29242
I am Gray. 16 years old and fought brain cancer for 10 years. I've had 17 surgeries, 5 chemo regimens, and been on hospice 3 times. Ask me anything!
"Hi Reddit. I'm Gray. Or Amazing Gray. Or Captain Gray the Lord because I'm the captain of the pirate ship. When I first found out I had tumors I was scared, and I have that same feeling today. I was afraid that I might lose function in my body or that I might die from it. I am thankful that I am still here and it hasn't taken away my life and my spirit. I try and stay positive but I still get nervous about it but I am happy that I am surrounded by people who are always looking out for me."
Joining Gray is Michelle, or Lady Crimson, Gray's mom and co-Captain. She will help Gray on any questions he might struggle with and knows all the details of his medical hardships.
My name is Joe, or Joe The Ruthless Breakdancer. Gray's friend and First Mate. Gray and I met through CoachArt, a charity that pairs volunteer mentors with children who suffer from chronic illness. We've been hanging out for 9 months now and have truly bonded. We made this video which pretty much sums us up:
https://www.youtube.com/watch?v=RA65yd8SOrI
Lastly, this is Gray's CoachArt donation page. It's a truly wonderful organization that provides so many children wonderful opportunities to live life, learn a skill, and make friends. Check them out!
https://my.coachart.org/campaign/amazing-gray/c111376
Proof: https://i.redd.it/8q1r10zmat3y.jpg
EDIT: Hey guys, it's 9am here in Los Angeles. Gray has been a trooper but is a bit wiped out so we are going to sign off. Wanted to really thank everyone for all their questions and interest and donations to CoachArt! From the Captain himself: https://www.youtube.com/watch?v=tMl8h-wxQkI
EDIT #2: Michelle is going to log on later and during the week to try and respond to some outstanding questions, especially those concerning family support. She will make sure to identify that it's her responding!
AmazingGray5041 karma
I would like to spread awareness about brain tumors. Support the fight against childhood cancer. May is brain tumor awareness month. I'd like for people to support it more especially during that month
whoisjcon1807 karma
Hey Gray, what would you say is the thing that keeps you so positive in the face of having dealt with this for ten years?
AmazingGray3168 karma
Gray said he wants to video his first response. We are uploading it and will edit this link shortly!
AmazingGray787 karma
Mom and I don't get gifts for each other for the holidays because we thought it would be great to adopt families for Christmas instead of exchanging gifts. It's nice to get gifts but my favorite gift to get is spending time with people
ThisLookInfectedToYa823 karma
Good morning Gray. I've been helping my Wife through a similar situation for a bit over 5 years now. Four bouts of various types of cancer (gastrointestinal [neuroendocrine carcinoma], cervical, ovarian and now, just last month, stage 3 melanoma) How have you dealt with the depression and/or isolation that typically comes with this ordeal?
Michelle, as a caregiver, same question.
AmazingGray838 karma
I feel like I get depressed and alone but I always remember that I have people to help me through those moments. And when I remember that, it makes me feel peppy again. That there are people out there that are cheering for me and it helps me not feel alone and conquer what I'm going through. From Michelle, keeping him involved with people with similar conditions. Like CoachArt. When you do things with CoachArt, there are families and kids with similar situations and we get to be together as a group. Creating opportunities to share within the foundations we are involved with is an outlet for him to share. It creates a support network Gray says I like CoachArt because it helps me meet people who know how I feel and it makes me feel better because other people really don't know how I feel
AmazingGray1399 karma
To find a cure to brain tumors. I have lots of dreams but that's my biggest dream. I think 7 kids die from a brain tumor each day. I could be wrong about how many but that's scary to me
mwrscs1520 karma
Good morning Gray! Hopefully you're having a good day. What do you feel most proud of?
AmazingGray1069 karma
Hi! Just the fact that I'm still here and still going. Any time that I'm feeling down and having a bad day, I remember that I'm a brain tumor survivor and that's not by luck. It's a little luck but we've fought hard
LiamIsMailBackwards336 karma
Fortune favors the bold. Gray, you truly are an inspiration and I have no doubt that your positivity will have a huge impact on not only your friends and family, but this community and countless others as well.
Keep being an amazing person!
sidneythree366 karma
Hey Gray, I'm a 17 year old battling brain cancer now. Do you have a favorite doctor/nurse that you love talking to? And what advice would you give to me or others who are battling childhood cancer?
AmazingGray524 karma
Just try not to think about what you have. Let your family or whoever take care of that. Just focus on being a kid. You know who I got that from? M. O. M.
Jagerschnitzel343 karma
Hi Gray, thank you for sharing your experiences with us!
What has been the hardest part of dealing with your medical issues? Would be interested to hear from your mother about this as well.
