Roid Rage

                                                                           Post Rage
 

Prayers were answered today! Libby’s treatment went beautifully. She had no complications with this drug. The morning was nice and quiet. We had a visit from Grandmamma and Granddaddy. We went to music class. The OR was on time. The procedure was quick. And she was back with me in no time. Praise God!

There is one other prayer I will now be lifting up. Libby is on steroids. Everyday. For 29 days. Apparently, that’s a lot of steroids for a little girl. They told us they might make her a little crazy. And they told us they would make her very hungry. But we haven’t really seen any of that. Until now.  Evidently, the steroids plus no food for almost 24 hours is the ticket.

Hib and I are big eaters. And we come from families with big eaters. And I’ve never seen anything like this. My 20 pound Libby. Shoving fistful after fistful of Cheerios in her mouth and crying because they just couldn’t fill her up fast enough. Really crying. As concerned as I was that she truly could have choked, I found myself shoving a few more in between her fistfuls so that she had four fists working instead of her two. If she dropped a Cheerio, she would cry harder, frantically searching the bed for it. This went on for an hour, with various different foods. She ate the entire hour. Moaning and groaning, trying to satiate her little belly.  I could tell when we had made it. Her chewing slowed. Her eyes kind of glazed over. She looked at me and giggled. I’ve been there. And I’m praying for an early morning procedure time next go round. 

PS Happy Anniversary, Hibbie! I love you so much, and I'm so proud of you. Thanking God for you everyday.

Thank you, Aunt Brooke and Aunt Richelle for loving on Libby and letting us have a wonderful night out! 

Treatment Day

                                                             We did finally get a bath...

                                                                   And it felt so good!

Thursdays will be Libby’s treatment days.  She gets medicine everyday, but Thursdays will be the days that we actually go into the clinic for treatment. We obviously don’t have to go to the clinic tomorrow, because we are still in the hospital.

If you will, please pray for us particularly on Thursdays. Tomorrow, Libby will be getting another lumbar puncture to receive the drug she needs. Please pray things go smoothly. She has not been exposed to this drug, yet. Please pray there won’t be any complications. She will need general anesthesia, and the procedure is not scheduled until 2pm. She will not be able to eat or drink. Please pray for a swift easy morning. Please pray for all of our doctors and nurses. We are ever so thankful for them.

And while you’re at it, if you would please pray for a sweet family we have already met. They have a three-year-old little boy with ALL, and got some tough news this week. Lots of information is gathered and unveiled during this induction phase. In the end, this data gives the doctors a better gauge of how you are responding to treatment. The news they got wasn’t exactly what they had hoped. Please pray for continued healing for this little boy, and for peace for his entire family. We know God has them in His hand.

Where's Annie?

 

After How are we doing, the question we are getting the most these days is Where’s Annie. Exactly. Where is Annie? I literally have to stop to ask and remind myself some days.

Honestly, the hardest part of all of this has probably been the separation of our family. Especially since we’ve only been our new little family of four for five months. It is hard to be apart. I’m with Libby, then Annie. Hib is with Libby and sometimes Annie, at least for car rides. Hib and I are rarely together. It’s totally nuts.

Right now, I’m spending days at the hospital, and evenings at home with Annie. Hib is spending his nights at the hospital (I knew I married him for a reason) and juggling work during the days. One thing is for sure, we could not do this without the unbelievable family and friends that we have. I may have to remind myself where Annie is, but I never have to remind myself that she’s better than okay. Her Grandparents and her Aunt Brooke have first dibs, and they will rarely give her up. But every person I have talked to over the past few days has offered to take care of her for us. I’m not kidding-every person. And it’s not just offers to take care of Annie. It’s continuous offers to bring dinners, to go grocery shopping for us, to mow our lawn, to take a hospital shift for us. It’s inspiring notes of encouragement. There have been endless gifts for Libby, gifts for us. We have friends who want to start fundraisers.

We’re consistently reminded that we may have to go through this, but we certainly don’t have to go through this alone. The outpouring of love and generosity is overwhelming. No, it’s more than overwhelming. It’s bigger. It’s Him in all of you.  I feel like if I could see God. Watching all this. I’d see Him smiling; His heart swelling.

Love one another as I have loved you.  

We love you. We thank you.

And those of you that have offered- watch out. A month is a long time, and we may have to take you up on some of your offers. You can’t hide now.

How are we doing?

 

Today, I asked the nurse practitioner when we would have been going home if they weren’t being extra cautious with us. She told me it would have been yesterday. Yesterday. Wow. Truthfully, I don’t know that we would have been ready.

The good news is that we are on day 5 of this month long induction phase and everything seems to be going really well. The bad news is that we are on day 5 of this month long induction phase, and Libby is a two-year-old. And she is already bored with her hospital room.

