Majic Messengers, 210 S Bass Rd (2026)

17/11/2021

(Part 3 of 3) - “I hope people remember Olivia too. I hope — no, I know — she makes a difference in the lives she touches. Everyone she meets, it seems, ends up wrapped around her little finger. Even when she was born, she was making a difference; the hospital we were in happened to be a teaching hospital, and I remember all the students watching us because there were so few babies born at 23 weeks. She has put people on their knees before that have never been on their knees for anyone. I even have a picture of her with an outlaw motorcycle club that fell in love with her. She’s changed lives.

Lord knows she’s changed mine. She’s taught me strength. She’s taught me grace. She’s taught me how to keep faith. I always had faith, but I remember the nights when I was standing by the incubator asking God why. Seeing how she goes into each new day just knowing it’s going to be better than the day before, she’s changed me. She’s changed all of us.

I know the odds. Only ten people in the world have ever experienced what Olivia is going through and none of them are still with us. But I don’t want to hear she is going to leave us. The day she tells us she’s ready we’ll have that conversation, but today I want her to live. I want to let her be a kid. I want her to know how much she’s loved, to enjoy today, to look forward to tomorrow, and to never, ever give up.

This year it’s just going to be us for the holidays. Because of COVID-19 we can’t really risk much more than that. But even still, we’re going to get to see the magic in her eyes one more year. Blessings like that make me believe that she’s going to be the one in 10. She believes it, and so do I. That’s enough.”

📍 Give Kids The World | 📸 /ig
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17/11/2021

(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

17/11/2021

(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
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16/11/2021

After watching his 9-year-old daughter beat childhood cancer, father of 5, Jimmy Riley, talks about never giving up and how your story is meant to be a testimony to others. "You're going through this for a reason. Get up, push through, and drive on, and remember there's always someone out there that loves you."

📍 Give Kids The World
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16/11/2021

Dad, Jimmy Riley, talks about the moment his daughter was born, what he wants to do before he dies, and how to choose happiness despite devastating challenges.

📍 Give Kids The World
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15/11/2021

Wish child, Sa’Nyla, who just beat childhood cancer, gives advice on never giving up, staying positive, and finding happiness. She likes to make dancing videos, laugh at her brother’s jokes, and eat lots of ice cream. When asked what makes her happy, her answer was simple – love. 😭❤️

📍 Give Kids The World
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12/11/2021

(Part 3 of 3) “As of now, Piper’s cancer has been in remission for 19 months, and now hopefully for the rest of her life. Remarkably, other than the scar on her back, there have been no lingering effects. Her speech development is perfect, and she’s shown no signs of hearing loss. Actually, she’s developing into something of an adrenaline ju**ie; she’s really developing a liking of rollers coasters. We are so thankful, and I like to think that her fight, even this early in life, has changed her, has given her something like a superpower that’s going to do some good in this world.

Piper’s experience has changed us, too. It opened our eyes to the good around us. It has made us want to pay it forward, to give back where we can. In some ways, we actually feel bad we never noticed it all before. On our hospital visits, we all too often see families and children that are far worse off than we are. We want to make volunteering, and giving back, a part of our lives to show others all the wonderful things we now see. You are never alone, and we want to dedicate our lives to helping others realize that.

Richard and I aren’t big religious people, but we do believe in praying out loud. I know the thoughts that go through parents’ minds. What kind of God would let a child get sick? But I want these parents to know they are loved. We love you.

When hope feels lost, I want you to say that to yourself. You are loved. You are loved by us. You are loved by your family. You are loved by people that you may not even know, that may just send their prayers to you on a Facebook comment. Feel it. Embrace it without shame. Use it to cherish every waking moment and make the most of the time you have. This life is a gift. This very moment, right now, is a gift.

We love you. Please, remember that.”

Via: Give Kids The World
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12/11/2021

(Part 2 of 3) “I remember everything I felt at that moment. We were heartbroken. No child should be sick. They did nothing wrong. Piper did nothing wrong. She’s my ray of light, my fighter. When we first started chemo, Piper hated needles, but now she has no issue with them. Sometimes when we get into the car just to go to the store, she looks at me and asks, “Doctor now?” When the doctor needs blood work, she’ll smile and hold out her arm for them. A child deserves to be healthy, I believe that. But we didn’t get that. Piper didn’t get that, and no matter how hard I might pray that God let me take her place, I can’t.

