Calling all Dragon Slayers

DragonslayerWhen I was first diagnosed, one of the hardest things we had to face was the lack of research, resources, and treatment options for sarcomas. A couple months later, however, we came across a small event that made us smile. This event is the Dragonslayer 5k Run/Walk/Bike at Cook Park on September 12. This event means so much to me because it’s one of the few efforts fighting hard to bring awareness to the “forgotten cancer”: sarcoma. This will be my 4th time participating in the event, and it’s a huge dream of mine to bring a lot of people together to join me on Team Kick ASPS. The special thing about the Dragonslayer for me is that regardless of the condition I’m in at the time it occurs, I find a way to get myself there and  participate. I’ve completed the Dragonslayer by simply walking, being pushed in a wheelchair, using crutches, having my arm in a sling, and breaking out from the hospital on a special pass from the doctors. A little ironically, I don’t let cancer get in the way of advocating and raising awareness about my cancer.

This event means so much to me because it represents the way I like to live my life: Doing what I like no matter the circumstances, and living to the maximum.  While doctors openly voice their concerns and doubts, or share their mostly pessimistic predictions for my future, I’m just going to keep on doing my thing. The Dragonslayer really embodies this for me. It doesn’t matter how strong or weak I am, I WILL NOT let ASPS get in the way of getting some exercise and celebrating with family and friends in Cook Park. Not to mention helping to raise money for a severely underfunded type of cancer! One of the best things about the Dragonslayer, however, is having an army of friends supporting you and standing by your side. It makes my day to see acquaintances from church, school, sports teams, and more all come together to fight for a cause that literally means the world to me.You can practically feel the love and good vibes during this event as you take in all the smiles, cheers, encouragement, and most of all HOPE.

So I have one simple request: Please join me Saturday morning on September 12 as a part of Team Kick ASPS? Even if you can’t make it your registration fee will help fight sarcoma or you can donate to our team goal which we hope to direct towards ASPS research.

https://nwsarcoma.org/events/dragonslayer/portland/getting-started-2

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And now you know…

As summer rounds the corner of May, the temperature is starting to shoot up the thermometer. I for one, am a big fan of Oregon summers: cerulean blue sky, puffy cumulus clouds, the brilliant green flora, and of course the perfect hot-but-not-too-hot weather. Naturally, the increased heat outdoors calls for some wardrobe adaptations, namely shorts. I personally love wearing shorts because long pants always feel stuffy and uncomfortable to me, but in the past few years  they’ve been a little bit harder for me to wear.

zapperWearing shorts brings up the strange contraption on my leg. I’d like this post to be a simple FYI explanation about the electronic cuff that I wear below my left knee. I’m choosing to write this not because I’m tired of answering questions regarding it, but because I truly believe that people would just like to know. About 2 years ago, I had my first round of radiation treatment. Not long after I was finished, I began to notice my left leg became quite a bit weaker and it would constantly drag when I walked. The nerves in my leg weren’t responding to lift up my foot as I moved. Pretty soon, I could barely walk, and when I could, tripping was a definite hazard. When we discussed the issue with doctors, they assured me that the weakness was a temporary side effect from the radiation.  However, my family waited and waited for months for the symptom to get better, but it never really seemed to. Although this fact was pretty difficult and sucky, it had to be accepted for the moment so we could start tackling my new foot drop. Temporary solutions like an AFO (shoe insert that keeps your foot at a 90 degree angle) were found, but weren’t long lasting problem solvers.

Then one day I came to the Hangers clinic, a business that sells orthotic adaptive devices. While we sat in the waiting room, my mom plucked up a brochure that had caught her eye. The brochure was for a device called a Walk Aide. The Walk Aide is a small battery box on a band that goes under my knee, and it has probes on the inside that stimulate the nerves in my foot to pick up via electricity. We asked one of the employees if we could try it out, and she agreed. Once I started wearing it, I knew it was a perfect fit. The Walk Aide was a miracle that made the difference between having to be confined to a wheelchair and being able to get around on my own. Even though I still wish things could have been different, I could not be more grateful to have this amazing piece of technology available to me. Honestly, I’d rather keep on living life focused on my accomplishments and the things that I can do,than dwelling on the discouragements that can bring me down. On bad days, I  remember that I’m thankful enough to simply WALK, a luxury I know many people don’t have.

