I am so sorry.
Be angry. It is unfair that this strong, funny, smart young life is being much too short.
I am angry for you and I don’t even know you very well. I am angry that the world is losing someone like your brother much too soon.
I meant to say something about this yesterday: when we were at The Hospital Formerly Known as Schneider’s on Wednesday, I came across a sign that said September is Childhood Cancer Awareness Month. VERY FUCKING AWARE OF CHILDHOOD CANCER. Thanks for the poster, guys. It almost slipped my mind. You’re a real fucking peach and you have my gratitude. I’m sure there are lots of families going through that ward who need more awareness about childhood cancer. Brilliant decision.
That being said I feel better today than I did yesterday. I guess I’m past the initial shock of learning about this. Telling people is a complicated thing and at this point I don’t have to send many more messages about what’s going on. It’s a relief to tell people and the good wishes are appreciated but it’s also a process that requires you to repeat and reconsider the emotions involved, so it can be an ordeal. So I shouldn’t have to do a whole lot more of that. At the moment I’m less mad and less aggrieved. We’ve all been going through this for a long time, though, so I know all of these emotions are going to rise and fall over the coming weeks and, really, for the rest of my life.
Shirley Ujest mentioned charity earlier and I’d intended to say something about the work my brother and my family have done for the chordoma foundation since his diagnosis. Combined they’ve raised something like $16,000 for research. A good chunk of that was done by my brother auctioning off those bracelets at his camp. He had mixed feelings sometimes about the idea of devoting his life to medicine and dealing with cancer and sickness all the time, but he didn’t have any reservations about helping the foundation. I’m sure we’ll continue to do that. I don’t know if I’ll go to another conference (I went to the last one, in mid-2009) but I always felt ambivalent about going again. It was pretty painful on its own terms.
Aw hell. I had been wondering about your brother, thinking “no news is good news” as you hadn’t posted about his illness in a while. I am so sorry to hear he is so bad off.
May his passing be peaceful.
Hugs from the Zappa/Knig household.
Fuck, man. I remember giving your bro props for getting into the school of this choice… and this? It’s a shock.
I am so sorry Marley23. You guys are great brothers. I hope you get to cherish every moment you have left together. 
This is one of the essays my brother sent to colleges when he was applying. This might not be the final version of the essay or the exact version he used, but it’s close and it’s his point of view. We did give him help with the editing. I didn’t know the stuff about the chapstik until I first read this and I still think it’s a remarkable story.
Sometimes you have to lose a simple pleasure before you truly appreciate it. Most people never think about how difficult it might be to swallow a bite of hamburger or take a sip of water. But I understand the complexity of these actions now, and I no longer take the simple things for granted.
In December 2006, after weeks with a hoarse voice, I learned I had a rare skull based tumor called a clival choroma. Many visits to too many doctors led to three days of ten hour surgeries, two months of setbacks and additional procedures culminating in month of rehab.
Throughout my hospitalization, I was unable to eat due to the removal of the tumor. A gastric feeding tube was inserted into my stomach so that I could consume calories. I worked occasionally with a speech language pathologist to strengthen my ability to swallow, but the real work began upon my arrival at rehab.
I endured weekly swallow studies with the ironic acronym FEEST, weekly I failed. I saw two speech therapists twice daily. Jodi administered electrical impulses to my throat to encourage my pharynx to re-learn the contractions required for swallowing, and Amy stimulated my salivary glands with a sour lemon swab. Relishing the flavor, I often clamped down so Amy could not remove the swab. My mother combed the aisles of the local CVS amassing a collection of chap sticks to give me the semblance of the taste of food on my lips. We played a game trying to guess the flavors with our eyes closed. I was uncannily good and dreamed of the possibility of becoming a food critic. The quick strides I made were directly related to my therapists’ perseverance and kindness.
After four weeks of vigorous therapies, I learned to walk, balance, and write, caught up on school work. Most importantly I began to eat small amounts of canned peaches and took sips of water. The sweet syrupy taste was heavenly. Upon discharge, I continued to focus on physical and swallow therapy. One day, I received the shocking news that I was ready to eat again. With my mother, I rushed into town to a restaurant and ordered a hamburger and steamed vegetables.
It had been more than three months since my last meal. My mom still has the picture on her cell phone of me taking my first mouthful. It captures a moment of sheer bliss, a rebirth. For the first time I felt that I was back and fully recuperated.
Since then, I’ve tried to value everything I have and do, because the simplest actions define so much of our lives. My experiences made me a stronger person, and made me determined to help others: while I was recovering I decided to become a doctor. Over the past two years I learned the strength and focus that will make that goal a reality. I am confident that I will succeed.
Well that just fucking sucks!!!
I am so sorry. You brother and your family sound like wonderful people, it’s not right that any of you have to face this.
My thoughts will be with you and your family in the upcoming months. It is going to be a long ride. Take care of each other and take care of yourself.
I don’t know what to say other than I’m truly sorry, Marley, and I wish you and your family as much strength and peace and happiness as possible.
Wow, that essay your brother wrote is very moving.
I hope he knows how many people on here care.
Shodan was kind enough to set up a separate thread to invite anyone who is interested to donate to the Chordoma Foundation. I’ve set up a Champions page at the site in case anyone wants to use it.
I’m so sorry to hear this. I wish you and your family peace.
He sounds like a very brave man.
Well, shit. I’m so so sorry to hear this awful news. Wishing you all strength and love.
My heart breaks for you, Marley. I’m so sorry for you and your family. Strength and love to you and your brother.
So sad and sorry, Marley. I’m glad I got to read your brother’s essay. I’m not surprised it made an impression on the admissions office.
That essay is a wonderful tribute to your brother and your family. Your writing has always reflected his uniqueness. It completely sucks that the Big Eraser will win this fight. I am so glad you have some of his writing to help you remember him (I know, cold comfort). :(
Why in hell would that hospital feel the need to “advertise” childhood cancer? Bizarre. :rolleyes:
Aww…shit, that sucks. I’m so sorry.
Marley, so very sorry for this news with your beloved brother.
I hope that the time now y’all have together is as good as it can be, and all best wishes and prayers, though never words enough, will help you navigate all trials of heart. Just be there for him; he’s lucky to have that great brother bond with you… shout out “Fuck This” together, and hold on to each other, until who knows what onyond.
I’d been following your brother’s story for years. I really thought he’d made it through.
I’m so sorry.
May your times together be good ones Marley. I’m so sorry.
Oh, Marley, I’m heartbroken. I’ve been following this story for the past few years. I wish every possible comfort, blessing, and break for you, your brother, and your parents.