Every day was an experience staring into the unknown, scared to death of what might happen next. We were required to constantly monitor her blood work for the next five years. One bad report, and our lives would change forever. And even if that report never comes, what about what’s already happened? I thought about what children might say about Piper’s scar on her back, the teasing she might experience. I thought about what consequences she might have to deal with throughout her life, all for something that she never deserved to have happen to her.

But we never lost hope. Never. Even at times when we saw the worst of what life can offer, we also saw the best. The outpouring of support we’ve experienced has been incredible, from our family, friends, doctors, even strangers. And in some ways, we’ve actually got to play a small part in something bigger than us. For example, Piper has gotten to take part in a study for SCTs with the hope that researches will get to find some answers for families down the road so they don’t have to go through what we did.

We also learned just exactly who are daughter really was. We learned that she is a fighter. Nothing in this world will ever make her back down. She will never give up, never stop advocating for what is right and what she is passionate about. Seeing the kind of woman she is growing up to be right before my eyes give me hope — no, certainty — that no matter what happens everything will be okay.”

Via: Give Kids The World

12/11/2021

(Part 1 of 3) “What can you say to someone that has given up hope?

This is a question that I was asked to answer, and frankly, my husband and I were floored. How can someone even ask such a thing? How can such a possibly even exist in one’s mind? Are there really people out there in a position so dark they are considering an existence without the possibly of hope?

It was my husband Richard who answered first. He said the first thing that came to his mind: “We love you.”

We know how it feels to see your child suffer. My amazing daughter Piper was dealt a bad hand before she was even born. Twenty-six weeks into my pregnancy, she was diagnosed with Type IV sacrococcygeal teratoma, or SCT. Essentially, SCT refers to a tumor growth that appears on Piper’s coccyx/tailbone, with Type IV meaning that was internal and had the highest rate of malignancy. When she was only four days old, she had surgery to remove a tumor the size of a golf ball, along with her tailbone. Unfortunately, during surgery, there was a rupture that leaked out into her body. Our doctor, who is wonderful, flushed out the area as best as he could, and even though he was as aggressive during removal as he felt he could be, the following pathology report came back with positive tumor markers on everything that was removed. If the tumor came back, he told us, it would probably come back before Piper was five.

She was 15-months old when it reoccurred.

On December 2019, an MRI found what we dreaded. The tumor was small, about the size of a pea, but it was there. It was also in one of the worst places it could be — right under her belly button on her spine.

Theoretically, it could be removed, but it would be an exploratory surgery that would almost certainly leave her with life-long side effects. The best option was to install a port and begin chemotherapy. The risks were significant, including potential hearing loss and an increased susceptibility to other cancers when she is older, but it was the only realistic option left.”

Via: Give Kids The World

09/11/2021

(Chapter 3 of 3)
“Three months after her last treatment, our worst fears were realized. Lana’s tumor behind her chiasm was the largest it had ever been and was pushing on her hypothalamus, causing her headaches, nausea, and balance issues. The scale of the growth even shocked our doctors. They said that if we wanted to do something with Give Kids the World, we needed to do it now before the tumor becomes fatal. Right now, at this moment, we are trying to make the best of the situation and not think of the sad things.

But sometimes I can’t help but think of the sad things. I can’t not. I am trying to be happy, but I am so scared. A part of me feels jealous of the other families around me, because their kids are getting to live their dreams with their conditions in remission. They are getting better. But we are here because we are fighting death.

But you know what? Even now, looking at my child and knowing time is short, I find myself thankful and full of love. I have learned in the hardest way to not take life for granted. Before Lana, I used to be a neat freak. I was highly organized; I lived my life through the lists I’d make. Everything had to be planned. But now if I’m doing the dishes, when my little girl asks me, “Mommy, do you want go to play Barbies?” Instead of saying ‘just a second while I finish,’ I say, ‘let me dry my hands.’ I’m never too busy. Nothing is ever too important to put it in front of the things that really matter. I refuse to take a single second for granted. Despite so much sadness, it makes me happy knowing that I can now let life go and make the most of the moment that life has gifted me with.

For those who may be experiencing tragedy, who may be or may one day be feeling what I’m feeling, remember to play Barbies when asked. Remember to make the day, the minute, the second count. My daughter taught me that, and that is something I will cherish forever.”

Via: Give Kids The World
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09/11/2021

(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
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09/11/2021

(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
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