So there you have it: next time you see me walking down the hallway with a small box under my knee, now you’ll know that it’s an electronic cuff that picks my foot up so I can walk. It’s really not as curious as it looks. By now, though, I’m used to it all. The lingering stares, the quizzical expressions, even the “Mommy what’s that?”s, won’t stop me from wearing typical summer shorts, skirts, and dresses. I have a voice, and I’m not afraid to use it to let everyone know the important things about myself. It’s taken confidence, bravery, and leaps of faith to walk around with something that obviously makes me different, but it’s added a little bit of fearlessness and  confidence to my personality. These are traits I strongly value. I’ll see you guys this summer…in my sundress 🙂

Tie Dye Love

TieIt’s been 3 years since I made that life changing trip to the ER. This was something that especially stood out to me as I stared at the clown fish mural on the wall of one of the pediatric emergency room bays recently. I remember staring at that same cartoon sea creature painting 3 years ago when I was receiving some painful, devastating news. “Dad…this is THE room”, I pointed out to him as we both blinked our bleary eyes. However, that memory is not the only thing coming up on an anniversary. On a more exciting and cheerful note, the 4Nathalie Tie Dye Event is about to take place this weekend, Saturday May 2nd!

After a pretty crushing blow that turned out to be cancer, there wasn’t a whole lot that could really and truly cheer me up. I didn’t know that such a fun and light hearted event could be possible, but the first 4Nathalie tie-dye held in a garage was exactly that!  An undeniable feeling of hope was in the air that I couldn’t ignore.  But this year, I’m really HOPING that the tie dye can be more than just an incredibly fun event, though. This year it means a little more.

Being diagnosed with cancer is never, ever, an easy process. But the thing that pushed the dial from ‘hard’ to ‘devastating’ for my family was the specific type of cancer diagnosis. I pretty much always end up explaining ASPS as 1% of sarcomas, which occur 1% of the time in all cancers. To say that it’s rare is kind of an understatement. After clarifying that the biopsy matched ASPS, our old oncologist proceeded to list all the different cancer treatments in existence, then explained why each and every one of them didn’t work for my cancer until we were left with none.  It was a tough appointment, but after the initial feeling of helplessness, my mom and dad started researching every possibility under the sun. I couldn’t be more grateful that they did that, because they’re the reason I’m even having a 3 year anniversary.

However, the tough truth is that there really isn’t much for ASPS, whether it’s in terms of funding, research, or treatments. Because ASPS is so rare, there isn’t a clear survival rate percentage. Some people get lucky, and some…don’t. Even though I’m pretty biased, I believe that just because something’s rare doesn’t mean it doesn’t deserve attention. Focusing on all different types of cancers will only just get us one step closer to curing it overall.

Back when I was first given my diagnosis, my family connected online with another girl 2 years older than me in Seattle who also had ASPS. Even though we never got to meet each other in person, we both felt almost like sisters, sharing a bond as we went through the roller coaster that is ASPS together. From what I knew about her, she sounded like a girl I’d aspire to be. She fought courageously for 7 YEARS, always with a beautiful smile, positive outlook, and a heart filled with faith for the Lord. Unfortunately, she went to join him too early in April last year. It wasn’t because she didn’t have enough strength or hope. It was because there weren’t enough effective options available for her at the time. I don’t like the phrase “lost their battle” when talking about fighting cancer because it implies that the situation was in their control, which it obviously isn’t for so many.

Karina is still really hard for me to talk about, because I find myself questioning why certain things happen and why they’re so unfair. However, she has inspired me to work as hard as I can to raise both awareness and funding for ASPS. She’s the definition of a fighter, and in her honor I’d like to try and make stories like hers more and more scarce. I can only hope that sharing her story and mine will in turn inspire anyone reading this to be more passionate about finding solutions for ASPS.

Like my dad has mentioned, we’ve finally found something promising to get behind. Dr, Kevin Jones is leading an ASPS targeted study, but it won’t happen without a little help. We’re planning to send the proceeds from the tie dye event his way. As much as I love interacting with people in person, not everyone can make it to the event. And that’s okay, because if you’re interested in lending a hand to us,  a friend is hard at work setting up a donation page on the 4Nathalie website.

