Lila

Lila

Friday, February 6, 2015

Chemo Begins

After a fitful night, we were called down very early this morning for Lila's procedure. Here's our girl in the holding room looking skeptical.


Just after taking this picture we had some drama -- Lila pulled out one of her IV needles and as we were mopping up the blood, she vomited ... a lot. A few days ago she also pulled out her urinary catheter, which we were told probably couldn't happen. That tube was secured to her leg while her arms were in "no no" bags (velcro mittens).

She can be ... headstrong. We think this attitude will serve her well in the coming year.

We got everything cleaned up from the IV+vomit situation and they wheeled her off. The procedure went well and she got her portacath installed for easy chemo administration. They also decided to put in an NG tube (from her nose to her stomach) due to all her recent vomiting. They were not able to do any kidney testing as planned because the tumor was in the way. But overall it was a successful procedure.

We got back to the room and Lila dozed for most of the day. Her big sister Callie came to visit. A Child Life specialist from Vandy helped us explain to Callie what was happening with Lila in age-appropriate terms, and the visit was short but drama-free.

Since her procedure, Lila has asked repeatedly for apple juice and food (a good sign), but we can't give her any because of the NG tube. This evening her requests have increased and are so pitiful. They will be doing her first chemo treatment any minute now and the nurse just informed us that they give a steroid along with it that will make her really, really hungry. We are hopeful that we can get the NG tube out soon so she will be able to eat something. It may be a really long night. [EDIT: The fellow has allowed a few sips of apple juice and a few crunchy treats. Lila's first thought: Cheetos! Now she's wailing, "I need alllll of the Cheetos."]

We have moved! We are now on the oncology floor. They have stricter rules about visits, but we like being here with all the cancer doctors, nurses, and other patients.

Vanderbilt Children's Hospital has been good to Lila and to us. It's hard to believe that on Monday we arrived with just a bump in her tummy. Now on Friday -- multiple tests and procedures later -- we're starting chemo. That took some heavy-duty interdepartmental coordination, and we are very grateful for everybody's hard work. It's clear they really care about their patients as people.

We're also thankful for you. 2015 is going to be a challenging year for our family, but we know we're not going alone. Thank you for your many thoughts, letters, prayers, texts, wall posts, and visits. Sometimes when we're mopping up vomit, I feel my phone vibrate in my pocket and I know it's one of you saying that you're praying for us and love us. We won't be able to respond to every message this week, but they are all meaningful.

6 comments:

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  2. I can't imagine, but I can pray and share with others, who are praying, too. I admire Lila's courage and her parents' strength. LOVE. --Jen Parsons

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  3. You guys are super parents. Callie and Lila are blessed to have been given you and Sarah!

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  4. Just can't fathom what a heavy week it has been. Praying for you 4!

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  5. Praying for sweet Lila and all of you. I just heard the news Thursday when I dropped my little girl, Isla, off at preschool. Isla and Lila are both in Ms. Carol's class. Lila is always full of smiles when I see her.

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  6. Luke, I'm in tears, but that picture makes me laugh a bit and the story about the Cheetos, which Tennyson LOVES too. Who doesn't? If she is that headstrong, then yes, that is something to be grateful for this year. She looks like she's saying, "I'm going to kick cancer's butt".

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