AmazingGray611 karma
Just going through treatments one after another after another after. Every time I have an MRI or surgery, I'm wondering "am I gonna make it or am I gonna die? Sometimes I wonder if this is the last one." Mom said hardest for Gray has been the anxiety and anticipation of going through treatments. That's ALWAYS been the hardest.
PvP_Noob392 karma
Dude I know the feel on MRI's. I had one about 6 weeks ago to measure a tumor in my eye socket that I am getting cut out in about 3 hours.
45 minutes of banging noises to where you can't focus sucks. Sorry you have had so many at such a young age.
Best of luck to you.
UPDATE Next Morning
Thank you all so much for the well wishes. Here I was trying to commiserate with the Amazing Mr. Gray and y'all went out of your way for me. As I type this my left eye is essentially swollen shut this morning and between that and the bandages I can barely open it but I am not experiencing much pain.
The surgery itself was anticipated to be 1 hour but lasted 2.5. I was partially sedated for the whole thing and used lots of local anesthetic. The Dr. told my wife I was very talkative throughout but my recollection was sharing what I could feel as he was working, asking questions about the procedure, and giving relative context to one of the complications that came up.
As for the tumor itself. When scanned via MRI with a follow up CT it was estimated to be about 1.5cm and it was apparently a little larger than 2cm when removed. It was also further up and behind my eye in the socket which required the doctor to move my eye before he could fully remove the tumor. The other small complication was the tumor had a large vessel providing it a strong blood supply which had to be dealt with. Those two factors are what extended it from 1 to 2.5 hours.
As for my prognosis. I should know in the next week or so. The good news is, the thing came out entirely in one piece and it did not appear anything was left behind. In the event it was malignant I should be in pretty good shape.
Again, thank you all for the well wishes and support.
OnlyPakiOnReddit277 karma
Hey Grey!
First off, just want to say that you're an amazingly strong young man for enduring what you have. I just lost my mom (4 months ago) to cancer after a 4+ year battle. She's the strongest person I've ever known, and I can only imagine what it was like for her, but I'm so happy that you've fought just as hard as she did, and you're still at it! People like you two inspire me and millions of others to never give up in life.
Also, what are your top three favorite games?
Happy Holidays!
AmazingGray357 karma
That touched my heart, thank you. Skip Bo, Monopoly Deal, and Uno Attack. This is from Joe, I can tell you first hand Gray is savage in Skip Bo
skullheadarmy223 karma
startingphresh189 karma
Hi there! As a current medical student/future physician, do you have any advice for me either about a really positive experience you've had with your doctors or even a particularly negative experience that you'd want to share with me?
Thanks for doing this, hang in there and keep fighting! I'm on your side, fighting against cancer, just from a different angle! You are inspiring with all your positivity!
AmazingGray308 karma
Yes I do. The patient is always right. The patient AND their parents are always right. Listen to your patient's parents and also listen to their parents. Don't look at them like they're crazy. Just trust them. They know what they're going through more than you would know because that's why they came to you
AmazingGray978 karma
Making moments out of everything. If you're saying something can't be done, someone else is doing it
AmazingGray81 karma
Between Grim Rocket and Grim Chaos, Gray said he likes Grim Chaos better. But it's close
loughnot168 karma
Good morning, Gray! Thanks for doing this. I think you're awesome and inspiring. Is there a way I can keep following you to hear/read about what you're up to and be able to say hi? PS: Joe is way more popular since he started hanging out with you. Good job teaching him how to be more fun.
AmazingGray136 karma
That is funny about Joe. I have a Facebook site that I can receive messages: https://www.facebook.com/Amazing-Gray-117720188251784/?fref=ts
Texasthrowed210160 karma
Good Morning Gray, do you believe in an Higher Power? Me being in your situation, id always think "Why Me?"
AmazingGray491 karma
I used to feel like God chose me to pick on me. I sort of still feel that way a little bit. Everything happens for a reason but I wonder why God chose me to have the brain tumor? Michelle says "One day Gray said, you know what mom? Sometimes, bad things just happen. And not for a reason"
WudButton131 karma
Good morning awesome folks! As a fairly new father, having something like this happen to my daughter is one of my greatest fears. So I guess this question is aimed more at Lady Crimson: What were the early signs of Gray's illness? What led to the discovery of his tumors? You guys are great and I wish you all the best in the future. Thanks for doing this.
AmazingGray251 karma
From Michelle, something seemed off. I would say motherly instincts. Something seemed off that I couldn't figure out and I would take him to the pediatirition. It was pressure in his head that would build up at night and he couldn't sleep. He would wake up very disoriented. After he would be up for a while, he would be fine. Anything that is persistently off, he was symptomatic at four. I didn't get him diagnosed until six. You kind of have to go by developmental milestones. But it's hard to tell at that age and you don't want to take him to the hospital all the time
From Gray, people thought my mom was crazy. But she was right
FinalBossofInternet123 karma
This is probably going to get buried, but I wanted to let you know that when I was diagnosed with a brain tumor at 24, I became really jaded and relied on gallows’ humor to cope. I am 27 now and can be rather bitter over how much I have lost (peripheral vision, being able to drive at night, decent looking hair/skin, and a modest credit score) over my diagnosis and subsequent treatment.
