Neely's Song: January 2016

Hello Team Neely! It’s 7am on a Sunday morning and I am going to attempt a proper update before the rest of the household wakes up and the chaos begins.

First, I wanted to thank some wonderful friends - Derek Ortiz and Vince Saucedo - for putting together an amazing fundraiser for Neely! There will be live bands and a silent auction (with some super cool items)! I can’t imagine how much effort it takes to organize something like this and we feel so blessed that they would do this for our little girl out of the kindness of their hearts. See details below – it’s going to be a blast!!!

I was just reflecting on this yesterday – about how there really is this team of incredible people that surrounds us and keeps us going. More on that later.

Obligatory apology here for not updating this website in any kind of a timely manner. I have noticed that this is pretty common for folks going through an extreme medical situation. We all start off posting a lot and then as time goes on, the posts become fewer and further in between. I know I’ve spent some late nights reading about kiddos in similar situations to Neely and then the posts just kind of stop and there are no more details.

It’s like, in the beginning, you are staring at this empty garden. Someone or something has just come through and completely annihilated everything – it’s devastating. You can sit there often and reflect on the emptiness and hope that something will come along and help you rebuild. Then after a while, you start planting again – a tiny little seed of normalcy. And just when you think something has taken root, another disaster comes. This happens so much in the beginning. Life is in turmoil. Nothing sticks, nothing grows.

Time goes on and you figure some things out. You figure out how to better tend to the seed, the soil. How to keep most of the bad stuff away. Little tendrils of hope begin to sprout and the next thing you know you’ve got a big ol’ garden to tend to. Maybe it doesn’t look like your neighbor’s garden, but it’s full of life and full of beautiful things.

This is our journey. In the beginning, we sat back and watched as our girl went through one disaster after another. We’ve watched her almost die more times than any parent ever should. We spent months in the hospital with our girl going through surgery after surgery and crisis after crisis. Looking back, it was those months that gave us the right tools for our “garden”. For example, back then the idea of doing a sterile dressing change on Neely’s central line seemed terrifying. This is a catheter that goes directly into her heart - not something to mess around with! Well, months of being in the hospital meant that we were in the room when those wonderful nurses would do dressing changes. Once we got home, we decided to do it ourselves. Home health used to do dressing changes, mix IV meds, and draw labs. We do all of that now.

It’s truly the first thing I would tell anyone at the beginning of this journey – learn how to do “the things”. It is scary. It is not easy. It is intimidating. You may stumble through it. Do it anyway.

Things take root and life takes over, as it does. There’s less time to sit back and reflect. We worry less about line infections and more about laundry. It’s a blessing.

It’s also my long, possibly convoluted, metaphoric excuse for why I don’t update more. I’ve got a beautiful garden to tend to and less time to reflect on what it took to get it that way.

Which brings me back to Team Neely. Whenever I take the time to think about how all the little pieces fit together, I am amazed. I have worked at Texas Oncology for almost 10 years and have met the most gifted and kindhearted people. That’s a joy in and of itself, but then I think about how fortunate it is that I have people to call on with lab questions, nursing questions, pharmacy questions, insurance questions, etc. They are dear friends and they truly care about Neely. We would not be here without them.

And then there are the people who can’t do those things, but send us that random “how are you doing?/thinking about you” text (you’d be surprised how much those little pep talks keep us going). The ones who send Josh home with tons of food so that we don’t have to worry about dinner. The ones who randomly decide to undergo the HUGE task of putting together a fundraiser!

There’s also the friends we’ve acquired along the way, that are on their own journey. Mamas you’ve never met, who live 1400 miles away, who will call you at midnight and talk you through the things they’ve learned during their own journey. Mamas you meet in the elevator and know right away because you’ve seen their kiddo’s Facebook page. You bond instantly.

Then there are the people in the offices – the doctor’s office, the home health pharmacy, etc – that know us. They escalate our call. They give us their personal cell numbers or emails so that we don’t have to go through too much bureaucracy to get to the right person. They actually take the time to answer our wacky questions and sometimes even appoint a team of people to work on an issue.

And also, how blessed are we to work for people who are so genuinely interested in Neely’s well-being? The people we work for have been so understanding of how crazy things can get with Neely.

I could seriously go on and on and I wish I could write a lovesong to all the people who make this life possible. Our cup truly runneth over and please know that we are so thankful for all the love, support, prayers, well-wishes, and patience.

But maaaybe you didn’t come to read about mushiness and poor metaphors, haha. So how about an update on the little diva that this website is about?

Neely is 3 ½ and is just as wonderfully whiney and annoying as any 3 ½ year old you know – which is AMAZING. She’s very little for her age – like barely in the 1st percentile on the growth chart. Her 22-month old baby sister is almost the same height and actually weighs a little more. People often ask us if they are twins.

She’s a silly little bundle of energy and can mostly keep up with her sisters. She’s back on 16 hours of TPN, with an additional hour of saline before and after, so a lot less time off “leash”, so to speak. She walks around with her little backpack full of IV fluids and doesn’t really think much of it. It’s all normal for her.

The medical stuff: She’s had a lot of bleeding issues and managing that has been tough. This is most obvious when she is bleeding into her ostomy bag. We think she may have some sort of weird seasonal allergy because when the blood is coming from her intestinal tract, it’s usually sometime between June and November. That happened in 2014 and 2015. This year, once we got past that, she started bleeding from the stoma itself – the opening into her ostomy bag. It was very prone to injury and she would just bleed so much. Her labs were terrible and she required quite a few blood transfusions. She recently had surgery to “re-envision” her stoma. She’s also getting Procrit injections twice a week because her EPO level was so low. Things seem much better now and we’re hopeful that we can keep her hemoglobin up.

Her liver numbers have been steadily increasing. Her bili is in the 6’s now. You can definitely see the jaundice - yellow in her eyes and a little in the skin. This happens because the lipid component of her IV nutrition is harmful to the liver. I think a serious discussion about an Omegaven clinical trial will probably happen with her GI doc soon.

Her kidney numbers are also yucky. She only has 1 kidney and it doesn’t appear to be fully functional We’re not really sure about anything when it comes to the kidney and we’re just hopeful it won’t get any worse.

That’s the super short version, of course. Things could be better, but they could also be a lot worse!

While all this is going on internally, Neely still acts like any other little kid would. If you or I had a hemoglobin of 5.7, we’d likely be in the hospital feeling horrible. My girl? She’s running and giggling through the waiting room while they get her blood transfusion ready. If you or I had a recent surgery to cut down a part of our intestine, we’d probably be asking for more pain meds and spend a couple of days in the hospital. My girl? Within a few hours of the anesthesia wearing off, she asked to sit up so she could play with stickers. She had morphine available every 2 hours and she only needed it once. She was discharged from the hospital the next day. She’s amazing.

Yesterday, she asked me to play some ballerina music, so she could dance. With her curly black hair in a messy bun, her white onesie, and white tights, she looked every bit like a little ballerina. She grabbed the side of the coffee table and kicked her little leg back and said, “look at me mommy!” I suddenly got emotional watching her kicking her little legs and spinning around the room. Look how far we’ve come.

Okay, I have so much more to say, but babies are waking up and I’ve got a house to clean. Thanks for your patience with me and I hope to see you at Neely’s upcoming fundraiser! Love you all!