ewing's-sarcoma

Our hearts are broken once again. Beautiful Kylie Myers died last night at the age of 12. She had an excellent medical team but they were guessing every step of the way because there is very little happening in the way of research for Kylie’s type of cancer. This is true of many childhood cancers.

Today’s rally at the National Institutes of Health and the National Cancer Institute will be dedicated to Kylie and to Mathias Giordano. Both children died because of a lack of treatment options and this is unacceptable. Childhood cancer research must become a national priority.

Hey, guys, so i know this isn’t really the blog for this, but

Basically, one of my sister’s friends and softball teammates, Jazmyne Davis, 14, has been battling a rare form of bone cancer called Ewing’s Sarcoma since she was diagnosed about 18 months ago. Ewing’s Sarcoma has a 5-year survival rate of about 80%, but beyond that the rates drop to a grim 15%. Only in this past year has her condition fallen rapidly. Recently she learned that the cancer has spread throughout her body to the point of being non treatable by conventional methods.

Yesterday she had a huge party with hundreds of attendees complete with a DJ, tons of food, auctions, and a raffle to raise money towards last-ditch options. The community binding together has raised a lot of money for her options, but she’s in a very scary situation right now, and all the support she can get would mean the world.

I know that in the end this is just another “please donate to this person because they’re important to me personally”, but this cancer is only diagnosed in 400 people annually, and the money that can not go to saving Jazmyne’s life could maybe go to combating this mysterious disease. 

So, thanks for reading. If you can donate, I’d encourage you to, just a little, and if you can’t, just spreading the word to someone who could would be a tremendous help.

Up in the picture is Jazmyne and her softball team, the Thunderhawks. Her dad is the guy in the ballcap, and my sister is the one on the far right.

Jazmyne’s GoFundMe is here, and news coverage on yesterday’s party is here.

Thanks, guys. ~t

Did You Know? Jax 2

For Jaximus’ Movement Quote “Here’s to you, kid”, he’s referring to a 17-year old named Joe, who suffered from Ewing’s Sarcoma. He got a chance to visit Riot thanks to the Make a Wish Foundation and passed away on June 5th, 2012. The Jaximus skin was also his favorite, as it went on sale from May 4th to May 18th and all revenue went to the Make a Wish Foundation.

The Ride

written by Julianna Edel while she was in treatment for Ewing’s Sarcoma. Julianna earned her wings in September 2013

It’s a long road
A very, very long road
But I will take the ride

God is in the driver’s seat
I have no control,
But I will take the ride

It may hurt,
The ground may tremble,
My own body might
Fight against me.

But all is not lost

For there is good.
A light, a bright one, at the end.
And I will
Glow

I wish this never happened,
But I am stronger

So,
However long,
I will take the ride

anonymous asked:

I've been battling Ewing's Sarcoma for nearly a year and a half, and it hasn't been going great. This page has really become a release for me. Whenever I'm feeling sorry for myself I realize that every day above the ground is an opportunity to turn someones day around. Thank you for helping me realize that.

Dear anon, let me just say - wow.. You’re such a strong person. Such an inspiration. I really hope wherever you are that you’re going strong, and I hope that you will win this fight! Lots of love and strength from me to you, Xx Aster

For Kyle♥

 

I’m not sure if you remember me posting about him before, but he’s got his own page on my blog so, yeah. But this is Kyle. In Winter of 2009 he was diagnosed with Ewing’s Sarcoma, cancer. Before that, he was the happiest person anyone could ever meet. He had amazing grades, he was a great singer. Everyone loved him. He was just an amazing kid. And one of my best friends. When he was diagnosed, his mom needed to tell the school. And the school made an announcement… I was so devastated. The school made bracelets about him, everyone sent him cards and he was an instant celebrity. He was so brave and strong. He recovered and came back for the 2010-2011 school year. Everyone was so happy. I was SOO happy to see him join chorus again. My partner in crime (: We had the best year last school year accept for the whole thing with his girlfriend. We had science together and he was just as I remembered him. We left that school-year to move onto the high school. He was so excited. Now, at the end of my summer. I hear that he is back in the hospital. The cancer came back. I’m not able to sleep tonight because I’m so worried about him. So, so worried. I’m bawling my eyes out as I’m typing this. I just can’t imagine high school without my partner in crime there with me. He knows he has his own page on my blog. This would be amazing if this got notes. So I could be proud and show him that he isn’t as alone as he feels. He’s talking about suicide guys. Please, I just want this to get notes. Purely for Kyle. Because this kid is my best friend. And he needs to find strength.♥

I love you Kyle. 