I’m really excited for this weekend. Tie dye can do more than you think.

Scars

These battle scars, don’t look like they’re fading,

Don’t look like they’re ever going away

They ain’t never gonna change

These battle… -Lupe Fiasco, “Battle Scars”

When I first got diagnosed with cancer, I heard that “you never come out of the battle unscarred.” I definitely believe this is true. Not just in terms of physical ones, but emotional ones as well. But most importantly, they don’t have to be your own personal burden to bear.  Back then, I had never considered the possibility that scars don’t necessarily have to be bad things. Scars can be signs of change, strength, or memories. I now look back and remember the first scar that seemed like a huge deal to me.

When I was in 8th grade, I traveled to Bethesda, Maryland to NIH (National Institutes Of Health) for a surgery that would save my life and most certainly change it, for better or for worse. It was a risky thoracic operation that had sent many surgeons here in Portland running away with their tails tucked between their legs at the mere thought of it. I was lucky enough to come across someone during a clinical trial who had both the courage and kindness to attempt something so maverick.

The night before it happened was filled with fear and uncertainty. Though the surgeon had agreed to try his best, I had gone through a few surgeries at that point. I knew there were no guarantees in the operating room. After about 12 hours in the OR, I miraculously emerged out alive. Sure, I was on a ventilator and had 6 chest tubes, but hey! I wasn’t going to be focusing on those small details in contrast to the enormity of the situation. I made the best of it, gradually shedding tubes as I recovered and explored all over the enormous campus. One of my favorite places to go was Au Bon  Pain, a delicious coffee shop and bakery, that my dad liked to joke was an “au bon pain in his wallet!”

However, when the immediate crisis started to pass, I was finally aware of more trivial matters. Case in point: the startling appearance of the sizable incision running down the middle of my chest. Though it’s not like I refused to wear anything but turtlenecks, I was still definitely more self conscious and aware of myself. Cancer isn’t something that you can see from the outside, but once it affects your appearance (such as losing your hair), all patients say the reality of the situation becomes harder and more believable. It was and still is a major deal to me, but not in the way that it used to be.

The truth is, outward scars fade. I’m now confident enough to wear anything I want to. But inner ones don’t always fade. This may seem like a bad thing when it comes to tough or scary experiences, but the scar doesn’t have to be the particular memory that goes along with it. It can be whatever you take from the experience, and most people are more in control of that then they think. Although my surgery at NIH was scary and hard, I learned a lot from the month I spent recovering there.

My family and I were able to meet amazing people in similar situations smiling in the face of hardship. Though everyone there was dealing with something equally sucky, they didn’t let it affect their outlook. We shared groceries on the clinical center’s trips to the unfamiliar East coast supermarkets. We helped and connected with others that were facing some of the exact challenges we were. And just like that, a person who was previously a stranger becomes a friendly face. Someone to pray with or pray for. Someone to commiserate with. Someone who knows. There’s a special bond that you share with someone when you go through the same things. It can be as simple as relating to the annoyances caused by little sisters, 🙂 the difficulty of a challenge problem on a math test, or just how unfair your soccer coach is being when he assigns yet another set of G.I. Joes. Being able to really, truly know what it’s like creates something that the two of you share, and it’s amazing how much closer that can bring you to someone. I believe this is especially true for cancer patients, a point that I discussed in my earlier post about Camp Ukandu. DCHfriends

So now, after learning this important lesson, if someone were to ask me if I regretted my time at NIH…I could honestly say no. The time there gave me an enormous gift. Besides the obvious of saving my life, it taught me the importance of connecting with others. There really isn’t a need to suffer alone. You’d be surprised how much bearable your problems become after being able to share an experience with someone. Because of this, instead of holing up in my room at Doernbecher 10 South, I go out to to the common areas to meet other patients, especially those who are the same age. I try to do this even when I’m having a not so great day, because otherwise I’d be missing out on so many relationships. I’m forever grateful for this scar. The picture above is living proof.

Cram the Stands: Round 2

This Friday, a really meaningful event to me will be taking place in the gym at Sunset High School. Dozens of my peers, their parents, and other acquaintances will be gathering on the bleachers to cheer on the boys basketball team. Then again, next Tuesday to support the girls team. But this isn’t just any old basketball game supporting cancer research to me.