Reading your AMA has blown me away with how positive and insightful you are at 16. You have a lot to be proud of and I hope your co-captain knows that she raised a wonderful young man.
Per this subreddit’s rules, I have to ask a question : when you went through chemo, did you have Temodar (the oral chemo?) Have you found it to be more mild than intravenous chemotherapy?
AmazingGray70 karma
I'd like to say thank you and I'm sorry to hear about what you lost. But just remember, there's always a silver lining at the end of the rainbow!
AmazingGray35 karma
Another answer from Mom here - Gray did have the oral temodar. It was not effective for his tumor so we only did it six months. It was hard to tell at the time because he was having so many pressure issues if the nausea and vomiting was from chemo or hydrocephalus. Because his tumor could not be completely resected and he was not a candidate for radiation we have almost always had to rely on chemotherapy agents. Temodar was not easy but it could have been everything combined. Wishing you all the best in your journey.
Narcolplock112 karma
What are your opinions on medical cannabis and what is holding you back from CBD trials?
AmazingGray249 karma
From mom, we actually tried it like five years ago. Had to get him a card. We didn't try it as a treatment, we tried it for anti-anxiety and neuro calming effect. At that point, they didn't have all the blends so the amount they were giving was so much that he would be knocked out. That prevents us from being able to maintain accurate neuro status and that's very important
AmazingGray236 karma
Rock and roll! My favorite song to dance to is "I Love Rock and Roll"
He just sang out the chorus, too
avocadogirl1590 karma
I can only imagine the pain you've been through. If I could ask what exactly is the kind of brain cancer that you have and are you currently in remission?
AmazingGray159 karma
From Michelle - he has diffuse fibrillary astrocytoma throughout the brain and spine. He is not in remission, we do the best we can to manage tumor growth and all the effects through chemo and surgeries
unicorninabottle79 karma
Hi Gray! Do you have any weird favourite snacks? I personally like eating anchovies straight from the little jar sometimes, maybe you have something new for me to try :)
AmazingGray172 karma
My favorite thing right now is cauliflower rice mixed with eggs and bbq spices. Yeaaah
romes883371 karma
Yo Cap, what's the best hospital food you have ever had? Way to keep battling bud! You are tougher than I.
AmazingGray144 karma
Grilled Cheese!
EDIT: Like, their grilled cheese's are the real deal. If I had two places to choose to get grilled cheese, it would be In N Out or the hospital
Paraphenalia66 karma
Morning gray, hope your day is going well. If I may ask, what advice would you give someone who has just been diagnosed with brain cancer?
Also thank you for the ama!
AmazingGray96 karma
To not worry. That you're in good hands with your family and your doctors. Make sure your family knows that they need to trust what they believe in and not always trust what the doctors say. And your family will always take care of you no matter what you go through
Kaospassageraren63 karma
Hi Gray, it will be interesting to read your responses! After living with this for many years, what would you say are some of the most common misconceptions and/or preconceived notions that you face regarding your situation?
Also, what are your favorite movies? Take care!
AmazingGray143 karma
People think that I'm fine sometimes. "Oh, he's fine, he's not chronically sick." I just want to be heard and my story be heard. Michelle says "I think people think you get cancer and they take it out, you get treatments, and it's done. But it's not like that, he's been in and out of treatment for 10 years. Some cancers are too dangerous to remove"
EDIT: To add movies, mom said Chicken Run used to be a favorite. But Gray said emphatically that it is no longer the case. He said "I love Zootopia and Rudolph the Red Nosed Reindeer"
Fuzzykiwiwolf56 karma
Hello Grey! I'm 31 and I have cervical cancer, gone through two rounds of chemo, 5 surgeries, and hoping to get on a clinical trial since it spread to my lungs. I too, am often asked how I'm so positive. I tell them the alternative is depressing. I can't think about how horrible everything could become. I'd just be a sad depressed person. I too get very anxious with treatments and tests. I'm always thinking "is this where I find out there is nothing else we can do?" My mom gets anxious as well. So far I have a way forward and I focus on that as a positive. Keep up you sprints and enjoy Christmas crafts! I do crafty things to keep my mind busy too :-)
AmazingGray84 karma
If you're not positive, negative things are going to happen. You get what you put out. Think positive and positive things happen. Good luck to you! EDIT: From Michelle, there was a pivotal point in which I decided that we were going to live, we were not going to let his treatments take over and stop us from living. You have to live your life. Why fight for it if you're not going to actually live for it?
