Aware

May is Brain Tumor Awareness Month…are you aware? Before February 2, 2005, I wasn’t.  I didn’t know there was a month designated to brain tumors, I barely knew what brain tumors were. I thought they were rare, I thought they only happened to “other people”, and would never happen to a child. But actually they aren’t rare. Recently I read that within the last year brain tumors have surpassed leukemia as the deadliest cancer (awesome statistic, I know). Thankfully there has been leaps and bounds in the research and treatment of leukemia, and it’s even considered “the good cancer to get”, if that can even be a thing. But I guess if a child is going to get cancer you want one that is the most treatable, and right now that is leukemia. That is not to say that it’s not a long battle to fight and it’s also not 100% curable. There are many children who are still losing their battle to it and there is still more work that needs to be done! But brain tumors, they are nasty things. They invade the most precious part of the body and show no mercy. Brain tumors, I hate you.

What did I think cancer was before Mary was diagnosed??

1. Something that old people got.

2. Something that would rarely happen to a child.

3. It could only happen to “other people”, never my family. I remember a few months before we found out that Mary had a brain tumor I was watching TV with Mark. A commercial for St. Jude’s came on. Mark, who was in kindergarten at the time, asked me if that could ever happen to him. My response? “NO WAY MARK! That would never happen to any of us. That only happens to a few kids and it would be impossible for you to get it. That hospital is far away, don’t worry about it buddy”.

Oh how naive I was about the realities.

Even more I had no idea what the types of treatments were and what they meant.

1. I knew the word chemotherapy and I knew that people received it if they had cancer. But what it is and what I thought in my middle school head were totally different. When I pictured chemotherapy I thought this- Someone who had cancer was put into a room by themselves. Chemicals were then released into that room to be breathed in by the person…where I got this idea from, I will never really know…

2. I had no idea what radiation was.

3. Steroids were only things taken by professional athletes to make the stronger…oh how I learned the negatives (and positives) of steroids very quickly! From mood swings, night terrors, and always being hungry but never knowing what she was hungry for. We would raid the fridge and pantry pulling out every possible option for her. Of course we wouldn’t find that “perfect” option until about the 23’rd item we found in the way, way, back of the cabinet.

4. Sometimes when my hair would shed a little more than normal (TMI, I know), I would fear I might be getting cancer. I have no idea that it was a side-effect from chemo, I thought it was symptom.

And finally I never knew cancer could have it’s positives. Don’t get me wrong, I don’t want to downplay awful disease, and like I said before I would give everything in life back to have Mary back, but this happened to us, it’s our reality, and we have to have find the good things.

1. It gave us a community like no other.

2. It introduced us to some of our nearest and dearest friends- whether it was families we met at the hospital, families we met because Camp Sunshine- without cancer we would have never met them.

3. And what this blog is all about- it lead me on a educational and career path that I may have never gone down.

Be aware, it’s the only way we will ever see an end to this awful disease.

 

“What Cancer Cannot Do”

Cancer is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

 Author: Unknown 

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Community

Sometimes it takes the toughest of times and the worst circumstances to really see the people who are standing behind you. That was extremely true when Mary became sick and after her passing.

For one our entire town rallied behind us. We had friends bringing us dinner, offering rides and babysitting, sending gifts and cards, and an entire community rooting Mary on in her battle. We couldn’t go anywhere with her without someone stopping to tell us that they had heard about Mary and how amazing her is. Some of our friends even helped make Mary’s last wish of going to the Polar Express come true. We knew that we could count on our friends to help in anyway we needed. And still they showed up for the golf tournaments we use to hold, the Christmas Party Fundraiser we have each year, it’s amazing.

Our extended family could have not been more supportive during everything. Each day someone was visiting Mary and loving her so much. They tried to make our lives as normal as possible and always tried to make sure we were having fun! Our family extends much deeper than the typical family, and for that we are thankful. Mary had SO much love around her because of them and that is exactly what she needed.

My friends have learned to embrace my crazy life. Whether they knew Mary or didn’t get a chance to know her, they could not be more supportive. They understand that my life is anything but normal sometimes, but yet find a way to help me make it all work. They love remembering and honoring her. Whether it is showing up to events, shaving their hair off in her honor, or doing an act of kindness in her memory, they never cease to amaze me. Whether they are new or old friends they want to learn about Mary and my family. They love hearing stories about Mary and always ask questions about her. I love that they aren’t afraid to do this and aren’t awkward about it. They allow her to stay part of who I am.

