medicine

Meet My New Friend Aria

Every child deserves to be healthy. They don’t smoke, they don’t drink, and they certainly do not welcome cancer into their lives… It just happens.

Hearing the words, “You have cancer” is horrifying. But hearing “Your child has cancer” is even worse. The parents of cancer patients carry heavy hearts.

Today I had the honor of meeting Aria, a 7-year-old cancer survivor, and her mother.
ImageAria woke up with a twisted tongue when she was just 5-years-old. Her parents, both physical therapists, knew that something must have been extremely wrong. They rushed her to the closest hospital. After doing an X-ray, her doctors found a tumor in her brain. Her parents had the option of either taking her to a local Syracuse hospital or to St. Jude Children’s Research Hospital in Memphis, TN. They chose St. Jude and never regretted the decision to do so – not for a hot second.

Aria’s first trip to St. Jude was heartbreaking for her parents. When they boarded the plane, her mother saw a boy Aria’s age with scars covering his bald head. She instantly broke down in tears, “I kept thinking, ‘That’s going to be Aria.'”

After the plane landed in Memphis, they travelled the St. Jude in the hospital’s complimentary shuttle. The young, bald boy and his mother ended up sitting next to Aria and her family in the bus. The boy’s mother started to cry and told Aria’s mother, “When I saw you crying on the plane, I hoped… I really prayed that you weren’t going to get on the shuttle… I really did.” They both found comfort in each other, shared their stories and became great friends. (Unfortunately, the young boy passed away three months later.)

As soon as she reached the hospital, Aria had a few tests done and went to bed. That night, life-changing decisions were made. “The doctors never want to put a child’s life at risk. It’s always about what’s best for the child at St. Jude. And if anything could harm them, it just isn’t done,” her mom said. The medical professionals at St. Jude had never seen a case like Aria’s. They wouldn’t touch the tumor until it grew larger. They sent Aria’s family home and told them to return in 3 months.

On her second visit to St. Jude, Aria was told that she only had a few months to live. They found that the tumor was surrounded by liquid and had been growing in her neural stem. This is rare. 

Luckily, her doctors removed her tumor with fewer difficulties than expected. But, the nerves on the right side of Aria’s body were damaged. She also had to change the hand she wrote with and she fell behind in her education after missing 90 days of school. But, who can complain when she’s alive, right? Now, her parents do physical therapy sessions with her and with each passing day, they see improvement.

Her case was special, and she too is a very special girl. She’s a survivor, a fighter and an inspiring young woman. After two surgeries and endless support from St. Jude, Aria was able to be visit my sorority Delta Delta Delta today. The Philanthropy Chair Chloe Font threw Aria a perfect princess-themed tea party. When I asked her what she loved most about coming to TriDelt, she smirked and mumbled, “The cookies!” SHE’S ADORABLE.

None of this would have been possible without St. Jude and the help of Delta Delta Delta’s fundraising over the past couple of years. In November 1999, TriDelta made St. Jude Children’s Research Hospital it’s national philanthropy. In 2005, TriDelta raised $1 million to build the hospital’s Teen Room, a room filled with board games, video games and other fun things (Fun fact: No one over the age of 18 is allowed in the room). In 2006, St. Jude asked TriDelta to raise $10 million in 10 years. We blew their expectations out the water by meeting the $10 million fundraising goal in 2010. IT ONLY TOOK FOUR YEARS. In 2010, we were asked to raise another $15 million in 5 years. Guess what?! It only took TriDelta 3 years and a half to meet that goal.

That’s amazing.
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We’re not only saving lives at St. Jude but we’re also saving lives everywhere else by funding breakthrough research. We’re essentially helping doctors find a cure for cancer.

St. Jude gives Aria’s family and many others ENDLESS support. They pay for everything so families are able to focus on the most important thing: providing love and support for their child without having financial stress. It costs $1.9 million per day to run St. Jude and no family ever sees a bill. Aria’s parents have tried to pay St. Jude back and the hospital will not accept their money by any means. St. Jude pays for their housing, food and air fare. They even pay for extra baggage fees in the airport.

St. Jude is a place where everyone fits in. Aria was given a home – a place where she has friends who are going through a similar experience to her. Being a part of this is indescribable.

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Help Dani Help Others

I know how scary it is to have something wrong with your body without actually understanding what it is. Knowing that someone else in the world shares the same or a similar experience as you is extremely comforting, but very rare in some cases.