AmazingGray110 karma
Dodgers! I have friends that play on a little league Dodgers team so that's why
jarcher247 karma
Hey Gray, I'm a neurosurgery resident currently at our children's hospital and work with kids with brain tumors. What are some things that you and your parents appreciated (or maybe didnt appreciate) from your neurosurgeon? It's an understatement to say what you and your family have been through is challenging, but your attitude is awesome. Keep it up.
AmazingGray199 karma
From Joe, I actually have a classic Gray story. He was beating me pretty bad in Skip Bo one day, I was completely out-strategized. I said "Gray, you know that you are really smart, right?" He responds, "well, I do hang out with a lot of neurosurgeons."
AmazingGray11 karma
From Michelle - Mom. Neurosurgery is one of the toughest aspects of managing Gray's care because his hydrocephalus/pressure does not present on scan so he needs to be treated based on clinical status. I have learned when Gray needs a shunt revision and when we have a new Neurosurgeon they need to get to know Gray. Having a Neurosurgeon that listens is key!
Bkaps38 karma
Hey Gray,
Watched your video, thanks for being pretty awesome and having way better dance moves than me!
Besides the dancing, how do you like to spend your free time? Any favorite movies or books or hobbies you have?
AmazingGray72 karma
Doing arts and crafts. I like to do all arts and crafts.
EDIT: From Joe, his Pinterest username is "michelleandgray" He loves Pinterest!
ChefBoyarDanny33 karma
Hey Gray, I see you've chosen to rock a double bracelet and middle finger ring, which I dig. What is the story behind the ring? What other pieces do you have in your collection?
AmazingGray84 karma
That's my bling. The bracelets remind me of a special moment or special person. The ring I made out of a milk carton cap. Every pirate has rings so I have to have a ring
kdoxy33 karma
Hey Gray, how do you keep up with your studies? And is the a subject that is your favorite?
TeriyakiDon32 karma
Hi Captain Gray! Do you play any kind of video games? PC, Console, or mobile, it doesn't matter. If so, what kind of games are you inclined to? First person shooters? Or Racing games? or Role-playing games?
AmazingGray64 karma
Super Mario Bros for the Nintendo DS. I play food games on my iPad. Cake Mania is one
Cailaquinn28 karma
Hi Gray! You're story is inspiring. Love that you are so positive. What would you say is your fondest memory or the moment in life when you were happiest? ✨
AmazingGray100 karma
When I'm with my family. Because there are some kids who don't have a family. I'm just lucky to have a family that loves and cares about me
flyersfan13928 karma
Ayo Captain Gray!
If you won a million dollars what would you do with it?
Texasthrowed21026 karma
Hey Gray, whats your favorite Movie/Tv show? ever thought about going Heisenberg and just cooking Meth?
AmazingGray72 karma
Zootopia for movie and Young Justice for TV show. It's like the Justice League but they're kids. So like, Martian Manhunter's daughter and the Flash's son
pnandgillybean41 karma
Did you hear there's gonna be a new season of young justice? I'm so excited for it! You've got great taste in shows, friend!
The_Withheld_Name26 karma
Do you get tired of people focusing on cancer as a defining quality of you? I mean, would you rather people talk about something else more often with you?
AmazingGray38 karma
I half think people just associate me with cancer. But mostly I think people think I'm a normal kid and look like a normal kid. Part of it is because I don't have the typical signs like losing my hair and stuff. It's feels bad when people give me a weird look like they're scared of me when they find out I have cancer. Sometimes my doctors focus on the bad even though I know they are just doing their job and trying to make me better. Sometimes I don't like being at the hospital because of the negativity. Sometimes I feel poisoned with negativity. Outside of the hospital I feel like I can breathe. The negativity is like smog and I'm breathing in the smog. It feels nice and good not to have negative thoughts
PrimateOnAPlanet25 karma
Med student here. What was the thing staff (docs, nurses, etc.) did that made the biggest difference in your life? I don't mean treatment-wise, but rather something they said or did to ease your suffering when you needed it most?
AmazingGray13 karma
From Michelle - Mom here. I think the best experience that we have had is when the doctors came in together and reassured us that at that point they did not know for sure what was going on (fever situation) but they were determined to figure it out and not giving up on him. Just to let us know that they care.
AmazingGray28 karma
I don't know. I'm am not used to the new Pokemon. I'm used to Pokemon black and white. My favorite is Mewtwo
AmazingGray14 karma
Batman Beyond. He's a young teacher that works for Bruce Wayne because Bruce Wayne is too old to be Batman any more
Drunken_Economist7436 karma
Welcome to reddit! If you could tell one thing to every person in the world, what would it be?
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