We have an amazing support network of “cancer friends.” These people became our life line. They are the ones who understood. They were the ones that we could talk with about issues regarding cancer and everything that comes along with the crazy roller coaster of the awful diagnosis. We are still friends with many of these families today. Some of their children have passed. We have stood by them, cried with and for them, and always try to do our part in supporting and remember their child. Some of these families have children who are striving, healthy, and cancer free! We celebrate with them all the victories and accomplishments that their child has. And we have friends whose children are still fighting the fight. We support and love them through the hard times and setbacks of treatment and celebrate the good times! It is certainly a unique “club” to belong too.

Today was a true showing of community and how awesome it can be. Today was the run for Charlotte Kelly. Charlotte was 5 years old when she passed away after battling Neuroblastoma. We have become close with the Kelly family and are extremely thankful to call them our friends. Along the route were posters of many of our friend’s children giving us many reasons to run and help support the cause. My amazing friends, Kelly, Alicia, and Shauna, showed up to run the race with us! Right when they heard about the race and what it was all about they were in!  It was amazing to see thousands ( I mean thousands!) of people show up to help fight Neuroblastoma and try to find a cure of the deadliest of pediatric cancers. Community is a wonderful thing and it made for a great day!

I am beyond thankful to have an amazing community on my side.

“I love my friends”- Mary Katherine Conroy

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Be someone’s rock

Support. Some people need a lot, and other need it when times get tough. But no matter what, everyone needs a little support every once in awhile.

I will never forget a moment a few weeks after I was told Mary was going to stop taking chemo. Her and I were in my room hanging out. We would do this often. . I knew that each time I got to do this with her was special. One day and we were sitting on my bed I started crying. She asked me why I was so sad. I told her that I was worried about her and felt bad that she wasn’t feeling good. What was her response?? “Don’t be sad Kelsey. I am okay, everything is okay. You don’t need to cry.”  She was my rock. She was my person. She got me through the toughest days, and continues to do so with the memories she left me.

Towards the end of her life she spent a lot of time inpatient at Mass General Hospital. One day our cousin Joseph came into to see her. They were the same age and best friends. Joseph entered the room a little nervous to see Mary hooked up so many IV’s and oxygen. But he was brave and sat down on her bed with her. They were looking through a boo when Joey started to cry. Mary lifted her arm up and began to rub his back. She said to me “It’s okay Joseph, Mary’s here. Everything is going to be okay.” So as she is sitting hooked up to everything she was more considered with making Joseph feel better. But then again, that was who she was. She would our boulder of a rock.

She would often repeat her favorite phrase, “It’s okay Molly, Mary’s here”, “It’s okay Daddy, Mary’s here”, everyone she cared about she would make sure they knew that she would also be by their side.

Be extra nice to someone who needs a little boost. Try to do something for them. Give them a call or send them a text to let them know that you are supporting them and will always be on their side. It’s the simple things that can really help someone in a time of need.

I try to be  rock for others. I try to lend a sympathetic ear. I try do nice things for friends who need a little encouragement. I try hard, but so many days all I want to hear is “It’s okay Kelsey, Mary’s here.”

 

mary and joe deck mary and joey

Inspired

The day after the 2014 Boston Marathon it is hard to not feel inspired. After watching thousands of people take the streets and run, most of them running for charities, was absolutely amazing! A huge shout out to all those who ran yesterday, congratulations!  Especially my friends Max and Kyle who ran for Hole in the Wall, nice work guys!

The marathon has a pretty cool meaning to our family. Through Mass General Mary was matched with a runner, her name is Deb. Deb has continued to run for Mary, its  pretty special thing! Each year we attend a pasta dinner with Deb and her family and then cheer her on the next day. Even though Mary is gone, she is still giving back to a place that meant so much for her. Each year Deb raises money for the Mass General Hospital Pediatric Cancer Program.  Ellison 17 at Mass General and the clinic was her home away from home. She loved everyone who cared for her and they gave her and our family the best care! One of her nurses, Caitlin, ran for Mary last year. Not only did Caitlin take wonderful care of Mary, but Caitlin loved Mary and Mary loved Caitlin. So much so that she ran a marathon for her, that’s a lot of love! She ran again this year with Mary on her mind, finishing what she started last year!

Mary has inspired many through the years. People have rode the Pan Mass Challenge, run and walk races,  played in golf tournaments, jump into freezing oceans for polar plunges, donated money, donated toys, volunteered their time, and she even inspired an entire day of kindness on January 22’nd of this year that spread across the country. It means the world to our family to hear stories from others that they did something because of Mary.

