Danica’s Story

I promised to occasionally share the stories of kids who are dealing with illnesses, or people who dealt with illnesses when they were kids. I’m happy today to share with you the story of my friend, Danica. She’s a Penn State alumnus, and was heavily involved in THON during her time there. So here it is, in her own words:

I had a pretty normal childhood up until August 2000, I was 14 and just a few weeks into my freshman year of high school, when I started to get a pain that went from my hip down the back of my right leg. At first it was just an uncomfortable pain and it progressively got worse and worse. After 3 months of going from a chiropractor to my PCP, to an orthopedic surgeon and getting a CT scan, nuclear bone scan and a MRI, a football size mass was found and I was referred to an Oncologist at the Children’s Hospital of Pittsburgh. I was admitted and had a biopsy done of the mass which came back inconclusive. One week later and a week before Christmas they did an out-patient bone biopsy and I was diagnosed with Ewings Sarcoma, a rare bone cancer, which at that time had a 30% survival rate. It had broke out of the bone and created a football size tumor that was pushing on my sciatic nerve which was causing the pain down the back of my leg. The very next day, I was admitted and it was explained that I was going to have surgery to get a central line put into my heart, that I was going to get very sick from the chemo and that I would loose my hair. As a 14 year old girl I was clearly hysterical. I remember my Oncologist saying, “If I gave you 100 people and 50 of them were sad and depressed and just laid around and the other 50 were positive and happy and made cancer a part of their life, not their life, which 50 do you think have a better chance of beating this?” Those words have stuck with me until this day. The night of my surgery was also the night of my first of many chemo treatments. After my first few doses of chemo and a follow up scan the football size tumor had almost disappeared. However since it was a bone cancer I continued with 13 weeks of chemo and 7 weeks of radiation treatments. Chemo was clearly unlike any experience I could describe, just sitting there while basically poison got pumped into me making me sick as hell every time. I received alternating 3 and 5 day chemo treatments every 3 weeks for a year. The doctors told me all the possible side effects that could happen and thankfully I had very few of them over the year long period. I was very positive the whole time and did what I had to do to get through what I needed to do. I finished all 13 weeks of chemo and the following year after a few months of clear scans I was able to get my central line removed. I went year after year with clear scans until 2010 when I started getting a pain in my abdomen in which I thought was appendicitis. After going to the ER and getting a CT scan, a 5cm mass was found. I got surgery to remove the mass. When the results of the biopsy came back they called it Leiomyosarcoma which they couldn’t clearly state but felt it could have been caused by the radiation I had previously received. My new Oncologist, who was at the Hilman Cancer Center, gave me a few different options to choose from. After a lot of research, talking to the surgeon, my prior oncologist and making a long list of pros and cons, I decided to not get chemotherapy and to just follow up with scans every 3 months, which was not an easy decision by any means. I went a year with good results so on my 1 year follow up scan I expected clear results as well, but 2 small masses showed on the scan. They were on the outside area of where the mass the previous year had been so my doctor felt that maybe they just didn’t get wide enough margins the first time. Again I elected to get surgery with no treatment and continue to get scans. My last follow up scan was in December 2013 and they were clear! My doctor also let me go from getting scans every 3 months to once a year. April 2014 will be 3 years of clear scans and unless something comes up in the meantime, I don’t have a follow up until January 2015!

She’s a very passionate and spirited individual, and her dedication to helping sick kids is truly inspirational. I’m glad to count her among my friends.

Lot Of Ins, Outs, and What-Have-Yous

Hi there.

First, you get cool points if you get the title reference.

Second, I apologize for once again leaving a huge gap inbetween posts. Life being life, frequently updating this hasn’t been my highest priority. My bad, yo.

Now on to the meat and potatoes, as it were!

My eyebrows are coming back in slowly, surely, and unevenly, with scary and hilarious results. I had fun at work one day and drew some cartoonish ones in with a dry-erase marker. People weren’t too sure what to make of it.

An extraordinarily generous Anonymous Donor hit the default donation button on my Extra-Life page the other day, and donated $1337! Whoever you are, if you are reading this, THANK YOU!!! In all my years of fundraising and doing this sort of under-the-radar charity work, this is the single largest donation from an individual I have ever seen! This kind of generosity is amazing and inspiring, and it just fills me up with happy. Whoever you are, you really are making a difference.

Which means I’m going to suffer for it (in a good way). Because of that amazing donation, my goals for the month of March have all been met, which means I will be attempting the Seib’s Irish Challenge (oh, gods, how I hate slaw); going to church every Sunday in April (oh, gods, how I hate church); and going on a 25 mile bike ride in a tuxedo (oh, gods, I am out of shape). There is a fair chance each of these events may kill me (ruptured stomach/burnt to ash/heart attack) so they should all be entertaining and amusing for you guys.

On to some other business.