-Megan.

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Last April, Kylie Myers was supposed to sing with her sister Meredith at a school talent show, but her battle with Ewing’s Sarcoma prevented her from doing so. On April 18, 2014, Make-a-Wish invited her to sing at their Gala. Here’s a special message from Kylie’s parent:

“Here is the video of Kylie & Meredith singing. It was a magical night for Kylie. This is the sound check as it was much clearer video. For those that don’t know, she has a tumor in her right lung that causes shortness of breath and a persistent cough. But she didn’t falter or cough on-stage at all!”

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Humansareawesome submitted to faithinhumanityr.

Thank you so much for submitting this, this is amazing!

Fuck 😔

So I saw my orthopedic surgeon today, they did an xray on my leg and looks as if there are some issues. On the xray the top end of my tibial rod near my knee has shifted and like hollowed out a section of bone around it and also looks as if there is a fracture near my knee joint. So the most likely scenario is that the non-Union point in my leg caused the instability and movement which is causing so much pain, they also want to look into if there is any infection which could be bad. Lastly there is always a small chance that there could be a recurrent tumor in my leg, they said it is highly unlikely but they obvs can never rule it out. So now I am having a CT scan on Monday where they will wrap me in lead to protect bub from radiation and will find out next Wednesday what has happened and what the plan of action is. Regardless I am on two crutches again. So yeah pretty shit & scary afternoon 😔

Please don’t be another cancer

Chemo round 1: Ding Ding Ding!

So I’m currently laying in bed, about two hours into my first round of chemo, annnnd its an interesting experience. To start they told me I would be out be able to go home tonight and come back tomorrow to get my chemo injection taken out (they give it to me over 24 hours to make it easier on my heart) then they told me I have to stay in the hospital until Saturday morning, fine whatever. Now I have to stay until Sunday morning, suck, but again, whatever. Back to chemo though, its an odd, sort of paradoxical experience. Take right this instance for example, I’m laying in a fairly comfortable bed, in my own clothes, watching episodes of The Daily Show and videos of Watsky performing spoken word poetry. They have a huge list of movies I can watch, theres a cafeteria with food I can order anytime I want, I can get up and sit in a chair, walk around the floor, go to the bathroom, anything I want, and I feel fine. Yet at the same time, as a constant reminder that you are in fact, well dying, is this big pole with bags of poison that are being pumped directly into the largest artery in your body. By the way, I am fascinated by this port in my aorta, there’s this piece of machinery inside of me that allows instant access to my aorta, which would probably be great if I was a heroine addict. It also means I only have to be stuck once per visit, no IV’s to draw blood or inject drugs, they access the port once and im done! It didn’t even hurt to access, it’s amazing. Anyway, thats all I wanted to say, chemo is odd, carry on everyone.

OK, so, I agreed to do this crazy thing called an Ultra-Hike with my mom in October. It’s for children’s oncology research charities (namely, CureSearch, which I adore because they do research on Ewing’s, which is what my brother has now twice struggled with–and will likely eventually take his life when it comes back a third time, which sadly is all but unavoidable).

But, here’s the thing: I’m in ehh-shape. I’ve gotten by on my metabolism (and good looks) my whole life. I work out very modestly (maybe 10 minutes a night, when I’m really on my shit). 