What made Mary inspire so many?

She didn’t win any awards, she didn’t give an awe inspiring speech. She was simply herself. She was the strongest child in the world. She went through so much in her little life and never once complained. She took everything that was thrown at her with a smile on her face. She never once said “why me?”.  She was kind and giving. She was the first kid in a room to share her toy, because she really did want everyone around her to be happy. She fought a good fight, and her story deserves to be honored.

How does Mary inspire me?

More than I can describe. Each and every day I try to live my life like she would. I try to be extra kind to people, I try to take everything that is thrown at me in stride. I try to stay positive. It’s hard, but I try!

She inspired me while I played sports. I would be at a conditioning practice and in pain during the tough workouts. I would think of the pain Mary experienced, and suddenly my pain wasn’t so bad. If she could go through what she did and not complain, how dare I do so?

She inspired me to do what I want to do with the rest of my life, the biggest piece of inspiration I could have asked for!

 

“I don’t care if you win the game, just try hard”- Mary Katherine Conroy

 

Don’t Blink

We are currently up in North Conway, NH for a little Easter Weekend getaway. Molly and I had a bit of a rough day early on. Somehow everything that went wrong was my fault- her falling and hurting her ankle, getting hit by branch, all somehow was because of me. As previously stated I love my siblings more than thing and Molly and Michael are the most important children my world. But today I was frustrated with her and she was frustrated with me. But after a nice swim in the pool Molly and I walked down to order a pizza for dinner. We were thankfully best friends again. As we sat there and chatted over a few beverages I couldn’t help but to just stare at her. My phone was dead and we had the unusual situation of being one-on-one, and we just sat there a chatted. I took in every word she spoke, looked into her big blue eyes, and we just loved being in the moment with each other.

A month after Molly was born Mary was diagnosed. When Mary relapsed Molly was a little older. When Mary had appointments or was in the hospital our grandparents, aunts and uncles, and family friends would always help take care of us. But the only person Molly wanted to be with was me. My summer going into Freshman year of high school Molly and I spent almost every day together. Mary was very sick and was in and out of Mass General a lot. Molly and I began extremely close and have stayed this way (I am forever thankful that we used this hard time to create an amazing bond).

Molly’s life has been anything but normal. The first few years of her life were spent in and out of the hospital. By age 2 we were explaining to Molly that Mary wasn’t coming home and that she was in heaven. Molly takes her unique life in stride. She honors Mary each and every day. She talks about her and keeps her memory alive. She is kind to others. She loves volunteering at the the special needs program at the Boy and Girl’s Club.  This little girl jumps off of “Jaws Bridge” in Martha’s Vineyard without hesitation, she knows that there are bigger fears in life. She knows she is missing a big part of her life. She knows she lost one of her best friends. She knows that she should be walking to and from school with Mary. They should be inseparable. But she doesn’t dwell on it, she lives each and every day to the fullest and has more fun in her life than most 9 year olds.

But as I sat tonight and just look at her I realized she is 9 years old. She growing up before my very eyes. She isn’t a little baby anymore. We sat there talking about Mary and our trips to North Conway with her. We talked about the girl drama going on in the 3’rd grade. We talked about how cute Mikey was playing in the pool. She shared our favorite parts of the day. We talked about her new crush….

I blinked and my little sister has turned into one of my best friends. Without Mary and the circumstances we were put under I don’t know if we would be so close. We are not thankful for what happened, but we are thankful that we were able to take something awful and turn it into an amazing relationship.

“I love MY baby Molly”- Mary Katherine Conroy

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Molly at Flatbread

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molly jumping

A positive attitude and humor will make you live longer

It is often said that laughter is the best medicine in the world…Mary proved this theory to be true. Mary loved to joke around and be silly. She loved to laugh- and not just regular giggle- a type of laugh that got her whole body shaking! It was one of the best things to watch.

She had a pretty weird sense of humor. One of her favorite movies was Matilda. She thought the way Ms. Trunchbull acted was hilarious and laughed as she threw kids in the “chokey”.  She also loved to joke around with Mark. It wasn’t unusual for her to request for Mark to be thrown off the porch…yes you read that correctly (don’t worry, they were the best of friends and her love for him ran deeper than any other love in the world). When that request came someone would have to pick Mark up, bring him outside onto the porch and pretend to throw him off…yes that is what got her into a good mood! Mark being the great sport he was would scream in fear as Mary sat on the couch laughing as hard as she could. Mark would be asked to do this especially while she was on steroids and didn’t know what she needed to make her feel better. Weirdly enough seeing her brother getting thrown off a porch was the perfect solution!