Today I will be getting my head shaved for another charity, St . Baldrick’s. They support childhood cancer research, which, as you know, is very near and dear to me. So drop a buck or two if you can, please. My goal is $50, which gets me a t-shirt. Either way, I come out bald, and it’s for a good cause. http://www.stbaldricks.org/participants/mypage/712536/2014

Last weekend, one of my battle buddies (guys I served with in Afghanistan, for all you non-military speaking folk) was in a bad accident. His family set up a fund to pay for their travel and lodging expenses, as he will likely be in the hospital for a while. Though the fund has already surpassed it’s goal, it wouldn’t hurt to kick it up to 11. He’s a great guy, still in the army, consummate badass, training up new Rangers. Give it a look. http://www.gofundme.com/7i7nog

Finally, next weekend is the National Walk For Epilepsy, something I’ve participated in for the past couple of years for my oldest friend, Kaitlyn, who has epilepsy. So check that out, and if the team reaches it’s goal, I’ll let Kait pick out something bonkers for me to do. This was my cause-of-the-month for April last year, and we exceeded our goal, and I ended up having to get a tattoo of Barney the Purple Dinosaur on my ass. It’s very well done. He’s playing a trombone.
http://giving.epilepsyfoundation.org/site/TR/Walk/walk?team_id=29990&pg=team&fr_id=1970#.UyRK0-29LCQ

Go forth and make the world a better place!

Completed Challenges, What’s Up For March?

Sorry for the gap between posts, folks. There have been a lot of unexpected moving parts going on in my real life.

This past week, I finally got to get together with people to complete my remaining challenge from January: eat sushi. As I’ve mentioned, I had never eaten sushi before. The mere thought was disgusting. I don’t even like cooked fish (unless it’s from Long John Silver’s). So this… Well, it wasn’t as bad as I was expecting. My expectation was that I was going to end up vomiting profusely. That didn’t happen. Here, watch for yourselves:

And because we raised over $500 in February ($550, to be exact), I had to shave my eyebrows. Also, it was time for my glorious muttonchops to say goodbye, as their month was over.

Now, for March’s Madness:

$100 and I’ll attempt the Sieb’s Irish Challenge (which can be viewed here: http://nebula.wsimg.com/90efc966855bf90b35358bc03129c1d4?AccessKeyId=CA902323F749F33EE53F&disposition=0&alloworigin=1)

$500 and I’ll attend a different denomination church each Sunday in April. Seeing as how I’m not at all religious, and fairly anti-church in general, this is a big deal. But I promise I will behave and play nice. Scout’s Honor.

$1000 and I will do a 25 mile bike ride in a tuxedo. Real, legitimate tuxedo. With a bow tie.

And I apologize for the lack of integrated hyperlinks. I do all this from my phone, and the most recent WordPress App update removed that particular tool from where it was.

Remember guys, it’s all for the kids!

Number One!

A month and a half into 2014, and my team for Extra-Life, Yabba Dabba Doom!, is ranked first globally! This is pretty awesome and exciting! There is still eight months and change to go, and the vast majority of players and teams haven’t even registered yet, but still! If we can keep this pace, we can conservatively hit $12,000 by gameday, which should be top 25 material. To my knowledge, top teams and fundraisers don’t get anything but bragging rights and the satisfaction of knowing they raised a LOT of money for sick kids. And to me, that is infinitely cooler than any trophy, medal, certificate, or physical prize. I’ve already surpassed the amount needed for maximum schwag from Extra-Life, and I don’t plan on keeping it because I got the same things last near and I don’t need to start a collection. Some lucky, generous donors will be receiving a t-shirt or a medal around this time next year.

It’s great to be number one. But it’s all because of you guys, and it’s all about the kids. Thank you all so much, and please, keep it coming!

The Plunge

This past Sunday at around 12:13pm, I ambled into the frigid depths of the Ohio River, thus fulfilling my $1000 promise from the month of January.

The snow on the shore burned my feet as I walked to the water. The ice scraped my skin as I punctured through the surface. The water was so cold, it hurt. And it was too shallow and rocky to just jump in and get it all over with. Oh no! I had to do it slowly and painfully, because nature is cruel. In the end, I spent about about a minute or so in the water, sitting down, then getting into the push-up position. I got everything except my head wet. And it was miserable.

And then I got out of the water, and it was even worse. Air temperature of about 24F, light wind, snow…

It was a great day to keep a promise. For the kids.

February’s Challenges

I apologize for the tardiness in getting my new challenges posted. I was in the boonies of receptionless West Virginia over the weekend, where I managed to gracelessly fall down some stairs and injure myself. Nothing major, but I am a bit sore.

So for February!
$100 and I will attempt the Cinnamon Challenge (which, I hear, can be hazardous to your health)!

$500 and I will shave my eyebrows on March 1st (because what looks more awesome than a bald brow?)!

$1000 I will dress up in a popularly-selected costume (relatively kid friendly and affordable) and go shopping at a mall and totally act like I’m wearing normal clothes.

