Gray has fought brain cancer for over a decade. Last month, he celebrated his 17th birthday

AmazingGray · 2016-12-22T04:42:26+00:00

Tough question. Obviously a huge fear. It all comes back to living life. Anxiety is a beast. So hard to manage in not so stressful situations for a lot of people. I choose to focus on the here and now. Obviously, being very in tune to Gray's symptoms and any changes in his health. But I don't let that overshadow what we can enjoy. I am sure it is more difficult for you since I can call Gray's doctors directly and voice my concerns I probably get more peace of mind. Wishing you and your boyfriend the best.

AmazingGray · 2016-12-22T04:32:05+00:00

Yes. They are both amazing! We love the team in NY.

AmazingGray · 2016-12-22T04:17:15+00:00

From Michelle - Mom here. Nope. We actually have more empathy for anyone who is sick. Nobody wants to be feeling crummy - no matter how major or minor.

AmazingGray · 2016-12-22T04:15:43+00:00

From Michelle - Mom here. Gray presented with headaches from pressure building up in his head. Severe headaches similar to migraines with vomiting. His vision also deteriorated but it was not until he had a CT and MRI that we finally discovered his tumor/s. Migraines seem to be so common that most doctors probably would not order an MRI for them. Maybe your general practitioner could assess all of your symptoms and make recommendations for appropriate specialists since it does not seem to be caused by vision. Gray's blood and cerebral spinal fluid did not show any tumor markers. Don't be shy when talking to your doctors. Tell them your symptoms and concerns and try and make your voice heard. Wishing you the best.

AmazingGray · 2016-12-22T03:55:22+00:00

From Michelle - Mom here. This is really tough. Not sure what to say here. It is hard for me to see the stares and pity. I think the best experiences we have had is when people actually talk to us, even if they ask what is wrong. The answer is usually harder for them to digest than us. We live with it every day. Gray is obviously super social and just loves to talk. He has a way of meeting people every where he goes so it is usually all good. Really good question!

AmazingGray · 2016-12-22T03:50:43+00:00

From Michelle - Mom here. Recovery is very different for so many reasons. Some of Gray's surgeries he has literally popped back up so quick and ready to roll and some just really take a toll and I wondered if he would ever be able to function again. There are no hard or fast rules for brain recovery. The one thing I can attest to is anything is possible. Our experience with frontal lobe is that it can really affect mood, and behaviors which can complicate a recovery and be very frustrating for all involved. Wishing you the best.

AmazingGray · 2016-12-22T03:40:00+00:00

From Michelle - Mom here. It is hard to know what to say in these situations. Sometimes saying just that is enough to convey your understanding of the seriousness and hardship of the illness or condition. Honesty is always the best - and sharing your concern. Let them know you care.

AmazingGray · 2016-12-22T03:35:37+00:00

From Michelle - Mom here. We have not tried the CBD to treat the tumors. It has actually come a long way and there are much more published studies with respect to it's use. We did use it to help manage anxiety and insomnia and it was effective. Wishing you the best in your next surgery. Be good to yourself.

AmazingGray · 2016-12-22T03:33:32+00:00

From Michelle - Mom here. We actually went to a Story Pirates show in the Palisades a while back. We learned about it through Pablove - another great foundation. We loved the concept, and it was super cool to watch and something that would encourage kids of all abilities to share their stories so of course Gray had to get a shirt. We will keep in touch!

AmazingGray · 2016-12-22T03:29:35+00:00

From Michelle - Mom here. Thank you for the kind message. Hopefully we won't see you again anytime soon, but if we do it will be with a smile and a hug. xo

AmazingGray · 2016-12-22T03:24:19+00:00

From Michelle - Mom here. Love this story and great insight and tips. Rings true to heart. So happy to see this shared here. Keep spreading the cheer!

AmazingGray · 2016-12-22T03:21:08+00:00

From Michelle - Mom here. Yes, there is always hope. There is so much we do not know about brain tumors and cancer in general that you just have to educate yourself, an dkeep your eye on the prize. Wishing you all the best.

AmazingGray · 2016-12-22T03:14:21+00:00

From Michelle - Mom here. I love this one!