Here’s the kicker: It’s a 30-f'ing-mile, one-day hike!! Let me repeat that: 30-god-damn-fucking miles in one day… Right now, I can’t do that on flat ground. When I did three days in the backcountry of Shenandoah, we did 7.5 miles the first day (though, it was with ~40-pound packs through mountain terrain and talus slopes), and my legs became Jello by noon the next day.

So, then, I have this summer to get into the best shape of my life. I also have to quit smoking. Look, I’ve been looking for a reason to do all of this. And, cancer can suck my dick–particularly children’s cancers. Further, who knows, maybe the extra few bucks I can churn up by doing this hike with my mom (who will undoubtedly kick my ass on the trail…she’s near 50 and does triathlons in her sleep) will be the money needed to find a cure for Ewing’s. If we can find a cure in the next five years, maybe my brother’s grave needn’t be dug yet.

If getting in shape and quitting smoking can accomplish any of that, hell, I’m down to make another trail my bitch. 

Excuse the lack of eloquence–it’s a Monday morning. 

giveforward.com
Miracle For Maria

Hey followers!

If you haven’t already, I’d like to encourage you to take a moment and check out this link. One of my very best friends, Maria, is in dire need of help. Last summer she was diagnosed with Ewing’s Sarcoma, an extremely rare bone cancer. We are taking donations online, and by mail*, so please take a minute to read more about her story, and donate what you can. Every dollar counts!

*message me if you’d like to donate using this method

Thank you so much for you time and donations; they are highly appreciated!

-Mari

Some people

So there is a family member of mine that has had a lot of personal issues lately and I have been dragged into the mix as her comparison for pain.

Anyways she has summed up my last 2 years as “early stage low grade bone cancer that hadn’t even spread yet”

It never ceases to amaze me what some people allow to come out of their mouths…..

I'm No Superman

There has recently been a major development in my life, one which I have announced on every social media except Tumblr. Don’t worry, that’s only because I haven’t been an active user for a while, nothing personal Tumblr followers whom I do not know and have never met. But about this life altering event, I am simultaneously torn between wanting to blog my way through my experience with Tumblr, and not wanting to acknowledge it in at least one small aspect of my life that I can control. One part wanting to work through it and one part wanting to deny it for the small amounts of time that I can. The nature of my problem does not lend itself to such endeavors however and I can’t ignore this new development. I guess what I’m trying to say is that for my own well being I need to try to work my way through this and stay positive about it. I’m not an open person, I like that about myself, and I like that I don’t have many people I actually know following me on Tumblr, in fact I’ve thought about blocking anyone I know to make this easier for me (jury’s still out on that one real friends, but you may never know that). I feel like, I’ve been told that, I will need a place to relieve the stress though, and this is as good a place as any for that. But more than for my current self I want to document this time in my life for my future self, I want to be able to look back on this time in my life and see how far I’ve come, I will have earned that…

So what am I being so melodramatic about? Good question me, allow me to fill you in. About two weeks ago I was diagnosed with Ewing’s Sarcoma Cancer. Thought I had a bulging disk, had an MRI, got a phone call that I needed to see a specialist, boom. Cancer. It still doesn’t feel like its actually happening to me, because even though cancer is so prevalent anymore, it just doesn’t happen to real people ya know? It sure as hell doesn’t happen to 18 year old males who are trying to finish up their fist semester of college. Whatever, we caught it early, it hasn’t spread to any other parts of my body, I start chemo next Thursday, and i’m going to kick cancer’s ass. I hope you don’t mind me bitching to you about it, and I apologize about the preachyness that permeates this post and any that follow (including the title, that song came on while I was typing this and the irony made me laugh) but hey, fuck you, I’ve earned it, I do have cancer after all.

fundme.com
Scout Rodgers Fund - FundMe.com

Jeff Lovelady is raising funds on FundMe.com for Scout Rodgers Fund. Scout has had a tumor removed and is going to be going through chemotherapy and radiation and this is going to be used to provide personal things that they may need during this time.

Hello! Doctors are pretty sure that my friend’s sister has Ewing’s Sarcoma. It’s 2 days until their deadline and they still need just under $2,000.  Please consider donating and reblogging to signal boost!