Majic Messengers

(Part 2 of 3) - “Olivia’s pulmonologist once told me something I’ll never forget: “She writes her own history.” I’ve come to truly believe this. This is why we haven’t had a conversation yet about what the future might hold. We don’t want her to be defined by some predetermined fate. Olivia defines her destiny. We want her to write her story.

I think she’s internalized this, too, even if I haven’t told her to. There’s no doubt about it, she’s bossy. She’s in charge. When she’s at the hospital, she calls the doctors “assholes.” Don’t get us wrong, we have wonderful doctors. But at the same time, the doctors are not God. They don’t know everything. When Olivia was born, they recommended that I give birth and let her die on my chest. It’s good to listen to them, but Olivia knows implicitly her life is hers. No matter what, she’s in control.

Olivia actually handles it better than I do sometimes. There are times where I just have to cry to get it all out somehow. After the PBS diagnosis, I actually had to look at her and say, “Okay, Mommy needs to pull into the gas station for a minute.” I went into the bathroom, had my cry, and then walked out. And there were other hard times where I would lay next to her as she slept, holding her hand just to make sure she still had a heartbeat.

In these times, a little kindness can go a long way. People forget this. I remember in the hospital one night a nurse sat a Mountain Dew on the nightstand for me. Another nurse once put Olivia’s hair (when she had some) into pigtails for her. One day after coming home from the hospital we discovered someone had cleaned our house for us. There’s an older lady I know who sends Olivia and her little sister Everly a card in the mail every three months, complete with little stickers. Not too long ago a kind soul left us a couple bottles of wine on our doorstep. I will always remember these little things. There’s still good in the world.”

📍 Give Kids The World | 📸 Chris Glenn

(Part 1 of 3) - “Olivia is a true miracle child. At birth, she weighted only 1 pound, 4 ounces and was given less than a 5% chance of survival. From head to toe, she was just 12 inches long. According to our doctors, she was in the .5 percent size range of kids her age. As far as they know, she’s the smallest child ever born in the state of Indiana to survive. In 23 years working, the doctor who delivered her said he had had never seen a baby cry who was born under those circumstances. Even then, she had sass.

When Olivia first got to come home six months later, she had a variety of diagnoses including cerebral palsy, chronic lung disease, and patent ductus arteriosus (PDA) — a congenital heart defect. Then, six months after that, she started having seizures, which led to a diagnosis of Lynnox-Gastaut Syndrome – essentially meaning you have epilepsy that can’t be controlled by medication. If that wasn’t enough, just over half a year ago we got another gut punch with a diagnosis known as PBS (Pilarowski-Bjornsson Syndrome) – leading to another life expectancy estimation of 6-9 months. In literature, there are only 10 people in the whole world that have had this diagnosis, and none of them have survived more than a couple of years.

Looking at her today, I know the first thing people think. Everyone can tell she’s sick, especially after she lost her hair. We actually never cut it; she had beautiful hair almost as long a she was. But after you just talk with her for a minute, watch her interact with the world, you remember that she’s still just a little kid. No matter what is going on in her life, she hasn’t changed. She wants to be Elsa when she grows up. She’ll be the first kid to dive into a fresh pile of mulch, no matter what she’s wearing. She gets to be a cheerleader once a week and even got “dancer of the year” at her recital for her strength and courage. Yes, she got a raw deal in this life, but she doesn’t know that. Of course, she knows she’s sick, but at the same time, she doesn’t know anything different. It is her life, and she’s committed to making it her own.”

📍 Give Kids The World | 📸 Chris Glenn
-

(Chapter 2 of 3)
“Three months later, we did an MRI to see if any of the tumors had grown, and we found an active tumor on the chiasm – the tube that connects your eyes. That’s when we knew we had to begin treatment. The first treatment at St. Jude’s lasted about a year, but had little to no effect, so they started a second drug. And after 6 months on the new drug, an MRI revealed that the tumors were in fact still growing, with an even larger tumor growing behind the chiasm.

With few options left, we later traveled to Memphis to get a second opinion. Their MRI revealed the tumors were still growing, which at that point, they recommended us to be put on a new drug that was still in the trial phase. Each treatment when administered required us to spend three nights at the hospital to see if she got sick, and if she did, the stay had to be extended for two weeks. This whole time I essentially wasn’t working at all, and as a single mom with no support, it was really, really hard.

But through the heartbreaking struggles, we caught another glimpse of the kindness in people to help us. We were lucky enough to be recognized by a company called, Go Shout Love, which told Lana’s story and asked people to purchase items throughout the month — all the proceeds of which went to us. In our darkest time, we got to see the best the world had to offer. I’m so thankful for that.

The experimental drug Lana was put on seemed to work very well at first, but it came at a price. It was the most wonderful drug, but it was also the worst drug. Over two years, it did the most horrible things to her body, but yet, the tumor was becoming less active. And then there was the condition that came with the drug: no matter what, after the treatment ended, Lana could never go back on that drug again.”

Via: Give Kids The World
-

(Chapter 1 of 3) “My daughter Lana, my world, has just turned four. Some of her favorite movies are Frozen, Monsters Inc., and Over the Hedge. If I had to use a word describe her, I would use “bossy.” It fits! She’s been in and out of the hospital since she was a newborn, and as a result, she knows exactly what’s going to happen, when it’s going to happen, and when she wants it done. She’s in charge – her body is her body, and no one is going to tell her what to do with it.

Shortly after her birth, Lana was diagnosed with Neurofibromatosis type 1 (NF1). There is a lot that comes with this condition, but essentially this means that tumors can grow on any nerve in her body at any time. And since nerves are everywhere, no part of her body is off limits. The first tumors we found were behind her eyes on the optic nerve. They were so compacted we couldn’t count them all. As scary as that was, there was a chance that none of these tumors would become active or grow. But unfortunately, this wasn’t meant to be, and as a result, we ended up spending a lot of time in the hospital.

At this time, however, we witnessed a miracle: with the help of our social worker, the Doula Foundation decided to make an exception for us and extended their help beyond Lana’s birth for a full year. At a point when I was basically living at the hospital, they were there with me every step of the way. They would play with Lana while I slept, cooked while I worked, kept Lana company while I sorted through mountains of paperwork. They were complete strangers, but I am deeply indebted to them. We even got to share Lana’s story as part of their fundraiser – it was magical.” via: Give Kids The World
-