Last yearIMG_1049 I had the pleasure of being the Cram The Stands ambassador for my school. Plain and simple, it was awesome. I loved the posters, the shirt design, and the video with the student section cheering “We love Nathalie” never fails to bring a smile to my face. But after everything had already happened, something still nagged at me. I hadn’t been able to be a part of some major events that went along with being the ambassador. I had been feeling lousy on the days spent at Nike deciding the T-shirt design, and also had to miss the boys game because of a prior commitment to another charity event.  Anyway, I felt that I had missed out on some awesome opportunities, so I was slightly discouraged about not being able to take part in those things.

So you can imagine my surprise and joy when the leadership committee at my school asked me to resume the role of ambassador for Cram The Stands. Since the game raises money for Doernbecher Children’s Hospital (where I often get treatment) and sarcoma research, I am extra passionate about this charity opportunity. Honestly, I wanted to be involved in any way I could. I absolutely loved having a say in what this year’s shirts looked like, and providing inspiration for the actual design. Not to mention the little tingle of excitement I felt going to the Nike headquarters and passing by the mannequins of famous, well known athletes. I can honestly say I’ve enjoyed every aspect of the job, from filming an interview to greeting everyone at an assembly.

This second year of being ambassador means so much to me, because I’ve been able to participate fully. I’ve been feeling strong enough to attend school everyday, on a regular basis this year. I’m kicking ASPS with everything I’ve got, and it’s definitely been awesome. This year I’ve already attended the benefit for Angel Hair (an amazing organization that provides high quality wigs or extensions to children who lose their hair because of an illness). So I’m gearing up to make an appearance at both basketball games, one of my favorite sports to watch. I have certainly got lots of practice with going to Trail Blazer games at the Moda Center with my dad. I can’t wait to see everyone at the games for a cause that is so close to my heart. Let’s kick some ASPS! In the words of Jay-Z, “Don’t call it a comeback. I never left.”

Look Past the Surface

There’s that uncomfortable self consciousness you get when you walk by some people, and they suddenly stop their conversation. Their eyes follow you like you’re under scrutiny and it seems like an eternity until you can escape their gaze. Even though you avoid eye contact, you can practically feel their stares burning into you like lasers as you continue on your way. It’s like being studied under a microscope or trapped behind glass in a zoo exhibit.

Everybody has probably felt this way at least once in their lifetime. Whether you have to use a wheelchair to get around, or have a more daring and eclectic fashion sense, or even if you’re in the center of the latest rumor circulating around your high school. During those moments of painful awkward silence, most people have felt tiny twinges of doubt, or small stabs of insecurity. Because honestly, everyone has those insecurities and challenges whether they’re visible to others around them or not. For some, the moments described are few and far between. But for others, they’ve had to grow used to the constant stares.

In my case, I’ve felt eyes on me as I walk with a slight limping gait and unusual electrical knee brace. One of my heroes and role models, Bethany Hamilton had to deal with people gaping at her missing arm everyday after a horrific shark attack. Yet she overcame the challenges; including rude stares from strangers, and went on to become an awesome professional surfer and all around incredible person. I also know a fellow cancer fighter with a prosthetic leg whose personality instantly charms and brightens the lives of everyone he meets.

So when I walk past yet another group of people in the hallway whose eyes dart to my legs, then get strangely quiet, I try not to drown in the waves of uncomfortable attention. Instead of letting self consciousness drag me down, I use inner strength and inspiration from others to lift me back up. I’ve walked away with great empathy for those who have lived with a disability all their lives. I now view them as examples of some of the strongest people out there, because I’ve been on both sides of the situation.

No matter how thick skinned you are, there are qualities of yourself you probably have less confidence about. Though it seems unfair that some people have to have these things constantly on display for all the world to see, I believe that they can all teach us a lesson about brushing off our inner doubts and walking past the painful glances with strength and confidence. If they can do it their entire lives, I can at least manage to deal with it as well. And next time you pass someone a little different, I ask that you meet their eyes with a friendly smile and continue on with your conversation. Look past the surface and find what connects you.  Because you know that it never feels good to be goggled at like a zoo animal. Because you know what it feels like to be on the other side of the microscope.