Luckily, the Internet has encouraged breakthrough support for those suffering with rare illnesses and diseases. Let me tell you, this can make a HUGE DIFFERENCE to those whose lives are at risk.

After a gruesome ATV accident in the Middle Eastern desert, a friend of mine Danielle Cosgrove suffered an injury to her leg which called for an amputation. After many surgeries, the doctors were able to save her leg. But due to severe nerve damage, she developed CRPS/RSD (Complex Regional Pain Syndrome), in which her body helplessly goes through Chronic Neuropathic Pain. In other words, for every little bit of pain we cry over, she feels it 100 times worse.

When she was first diagnosed with her disease, she had no idea what it meant. She, like everyone else, turned to Google for answers and discovered that there was little to no information on CRPS/RSD. And the information that they did have on blogs and forums was misleading and extremely negative. Dani has taken the alternative route by finding a way laugh through her pain. She has done remarkable work to positively spread awareness about her disease with the use of social media.

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She plans to take CRPS/RSD advocacy to the next level, and has already begun to do so with her blog, TheProject3x5. She was just nominated for a scholarship to marieforleo’s B-school for modern entrepreneurs. She made a video about her experience in hopes of winning the scholarship. This will only make her dream come true by spreading awareness for those suffering with her disease–providing a helpful hand that was not available to her.

By viewing, liking and positively commenting on her YouTube video, the greater the chances are that she will win the B-school scholarship.

Sharing is caring! Spread it around on Facebook and every other social media platform (including Twitter). Please make sure that however you decide to share, you put:

1) the hashtag – #winBSCHOOL on it
2) her name (Danielle Alexis Cosgrove)
4) the video link – http://youtu.be/HdMCg7y9Hk0
3) and then this link as well – http://joinbschool.com/

The Untold Ending

If you read my blog from beginning to end, you would realize a huge chunk of my story is missing. I never wrote about leaving the hospital. 

Every time I think of the last 5 days I spent in that jail, I tear up.

I couldn’t write about it. I couldn’t even speak about it.

I couldn’t find the words to express freedom and joy. How do you describe something that is just so damn sweet? How?

For those of you that know me, and even those who do not, you know that I’m very open. However, speaking about leaving the hospital has been something that I’ve kept to myself. It was such an emotional time and I will never be able to explain it perfectly, but I guess this version of it will have to do.

Here goes…

The untold ending that brought a new beginning:

                                        

13 DEC., 2013

It’s been a week since surgery. We haven’t heard a word from the pathologists.

Cool.

                                        

15 DEC., 2013

It’s 6:30 a.m. and there’s a knock at the door. Ah, they’re on time – as usual.

Every single morning at exactly 6:30, two or three of Cerf’s nurses check up on me. It’s SO early and I wish they’d let me get some damn sleep, but I quickly open my eyes hoping to see my man, Dr. Cerfolio, with the rest of his crew (I haven’t seen him since surgery. He went to complete his master’s degree in Orlando, FL, but he’s back – finally!). 

He’s not here though. I feel sorta sad but I get over it quickly. There are greater matters at hand.

“Any word on the pathology?”

Silence.

“Not yet.”

                                        

16 DEC., 2013

It’s noon. There’s a knock. No one walks in or opens the door.

Weird. 

Dad gets up and does the job.

Cerfolio and his ENTIRE team are standing by the door. Casual.

I can’t read his face, and for the first time since I’ve met this handsome, Italian man, he’s not smiling.

“Well… We still don’t know what it is… We will probably never know… But, what I can tell you is that there are no signs of malignancy…”

Dead silence filters the room. We’re just listening to him blabber on… Or hearing would be a better word to use. I pick up faint mumbles but nothing is clear or makes any sense.

Mom nods.

Dad nods.

Aunty Christine nods.

“Teresa,” Cerfolio calls my name and I snap back into reality. “You can leave the hospital tomorrow and continue life as usual.”

I have no words. I just nod.

He swoops me into his arms and whispers, “I love you. You have to tell everyone your story. You have to tell them.”

I nod and I hug him back. He gives me a kiss on the cheek and leaves.

As the door shuts, the silence breaks with mom and dad’s cries. They just tightly embrace each other and cry.

I silently sit and watch them. I don’t know if to smile. I don’t know if to cry. I don’t know what to do with myself. I can’t even move.
There are no words to describe this.
There are no words.

Aunty Christine starts choking back her tears and does a really cute dance…Well, that does the trick.  I begin hysterically crying. Bawling is a more appropriate term.