She also loved pulling pranks on people to get a good laugh. One of her favorites was on our Uncle Paul. Uncle Paul and Mary both loved M&M’s. Mary often had a full supply of them. One day Uncle Paul came to our house to visit. He came in and went right over to Mary to say hello and give her a hug and kiss. She had been plotting her head that she was going to hide all the M&M’s from Uncle Paul! So when Uncle Paul asked her if he could have some candy she replied, “I don’t have any.” Since she couldn’t walk at this point she hide all of them under the cushions of the couch. The fact that Uncle Paul believed her and he fell for her “prank” made Mary laugh and laugh and laugh. Being the nice girl she was she eventually took them out, offered some to Uncle Paul, but quickly put them back behind her back…fooling him once more! From them on in she would always hide her M&M’s from him, even when she went to his house for a visit! She would even go as far as telling him he was crazy and would yell “Go to bed Uncle Paul!”

Even in her sickest days she always had a smile on her face and a laugh to offer. Our family followed in her footsteps. When Mary was in the room it was very hard to be in a bad mood. Her oncologist, Dr. Ebb, told my mom after she died  that he was often amazed when he would look at her scans or lab results in comparison to attitude and quality of life. His only explanation- our positive attitudes and the ability to laugh and have fun throughout her entire illness is what made her life a longer and better life.

So laugh, have fun, be silly…it might just be the closest thing to the fountain of youth!

“Silly Uncle Paul!”- Mary Katherine Conroy

mark and mary                                               mary and uncle paul

 

Sing and dance like no one is in the room…even if they are staring right at you!

For the last few months of Mary’s life she was unable to walk due to her tumor’s growth and the treatment she was on. But do you think that stopped her from enjoying something she loved?! Of course not! Mary would hold on to the side of the couch or on to someone’s hands and dance away! She would be laughing hysterically the entire time! She knew she looked silly shaking her little butt, but she didn’t care! And even more she would make everyone dance as well! One request she often had was “Papa, SHAKE YOUR BOOTY!!”. And on command our grandfather would doing his silly dance. She would sit, watch him, and laugh endlessly. She loved it, it could make any pain go away!

One of my favorite “Mary Memories” took place at our good friend’s, The Corbo’s, house. The kids had been playing around with the karaoke machine while the parents all sat and talked. It was a crowded house that day with lots of kids and adults. Suddenly the house fell quiet. We looked up and there was 3 year old Mary with the microphone in her hand. She sang her favorite song from the movie The Polar Express “I’m Wishing on a Star”.  Everyone watched and listened as she sang her heart out. It was so awesome to see her just sing and have fun! Of course the entire house went wild in applause at the end of the song! What a fun night!

She also loved to sing in the hospital! Some of her favorite songs were- Bad Day, Twinkle, Twinkle, and all the songs from the Polar Express (or any Christmas song for that matter). One of the best pictures of her is when she was using a popsicle as a microphone! She is belting the words of a song and looks like a true rock star!

She taught me that you don’t have to be good at something to love it! I am horrible at both singing and dancing! My roommates will often remind me that I am very tone-deaf and my family likes to remind me that I have absolutely no rhythm. But even so whatever song I have stuck in my head, I will sing it out loud. When it has been a long day, my roommates and I are having a dance party or even better a dance off (yup, this happened last week!). So what if we are some of the world worst dancers? We have a heck of a time! 

What other life lessons could possibly come from singing and dancing like a fool?

1. If you don’t like something, change it so you do! One song that our entire family sings differently is the Christmas Song “I’ll Be Home for the Holiday’s”. While Mary was listening to it one day she didn’t really like the way it went. Instead she changed the words to “I’ll be Home….IN A MINUTE!” (You had to IN A MINUTE, of course!). Try it sometime, it’s a great version of the song! 

2. If it’s fun, do it! Like I said, I am horrible at both singing and dancing! But who cares? It’s FUN! Last week a little girl I was working with in the hospital and I realized we both LOVED the movie Frozen and the music that goes along with it! So what did we do? We sang and danced for hours to all the music! Doctors, nurses, and other staff saw us, and what did they do? Joined in of course! We all looked pretty foolish, but who cares?!

Mary's singing at the Corbo'sImageImage