It’s Time To Slay Some Dragons

Dragonslayer

I can’t help but feel some excitement as an extremely meaningful event starts to approach.The NW Sarcoma Foundation Dragonslayer 5k Run/Walk/Bike.I’d love to gather up everyone who’s willing to participate and form an awesome Team Kick ASPS!

My family and I discovered this fantastic fundraiser about 2 years ago, the summer following my diagnosis. I can still remember the beautiful, explosive, tie-dye color of the T-shirts every team member sported that first year. Though different people may attend, and different things may be worn, I know that the event this fall will still overflow with the same pulsing energy, love, & fighting spirit that it always brings to Cook Park. It hasn’t exactly been easy for me to attend and participate in the Dragonslayer each year. The first year, I showed up with a pair of crutches and a wheelchair, due to a newly operated on dislocated hip. I felt triumphant and proud as I swung myself across the last stretch, crossing the finish line with all my family and friends cheering me on.The second year, I was barely able to squeeze out a pass from my doctors, but fortunately got to break free from the hospital for the beloved event. My arm was in a sling, I was tired from head to toe, and I still needed the wheelchair at some intervals, but once again I made it across the line with a crowd of loving people pushing me onward.

This walk, run, and bike, has never been a “piece of cake” for me, from getting there to completing it, but I love it wholeheartedly. Maybe it’s the good feelings it brings to all who participate. Maybe it’s being surrounded with kind friends and family, giving me strength for each step I take. And maybe it’s the knowledge that everyone here is slaying the dragons of sarcoma, especially myself when I make it to the fun run despite the fire balls cancer is throwing at me, trying to get me to accept defeat. I feel great when I take on the challenge and fight the monster trying to attack me.

So I’d like to throw out a challenge to all reading this right now: Please participate in this run/walk/bike on Team Kick ASPS! I am so grateful for all of the love I’ve received in the past years from everyone who has taken the time to come out and support me in this event. Everyone of you are heroes, making a possible life saving choice for others. That’s because, not only is the Dragonslayer a fun way to get exercise, one of the best parts of this amazing event is that it raises money for sarcoma research, one of the rarest and least known about cancers! Sarcomas need this precious research the most in order to save lives!

So even if you are not able to attend the Dragonslayer, I’d be beyond appreciative if everyone could please, please donate and support the team’s goal of $2,000 this year. This cause means everything to me. The Northwest Sarcoma Foundation is a wonderful, generous, non-profit organization that dedicates its heart and soul to raising money for important research.

So what do you say? Will you come out and slay some dragons this September 13th? Because I know for sure that I’ll be there, summoning up my strength to kick some major ASPS!

Here is the link to get started with:
http://www.nwsarcoma.org/events/dragonslayer/portland/what-you-need

Dragonslayerteam

Change Starts With A Whisper

IMG_2890

There aren’t a lot of issues that I get really fired up about, and if there’s one thing I hate, it’s being in the spotlight with all eyes on me. I’m a naturally shy and quiet person, so usually lots of attention makes me squirm. But the situation I’m about to describe is one that I can willingly shrug my shyness off for and be passionate about. That’s because this could affect the future, cancer research development, and children’s lives, including my own.

It made me so frustrated, shocked, and angry when I found out that for every dollar given to the National Cancer Institute, only 4 cents goes towards children’s research. I found myself realizing why there were so little treatment options besides the standard chemotherapy or radiation regimen. Put simply, there just isn’t enough money or time spent on new research for pediatric cancers!

I’ll be honest and say that before I was diagnosed, I didn’t know anything at all about this situation. I was blind to the struggle that young patients with rare cancers were having to go through. And since children only make up a small percentage of those diagnosed with the disease, their voice is pretty difficult to be heard.

Very few know the extreme difficulties these patients and their parents are having to face. But now, as a fighter of ASPS for over 2 years now,…I know. And I’m going to do everything I can to pull back the curtain of silence on the world of pediatric cancer. Lack of knowledge has been stifling its voice for way too many years now. So today, I’m writing this post to attempt to shout out awareness and make the reality of being a pediatric cancer patient known. I want to speak not just for myself but for all kids battling cancer, especially the brave, inspiring, and amazing ones who have died fighting against these impossible odds.