Dad looks puzzled. “No smiles? You should be smiling!”

I can’t even look him in the eye. I keep crying. I’m struggling to catch my breath.

This feels surreal. Up until minutes ago, I thought I was dying – I genuinely thought there was no hope for me. The past two months have been a complete and total nightmare. A never-ending, dark tunnel. And FINALLY, there is an end to this shit and there’s a light somewhere.

My parents call my grandparents, my uncles, my aunts, my cousins. The phone doesn’t stop ringing. They must have spoken to 30 people so far, and I still haven’t stopped crying.

Relief. Relief. What a freakin’ relief. 

I am crying because I am happy. Happy is an understatement. The fact that I don’t need to count my days is such a relief.

***

I finally catch myself a few hours later.

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Dad has taken it upon himself to break the law because, well, why not? This is definitely a valid excuse to drink!

Homeboy thinks he’s cute. He smirks and takes a swigs out of his “Starbucks” cup.

He has everyone laughing, which is liberating – finally, a genuine laugh.

I haven’t felt this relaxed in weeks although you would have never known that I was sick or upset. I had a smile on my face 24/7. I put up a front for the people that loved me the most – my family and Jeff. I couldn’t look weak. I had to be strong for them. I needed to be strong for myself.

photo 5 (2)Every tear I saved over the past two months came rushing out earlier today.
The world is whole again.

I watch mom, dad and aunty Chris laughing. I’m finally able to smile again and actually mean it.

Life is one funny roller-coaster ride.

                                        

17 DEC., 2013

Today’s the big day. I’m moving out.

UAB has been home for 12 days. I have had impeccable care from both my parents and my nurses. I really couldn’t have made it without them. As much as I want to leave, there are so many memories and friends that I have made here. I’m going to miss this place.

Dad comes back from the hotel with my suitcase. I begin packing my things and I’m thinking, “I’m leaving the old Teresa behind and taking the new Teresa with me.”

I’ve changed so much. You can shake your head and be like, “Pshh. Two weeks is nothing. Teresa’s the same girl,” but I would totally disagree. Spending two weeks in the hospital changed my life in ways you could never imagine.

And the waiting game is a bitch. Waiting to hear if you’ll live or not is traumatizing. I’ve had so many emotions bottled up. Will I be able to associate with my friends in the same way I always have? Will I still be bubbly? Will I still be me?

Who can I talk to that can actually understand my situation? Sure, my parents and my aunt were with me, but no one will ever understand what I went through.

Life is no joke. You never know when the big guy up there will call your name. You really have to smile, laugh, fall in love, and enjoy the little things that make life worth living extraordinary. Every single second of every minute of every day.

I hug the nurses, I grab my bags and I’m ready to bounce.

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The nurse escorts me out of the hospital (on a wheelchair, that is). As she reaches the door, I glance behind one last time and smile. This place was way too good to me. UAB, you saved me.

But it is time to leave. (YAY!)

I step into the real world and I’m like a pig in shit. Literally.

We take all the little things for granted. My first breath is long, sweet, and filling. Fresh air is a gift from God. It’s a gift that I am even able to breathe with my own lungs.

Mom thinks its too cold and yells at me to get inside the hotel. I totally ignore her and continue taking deep breaths of fresh air.

I’m caught up in my own world. I close my eyes and lose myself in nirvana.

Check-Up

Jan. 8, 2014

I’ve had a dry cough for as long as I could remember. After surgery, nothing changed. I still cough a lot. Most of the time phlegm comes up (TMI. I know). Otherwise, it’s been good.

I usually take a daily nap or two. I only take one or two Ibuprofen tablets per day (sometimes I forget unless the pain is actually noticeable).

Pushing yourself can be a scary thing when your mind is on a different tangent to your body. My body hasn’t been capable of doing much physically, but my mind hasn’t stopped running. I think this mindset is something I’ve adapted from CrossFit – the more you push yourself, the more results you see. This could definitely be a bad thing, however, luckily, I have only seen positive results. Or at least that’s what I think.

Tomorrow I have a checkup with my surgeon, Dr. Cerfolio, before heading back to school.

Some may say, “School?! What?! A month after having major surgery?!”

Uh, yeah. I’m a busy woman with things to do. Gotta get back on my grind.

My appointment with Cerf will determine whether or not I should or should not actually go back to Syracuse.

I’m praying for the best.

                                       

Jan. 9, 2014

Today’s the day.

I’m pretty excited to see the man that saved my lung (and my life).