We’ve watched Yo Gabba Gabba! until we’re both so over stimulated we’re both ready to cry. We’ve read countless books. We sing. And we’re able to practice lots of our speech therapy. She has seemed to master using the word yes, which sounds more like sssssssss.

Libby, do you want to watch Yo Gabba Gabba!?

Ssssssss.

Libby, do you want to sing with Mama?

Ssssssss.

Libby, do you want to Facetime with Hadley?

Ssssssss.

No one activity seems to have much staying power, so we’re trying some things. We got one of those ABC mats you can put on the floor, and tried to create a nice sanitary place for her to play with a few of her toys. She quickly realized it was much more fun to throw all of her toys off that designated space and crawl after them on the not-so-sanitary hospital floor while towing her 40-pound pole with her IV behind her. (Yes, the IV that is attached to her port that has been placed in her chest under a layer of her skin.)

We tried to go for a walk in her little wagon, but mind you I had to pull her in the wagon and tow the 40-pound pole around with us. There is a way to secure the wagon onto the wheels of the pole, but every time you hit the slightest bump (never mind getting on and off the elevator) it will come unhinged. We spent most of our time blocking entire hallways or elevators with the pole and the wagon fixed in some sort of inexplicable way in which I could basically get none of the wheels on either the pole nor the wagon to function whatsoever. I started to feel really badly confining groups of people in elevators.

When we did manage to move, Libby proceeded to throw all the toys I let her bring out of the wagon over and over again. I usually didn’t realize something was missing until it was about 50 yards behind us, and so back we’d go to pick it up and set up our blockade, again. Libby thought this game was hilarious, so I guess on the up side I did find something to entertain her.

There was one nice stretch where amazingly she didn’t throw anything out, but I quickly realized it was because she had occupied herself by basically flossing her teeth with her IV tubing, which I’m pretty sure they frown upon.

We finally decided to head back to the room after she managed to knock over her milk and it leaked out the holes in the bottom of the wagon continuously as I wheeled us back in the direction of the room. I’ll be honest with you; I was so embarrassed I didn’t even tell anyone. I just pray no one slipped on it. Needless to say, we spent the rest of the afternoon in our room watching Yo Gabba Gabba!

What happens with Aunt Brookie during naptime...

ALL Good

Libby has been diagnosed with Acute Lymphoblastic Leukemia (ALL). The prognosis for this type of leukemia is very good-praise God! She had surgery on Thursday to have a few procedures done, and receive her first dose of chemotherapy. Everything went well! They were able to place her port (through which drugs can be injected and blood samples can be drawn many times), and get an even better look at what we’re dealing with in terms of the leukemia. And, so far, all good! Nothing was seen in her spinal fluid, her bone marrow has significantly less cells than often seen, and her counts continue to look good.

We are currently in what is called the “induction phase”. It is one of the more intense phases of her treatment, and lasts about a month. Typically, you actually do go home during induction, and then have weekly clinic visits. However, because of Libby’s prior infection, they are being extra cautious and plan to keep us at the hospital until her counts fully recover. This may or may not be the entire month, but we’re planning on a month, and hope to be pleasantly surprised if we get to go home early!

Our understanding is that the couple of months that follow are mild compared to the first month, followed by another intense phase, another mild phase, and then finally we’ll enter the maintenance phase. So, we’re looking at weekly outpatient clinic visits for the first six to eight months. If we hit a bump (a fever, sickness, low counts, etc.) we may have to be hospitalized for a few days here and there. The maintenance phase begins after the six to eight months, and will consist of monthly outpatient clinic visits. Apparently, the maintenance phase will become our new normal, for about two years. Whew.

Embracing All

 

She does have leukemia. The words came out of the doctor’s mouth and I was instantly taken back to the day Libby was born. She does have Down Syndrome. It’s amazing how drastically your life can change with a single sentence. I remember how scared we were that day two years ago, but even more, I remember how quickly God dissolved that fear.  The early days were tough, and I was angry with Him, but He was everywhere. God knew all of this before she was born; it was part of His plan. This perfect child, designed perfectly for us, who we fell more in love with than we could have ever imagined.

So here we are again, and this time it’s a leukemia diagnosis. It sucks. It’s scary. But it’s okay. We felt it more quickly this time-almost immediately. God is near.

We continue to strive to embrace it all, everything He gives us. Sometimes it’s really hard, like now, when we feel more than ever we’re on a path we would never have chosen. With that being said, we are also encouraged more than ever because it’s so clear it’s not ours- it’s His.  Ultimately, Libby is not ours- she is His. And He loves her even more than we do.

Hib says as hard as it is, he can’t think of a better person to handle this than Libby. Try as I might, I haven’t come up with a good argument. There has been no one in this world who has had a more profound impact on my faith than Libby. Here she goes again.