Because I’ve been thrown into a complicated world of clinical trials and experimental drugs, I find it hard to comprehend the rules of this system we have created ourselves. When a company denies a patient of a medicine that may be their only chance of survival, it’s near impossible to side with their decision’s reason. Yet this has happened time and time again. When it comes to children’s lives, I believe they should be allowed to have access to the few treatments that are available to them. Of course, I’m very biased, but this appears to me like an ethical decision.

So this is the dilemma my family and I are in now. We have asked multiple times for Compassionate Use of PD1/PDL1, a promising drug for my highly rare cancer, from Merck, Genentech, Bristol Meyers-Sqibb. Why so desperate? Because we’re constantly reminded of the time ticking by. With every morning that I wake up in excruciating pain, every time I feel sick to my stomach, every time we go through a tough scan. We’re there, staring it directly in the face and watching the terrible things cancer can do. And we’re not the only ones, because many other families are going through the exact same stress. But for each time we’ve asked, we’ve also been denied, coming out empty handed. With the help of friends: We’ve made pleas with both homemade and professional videos. We’ve written tons of amazing letters to each of the drug companies. We’ve been on TV for several local stations, explaining our story. We’ve communicated with congress members, drug company employees, anyone you can think of. We’ve blown up social media with Facebook, Instagram, & Twitter. There are so many amazing people supporting us, working as hard as they can to try and make a difference.

Yet with all of these efforts, the companies we’ve cried out to have met us with little to no response, all because of “set in stone” rules. We have to realize that the people in the companies aren’t the enemy. We’re fighting against a faulty system of clinical trials that needs to be rethought and adjusted.

It’s frustrating. Discouraging. Unfair. There’s been a lot of stress, tears, and pain. We’re tired but we’re not giving up. I have hope for pediatric cancer research, and I have hope for myself. I’m stubborn, determined, and have grown stronger through all of this. I don’t throw in the towel easily. Right now, though it seems like we’re one tiny fish in a gigantic ocean, one small voice in a crowd of millions, I will continue to fight with the hope of making a difference. After all, change begins with a whisper.

Camp Ukandu

photo-2Honestly, I don’t know many people who would get excited to go off to a “cancer camp”.  When I was first  diagnosed, it would certainly not have been something i’d have chosen to do; as I was reluctant to have anything more to do with cancer than I already did.But hopefully next summer, that excited camper will be me. That’s because for me, and quite a few other cancer patients/survivors, Camp Ukandu is  much more than that.

It’s a place where you can go and not have to worry about taking all your medicines at the right time, or feeling self conscious of your hair loss. Its a place where you can try new, adventurous things like rock climbing, obstacle courses, swimming, archery, & much more without your parents or doctors worrying over you. But more than anything, it’s a place where you can have fun, make new friends, and just be yourself without the heavy cloud of a terrible disease constantly hanging over your head.

Camp Ukandu, a camp specifically designed for cancer patients and their siblings, was a topic that came up this year, strongly recommended by caring hospital employees and enthusiastic friends. Even though I was open to giving it a try, there were other obstacles that sprang up in the way. For one, my daily life at home was no piece of cake. Everyday I wake up with some form of morning sickness, varying from severe to mild. There are also pills I must take at exact certain times and TPN that I get throughout the night. At the camp, there are medically trained nurses & doctors who have lots of experience with these things, but there was still a worry that away from home, things could get mixed up or have problems. There was definitely a lot of doubt as I went off to camp, but we trusted in our philosophy of trying to do normal things despite the circumstances. Our reasoning was; I could either feel bad all alone at home, or I could feel bad in a positive, fun environment. I’ve gotten the chance to do some amazing things through fighting cancer, all because I put aside my worries and trusted God.

I am so glad that I took the chance to go to Ukandu. There were tons of fun things to do, one of my favorites being art. Some of my best memories include weaving a friendship bracelet with other girls in my cabin, participating in the all camp photo challenge, playing the group games, making my own homemade bow and arrow, getting my hair and makeup done professionally, dancing with everyone at the dance, having a fancy candlelight dinner, riding in the golf cart, and of course, meeting a bunch of new friends. I felt comfortable there, more like myself, and (no offense to my parents,) not in the least homesick! I can guarantee there was no one there with a victim mentality or feeling sorry for themselves.