He walks into the room and happiness runs through my veins. He’s such an amazing person. His smile warms my heart, and his hugs provide the greatest source of comfort – they’re so full.

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He’s also pretty handsome which can’t ever be a bad thing, right? The picture says it all.

His smile is plastered on his face. Literally. 

He’s at a loss for words… He pulls up my x-rays… Suddenly, I’m at a loss for words too.

Below, you can see the last x-ray I did before leaving the hospital.

lung 2

That white cloud of whatever-you-want-to-call-it on the right side of my chest is where my lung used to be.

Cerfolio spent 4 hours in the operating theater trying to save my lung.  He was only able to save a little bit of it of the lung. Now, there’s only one fifth of it left. Tell me if you can see it, because I definitely do not.

Fluid had accumulated in that space, and the x-ray led many doctors to think that I had developed pneumonia. They advised my surgeon to send me back to the ER to remove what’s left.

Cerfolio said no. The others said yes. Cerfolio said no again, and his way goes. After all, he does know best.

This is what my lungs look like now:

lung 1

Cerfolio knew that time and God would heal all. He knew. 

There’s not a lot left, but it’s there!

IT’S THERE. LOOK AT IT!

It’s a huge difference.

I look around the room. Every single person is smiling.

After such trying times, we deserved some good news. This is definitely good news. 

You need to see the two photos side by side.

photo 2 (5)

Do you see that?!

Some may say I’m lucky. I say I’m blessed.

Time to go back to school and enjoy my life in new and exciting ways.

The Beginning of the End

When you’re the editor of an on-campus publication and you’re a full-time student taking 18 credits, you’d do almost anything for a break – just one second to breathe. Not me, Sir. 

I love the rush. I love the busy life. Most importantly, I love school.

And, illness took that away.

–––––––––––––––––––––––––

My alarm rings. Obviously, I press snooze 15 times before I actually drag myself out of bed. I stuff my face with cereal, my Keurig brews Starbucks’ best, I grab it and I’m on my way to magazine editing.

It’s 9 a.m. on Nov. 12th – just a regular Tuesday morning, or so I thought.

It’s 11 o’clock. Class is over. I go to Health Services and complain about a persistent dry cough that has lasted for two to three weeks.

At midday, the PA sends me for an x-ray.

Within minutes of doing so, the radiologists rush me into another room for a CT scan. What is going on? I thought, hmmm, maybe I just have bronchitis? Pneumonia? But, that be too simple for my complicated life.

It’s 2:30 now. I anxiously sit in the waiting room.

At 3 p.m., I get a shuttle back to Health Services and my world turns upside down.

“Well, Teresa, you have a mass in your lung. It’s almost the size of a tennis ball. It could be benign; it could be malignant.”

What do you mean? I might have cancer? Right now? But, I’m only 20-years-old. PSH! Teresa, be real, cancer doesn’t give two shits about how old you are.

“Call your mom.” No. 

How is that even possible? How do you tell your parents the worst news you’ve ever heard in your entire life? How do you do that without breaking their hearts?

My life is a movie. Cool. 

“Mom…..”

The PA grabs the phone, explains it all, and mom’s off to book flights and organize doctors appointments.

“If your family doctors are in Florida, you need to be there by tonight. You need to have a biopsy done tomorrow.”

“No, actually, my magazine launches next week. I can’t leave. I have things to do.”

“It doesn’t matter. Your health always comes first”

I know it does, but I still respond, “It really doesn’t….”

There and then, I burst into tears. All I have ever known is work. I pull all nighters as if it’s my primary job, I go above and beyond in every project I do just to stand out, and I stress for no reason – but, I wouldn’t have it any other way. I don’t know life without the hustle.

As the PA said, “It doesn’t matter,” right?  I’ll be off to Florida in the morning whether I like it or not.

I cry, I moan, I scream.

And I cry.

Where did that get me? Nowhere, really, but it’s a bit of an emotional relief.

I watch Keeping Up With The Kardashians for 3 hours, and cry a little more (you would think that their pathetic lives might have made me feel better about mine – that was not the case).

My head is all over the place. This, that, there, then, who, what, where, when, why – “why” really stuck though.

Why me? Why now? Why this? Why, God? WHY? 

My aunt gave me a quote that stuck with me:

“Sometimes when you wonder why you can’t hear God’s voice during your trials, remember the teacher is always quiet during the test.”

So, God is with me. At all times. I just have to believe that his presence and love will be enough to pull me through whatever I have ahead of me.