All challenges will be photographed or videoed when appropriate and posted on here and my Facebook page.

So help me make this weirdness happen! Go to http://www.extra-life.org/index.cfm?fuseaction=donorDrive.participant&participantID=89053 to make a donation!

Promise Kept

I’m going away for the weekend and running water will be scarce, so I got a one-day head start on the muttonchops. One promise down. Still coordinating a sushi gathering and polar plunge. Stay tuned!

I’m Going Swimming

So I just realized that I’ve completely failed so far to explain on here what I’m doing this month.

$100 and I have to eat sushi. I’ve never eaten sushi, but I generally don’t like fish, and just the thought of eating it raw makes my tummybox do jumping jacks.

$500 and I have to rock old-school muttonchops for the month of February. I’ve been growing my beard out to get a head start so that it will look appropriately ridiculous when I shave the goatee area.

$1000 and I have to do a Polar Plunge into the Ohio River here in Pittsburgh. In case you hadn’t noticed, this is the coldest winter we’ve had in about three decades, and I REALLY hate being cold. Bad experiences in the Army.

So within the past half-hour, I’ve surpassed my $1000 goal for the month, thanks in very large part to one of my generous Battle Buddies from the Army. Now I’ve got to start planning and getting the pieces into place so that I can survive my foray into the frigid waters. I will update you all with a day and time so you can come watch and laugh at the stupid things I do for charity!

Ideas, Expansions, and Progress

January is almost over. So far this month, I’m up to $510, which means I will have to eat sushi (my tummybox is doing summersaults at the mere idea), and wear muttonchops for the entirety of February. I already have a decent beard going, so I’ll just shave off the goatee area, and hello 18th century! But if I can get to $1000 by midnight on the 31st, then I’ll have to do a Polar Plunge into the Ohio River. In case you guys hadn’t noticed, this is the coldest winter in about 30 years, and I REALLY hate the cold. So let’s make this happen!

Last January, my cause was Make-A-Wish, and I raised a little over $100. As a result, I had to eat a vegan meal at a vegan restaurant. I’m pretty carnivorous. It was… Less than tasty. I thoroughly enjoyed the McDonald’s I had for dessert. So it’s pretty cool to be off to a better start this year.

In a previous post, I mentioned how I’m planning to occasionally share stories about kids who either are, or have been, seriously ill. I had an epiphany the other night about a couple ways to expand upon that, and to make it simultaneously more engrossing and emotional. I’m not going to spoil what I have planned out yet, because I think it’ll be pretty cool. However, I’ve got to figure out a way to do it in such a way that it does not come across as schlocky, gimmicky, or overly derivative.

Last year for Extra-Life, I thanked donors of $25 or more by letting them choose a game for me to play for an hour, and donors of $100 or more not only choosing a game, but setting a challenge for me to attempt. That’s not going to work this year, since I’m fundraising for this all year long instead of just one month. Since I’m anticipating more than 24 donors of $25 or more (knock wood) over that course of time, it’s just not feasible to use that as bait, since the Game Day event is only 24 hours. So I need some help coming up with ideas for Game Day incentives for my donors. Preferably free, because I’m a poor kid. So if any of you fine folks have any bright ideas, let me know. There’s still nine months to go, so no rush.

And I’ll leave you with these bits of wisdom from Mr. Rogers.

Christian

Today is the third anniversary of my nephew’s death. His name was Christian Liam Connelly, and he was three days shy of turning 10. You can read more about him in my first post.

I briefly mentioned his character and spirit. No words I can string together will ever be able to do him any justice, but here is a feeble attempt to convey just how incredible he was.

I’ve met and known a lot of great individuals in my travels through life. One of my grandfathers was a sailor in WWII. He survived being sunk at Guadalcanal. After the war, he was a pillar of the community whom everybody knew and loved, and he was an all-around great man. My other grandfather was a fighter pilot in the navy and marines. He never saw combat, but was good enough at what he did that he became a test pilot. He is also a great man, wise and funny, and if I can be 1/8th of the man he is, I’ll have turned out ok. One of my uncles works in the Naval Yard in DC, in the very building that was being shot up during that rampage last year. He led a bunch of people to safety. He’s also a volunteer firefighter, and another person everyone can look up to. I served with a plethora of consummate professional badass heroes while I was in the Army. Guys who are crazy enough to run towards bullets and such. And countless other inspirations and great people.

But they all pale in comparison to Christian. He handled his ordeal with a combination of grace, humor, compassion, and steely reserve that you’d normally expect to find in a Navy SEAL, not an 8-9 year old kid. And the fact that, even on his worst days, he just wanted everyone else to smile and be happy seals the deal: Christian is my Hero.

Maybe you have or had somebody in your life like Christian, somebody who is your Hero, who inspires you to make the world a better place. If you don’t, I’m willing to share.