It was really bittersweet saying final farewells and hugging everyone goodbye at the end of camp. I found I couldn’t shut up about all the fun I had had while driving back home with my family and an elated (bordering on crazed) black and white puppy. 🙂 The thing that puzzled me the most was how something so centered on cancer could also have nothing to do with cancer. There was just an unspoken connection between everyone at camp. You didn’t have to say a word about diagnosis, doctors, or medicine. We understood.  I will never forget that week, and hope to return next summer. 

As a last note, I’d like to mention that Camp Ukandu used to be funded and sponsored by  the American Cancer Society until last year. The ACS chose instead to focus more of their efforts for more research instead of the camp. I’m totally for new research, but was a little sad by their decision. Camp impacted me in a huge way, and I’d love to give back by finding a way to help raise some money for it. I certainly know that this is a cause that has brought joy to me and so many other kids.

Father’s Day

Kayaking Father's Day 2014

Kayaking Father’s Day 2014

There is such a variety in all  the types of fathers in the world, it’s pretty much like rolling a dice to see what you will get. Some fathers don’t even bother to spend time with their kids, let alone support and help them work towards their dreams. Good fathers can be harder to find than you might think. Personally, I feel pretty blessed to have the one that I do. Some good fathers will be there for you throughout childhood, offer you some wise advice, and support your goals and dreams. And yes, I’m lucky enough to have a dad who expertly accomplishes all of those things, but I also have a dad who has gone above and beyond for me in the toughest of times.

When I was first diagnosed with rare ASPS, he could have crumpled down and given up. He could have taken all of the tough blows our family has been hit by with a victim mentality. He could have focused on himself and how his life would now be affected.

But he didn’t. Both my dad and my mom rose to the challenge of fighting this stubborn, mysterious, tricky, & TERRIBLE cancer.  My dad researched cancer fighting foods and stocked the fridge and pantry with healthy food. He helped me create adapted exercise plans that would help strengthen parts of my body that were weak. I can always count on getting the best encouragement when I’m feeling kind of down or depressed from bad news.  He helps me on days when I feel bad, where my body & mind don’t want to do anything, and gives me that little (sometimes big, I admit!) shove I need to get out the door and face the day. My dad is the biggest motivator, cheerleader, helper, and teacher in my life.

Although my eyes were really opened to just how much my dad cares about me after my initial diagnosis, honestly, he’s always been there for me many times before that as well.

One memory that really sticks out to me was when I was first learning to ski, about 9 years old. I was terrified about almost everything to do with skiing; the lift, the uncomfortable space boots, and hurtling down a steep icy slope. And the experience was in no way an easy accomplishment. I fell on my rear countless number of times, tears staining my face as I gritted my teeth through the entire ordeal. Trust me, I was NOT a fast learning student!  I can’t tell you how many times I wanted to give up, sit down, take of my skis, and clomp down the hill on my own two feet. But for every wipeout, for every discouragement, for every fear, my dad was there to comfort, encourage, or show me the love I needed to give it another shot. I will never forget how my dad refused to give up on me that day. The incredible patience and perseverance he showed permanently stayed with me. It taught me one of many lessons I’ve learned through his example. Finally, when I managed to struggle to the bottom of the hill, I let out a big exhale. It felt wonderful.

I now watch him fight just as hard through every rejection we get from drug companies, as we desperately plead for an age exception to a possible life saving medicine (PD1 or PDL1) before its too late for me.

Since then, I’ve taken into account several lessons. I’ve learned not to just give up because something’s really, really, tough. I’ve learned to do the best you can with imperfect circumstances that you don’t necessarily understand. I’ve learned that sometimes the first step is the hardest, but once you get past it, you can do anything! I’ve learned that a positive mentality can turn around a situation faster than almost anything. I’ve learned that a little extra kindness just might make you a new friend. And all of these things I learned from, you guessed it, my dad! Through these indirect lessons, I’m inspired to become the best person I can be. I can’t think of  a better gift that my dad could give me. I’m so appreciative of all of the time and energy he’s poured into me, my interests, goals, and dreams. And most of all, I enjoy the time we spend together and the sense of humor we share.

So this Father’s Day,even though I could never repay him considering what he’s given me, all I want is for my dad to know how grateful and lucky I feel to have him as a father. I love you 🙂