well with a dose of pain med here and there. Please continue to pray for quick healing of this infection, those counts to come back up, and for this little girl to feel better!
We’ve been taking it easy. Hanging out a bit more in our room. Dealing with boredom by doing lots of eating and sleeping. Is there any other way?
Meanwhile, Annie has been gallivanting around Six Flags! Never mind us, Annie. We’re fine over here.
Thursday, July 5, 2012
Today was day 15, y’all. We’re about halfway home-hopefully! It was treatment day, and as expected the actual treatment was a breeze.
We did have a minor hiccup, though. Libby woke up with a little sore in a precarious place. The doctors suspect a possible infection. Regardless, they are being cautious and treating as such. She started two more antibiotics. Would you believe we are thankful to be in he hospital, and in such capable hands?!
Libby did seem to be in a good bit of pain, today. It was a tough day. It was actually the first time I have requested pain medication. For Libby, not me. Although, I probably would've taken some. By the end of the day she had perked up a little bit. And I got a big smile on the way out the door. We’re continuing to pray for healing, in every way of the word. We’re praying for her pain to subside, and for her to feel a bit more like herself.
Tuesday, July 3, 2012
We had an uneventful weekend at the hospital. And for that, we are thankful! The highlight had to be the visits from Libby’s cousins. Hadley and Walker visited us no less than three times in two days. We wouldn’t have it any other way. Mind you, when we’re home we see each other nearly everyday. You can imagine what an adjustment this hospital stay has been for Libby in this regard. Thank goodness for Facetime. When the phone rings Libby gets her wide eyes, a big smile, and shrieks with delight. If I miss Hadley’s call (or five calls, rather) I’ll get a text from her shortly after that reads ginnyfactimenow. You’ve got to love a five-year-old who knows how to text, but doesn’t know how to use space between her words. Hadley and Walker are, without a doubt, one of Libby’s greatest blessings.
The doctors continue to assure us that Libby looks fantastic. Her blood counts will continue to drop and then they should begin to recover. Her treatment this Thursday should be nothing compared to the last two Thursdays. In the meantime, she is ever the trooper. She most likely doesn't feel well. She’s not 100% herself. But she sure doesn’t do much complaining.
True to form, Libby is somewhat of a celebrity in the hospital. We’ve been warned several times that it’s very likely she could get stolen in the middle of the night by any one of the staff. The nurses tell us it’s a race to the board everyday to try and sign up for Libby. It never ceases to amaze me, the response this little girl can elicit. The way she brightens everyone’s day with the incessant kisses she blows without bias. No matter what.
Have a wonderful Fourth of July holiday!