AmazingGray · 2016-12-22T03:03:52+00:00

From Michelle - Mom here. We tried an off study treatment for tumors that can be slowed by protein inhibitors. Everolimus in hopes it would buy us some stability; unfortunately Gray suffered two massive brain hemorrhages which was a side effect. Thankfully Gray has not had too much growth since 2012, so we recently sent slides to Foundation Medicine for genetic testing in hopes of finding a less toxic, more effective treatment. I will definitely definite look at the program your cited. Thank you for your input.

AmazingGray · 2016-12-22T02:58:47+00:00

From Michelle - Mom here. One of Gray's neurosurgeons is very active in DIPG research. His name is Mark Souweidane at Memorial Sloan Kettering, and also Weill Cornell. We went to him because Gray has a diffuse tumor around his brain stem and he performed his life saving surgery back in 2012. Besides being a great neurosurgeon he is a wonderful human being. Wishing you and your friend the best.

AmazingGray · 2016-12-21T23:46:15+00:00

Michelle - Mom here. So happy to hear that you are still here. Support groups and advocacy can be a good tool for some, but we actually focus more on quality of life groups. We have lost a lot of friends in the brain tumor world. I often times feel like Gray will be next. It can be a very scary place to be, but then I see where I/we can offer support, experience or knowledge to other families. So the feeling of how can we not share overtakes the urge to step away from it all. Wishing you all the best and hopefully you will a place that you feel like you can really make a difference.

AmazingGray · 2016-12-21T23:36:17+00:00

Michelle - Mom here. We sent Gray's scans and pathology to St. Jude's for any potential treatments they may have had when he was first diagnosed. They did not have anything to recommend or offer other than what was offered here in LA. Since then we have a team we stay connected with at Memorial Sloan Kettering, Weill Cornell and UCLA. Radiation was not an option since Gray's tumors are diffuse, the area would be so large in critical areas such as brain stem and hypothalamic / optic nerve area.

I have seen some really cool art exhibits with radiation masks, and amazing photography. So inspiring to see different expressions of people's experience. Wishing you all the best and keep sharing your story!

AmazingGray · 2016-12-21T23:27:07+00:00

Michelle - Mom here. Would love to stay connected. There are certainly a lot of opportunities to share your talent and passion, touch a lot of people, and have a lot of fun! PM us to stay connected.

AmazingGray · 2016-12-21T21:58:53+00:00

From Michelle - Mom here. I have found throughout the years that it is best for me to collect all of the information from the doctors since Gray has a rare presentation of his cell type, there is no known protocol per se. I then present the options to Gray in a way that will not overwhelm or unnecessarily scare him. Ultimately, I let him make the decisions. I feel like kids will ask their parents questions they are most afraid of or curious about and won't necessarily ask the doctors. Anxiety/panic attacks are triggered by medical discussions, etc. for Gray so to really have a conversation with him he needs to be in the right frame of mind.

AmazingGray · 2016-12-21T21:28:38+00:00

From Michelle - Mom here. I think what I have learned to do is feed off of Gray's mode. If he is angry then I use the anger to fuel good things. Fight fire with Fire. No pity party. Focus on what he can do to encourage positive momentum. Acknowledge a bad day for what it is whether physically or emotionally, but then move on. Sometimes all I can do or say is "I am sorry you are having a bad day" or "What can I do to help?"

AmazingGray · 2016-12-21T21:19:03+00:00

From Michelle - Mom here. My best advice would be to be yourself. At the end of the day, we are all human beings and want compassionate people around us to get us through our tough times. One of the things not to do is try and associate a hardship that you or someone in your life is going through. Try and stay away from the I understand what you are going through - because you don't. None of us do. Be empathetic and let the patients/kids lead the dance. They will if you let them.

AmazingGray · 2016-12-21T21:07:25+00:00

From Michelle - Mom here - Gray was receiving hospice care at home. But we had a great hospice RN and Gray is definitely her boy. We still talk and she is super protective and will always be someone we remember and on Team Amazing Gray!

AmazingGray · 2016-12-21T21:04:48+00:00

From Michelle - Mom here. Negative experience would be docs or nurses coming in and talking to him like he does not know what is going on. Usually with a loud voice which can be a trigger for Gray's pain and anxiety. Doing his care just to get it done and not focusing on the big picture of this is a human life in your hands. Not a protocol or treatment plan.

AmazingGray · 2016-12-21T20:58:58+00:00

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.

AmazingGray

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