Hi my name is Monica.I am 35 years old and I was diagnosed with ESRD on January 14, 1999 at age of 17 years old due to Hypertension that I didn't know i had. I currently attend dialysis on Monday, Wednesday, and Friday. In 2001 I received a Kidney Transplant that lasted five years. After it failed I immediately began testing at Emory to be listed again and began to train for Peritoneal Dialysis and did it for three years after catching peritonitis I returned to the clinic where i currently receive treatment as of today i been waiting for a Kidney 10 years. I really would like to began living a more normal life so I can council and educate other patients that are on and new to dialysis. I currently talk with many of the new patients at my clinic and other patients that need my advice on things they are dealing with while on dialysis. In my spare time i usually check on patients that are sick in the hospital and follow up with patients I have talked to I also participate in a mentoring program. If you interested in getting tested follow instructions on the picture and don't worry if your blood type don't match ask Emory about cross match program. when you read this story please share this page.
Our Robert is a star today! I am so grateful for all of the amazing people that came together and donated their time, efforts, love and talents to make this happen. Thank you to CL Casting for making magic happen in 10 minutes flat by connecting us to Andy Rusk and donating your team, time and hearts once again to help us pull the whole day off. Andy Rusk for then connecting us to the best group of stuntmen, with the biggest hearts in the world, and with Southeast Movie & Stunt House for donating their amazing space for us to use. Wes Brawner of Pennywhistle Creative and Wes Brawner Events for once again donating his time and talent to video and document this for Robert and BTC. Neal Carpenter for helping me get the perfect lighting and shot! Please know your efforts are greatly appreciated and valued. Even if you are just pulling on fishing wire O.j. Greene I could NOT make my crazy ideas come to life without each and every one of you. These things take a lot of amazing people to pull off and I know each of you will forever be changed by this amazing boy. He truly is a superhero and deserves all we can do and more. I hope we get to work together again soon to make more magic happen! Shannon Parker Greene Jamie Lynn Catrett Joe Nelson Jared LosanoEmily Brobst T. Ryan Mooney Bobby Jordan Marvin Ross Elizabeth Davidovich Brandy Angel Photography, LLC.
I was recently reminded of a promise I made to Robert when he was in the hospital last year. He was going to miss our fantasy photo session because he had gotten admitted to the hospital yet again. He had requested being superman and I had gotten the costume just for him and he was really upset about the whole situation. I told him it would be fine, and that when he got out I would make him fly like superman for his photo session. I intended to make good of that promise but I had no idea how or when I would be able to. Thanks to some amazing friends and some new friends with huge hearts, we did just that.
Robert has had yet another eventful year since he was initially diagnosed with leukemia at 4 years of age. When I saw this update from his mom on Facebook I knew I had to do something to bring as much joy to his life as I could and when his mom gave me the green light to make it awesome I could not wait to see how it all played out.
"Finding the right words for a post like this is tricky. Too little information and people jump to their own conclusions (panic) or press for more. Too much information and people still panic, and what you share is bouncing around everywhere. So, I’ll do my best to find the balance.
Robert had his 60 day post t-cell bone marrow biopsy and spinal tap. It all initially came back clear with no evidence of any Leukemia cells. However a few weeks later we learned that he no longer has any of the fighter tcells remaining in his body; the trial has failed. The Seattle group has provided the stats to our Atlanta team to assist us in developing a plan to move forward. Their studies indicate that any child who loses the cells so soon after transplant will relapse, fast and aggressive. All agree that Roberts relapse is imminent, but we can't know exactly how severe it will be. We will likely use chemo to keep the cancer at a manageable level as we enter the next treatment option, whatever that may be.
So, what now? We are currently attempting to get in the Car-t immunotherapy trial at CHOP. Although it’s similar to Seattle’s, it’s different enough that it might work or at the very least work longer. If this fails, then a Bone Marrow Transplant would be discussed and that my friends would be our all in. A BMT is not a great option for Robert due to the severe liver damage from years of chemo, but if needed a less toxic version may be considered.
Our hope will never falter, though now it seems more guarded. Dr.s are now now kindly suggesting that we enjoy the time that we have with our Son. We no longer talk about statistics or numbers with others. We just keep working the problem the best that we can. We feel as if the cure that we we so desperately want for Robert is quickly slipping from our grasp, but we are trying to remain hopeful that we will still win. As of right now Robert feels great and we plan to take advantage of that and enjoy every second of every day. We will never give up!
Robert is happy, upbeat and enjoying everyday. Negativity or sadness is not a part of his life right now. He is currently enjoying a rare break from pain and discomfort. He looks and feels better than he has in a few years. Per his request, all he knows is that more treatment is ahead. If you happen to cross paths with him, keeps your tears to yourself...he'll likely only have laughs to exchange with you for a while anyway."
After Shannon reminded me of my promise we began thinking of ways to get this special boy off the ground. Then as fate would have it, I got a well timed text message from Jamie Catrett asking what I was up to. Jamie has a casting company called Catrett and Associates Casting that hosted a fundraiser for us last year. Since then we have become friends and she and her employees have worked together with Be The Change-BAF on several events. When I told her the story she immediately replied, "Give me 10 minutes." Before I knew it I had Hollywood Stuntmen laying out a plan that would make dreams come true for Robert. Within a week we were all together at Southeast Movie & Stunt House and getting to witness Robert fulfilling a lifelong wish of being a super hero. I have never seen him filled with so much joy and energy. His smiles will forever be in my heart, as well as all the people that came together to make this happen. I immediately got on youtube to learn some new editing techniques to bring the hero to life.
Thank you all so much for using your gift to make a dream come true. You truly are the change this world needs.
Follow Robert's journey at https://www.facebook.com/Rathat04/
See more photos at our Facebook page. https://www.facebook.com/pg/bethechangebaf/photos/?tab=album&album_id=628875423987074 and a link to the full album http://www.brandyangelphotography.com/p618328535
Stay tuned to Fox5 Atlanta for coverage by Ron Gant!
Ever since we went to Children's Hospital of Atlanta for Christmas I keep thinking about the older patients that we met that day. They seemed so lonely and bored. Since most patients are younger the programs at the hospital are veered mostly toward them. Admittedly our fantasy photo session that we are planning to do will be geared mostly toward the younger patients as well. I have been racking my brain to find a way to do something for the older patients. What I have come up with is a workshop to teach them photography and editing at the hospital. We could even allow parents to come if space allows.
A link to our Facebook Fundraiser. https://www.facebook.com/donate/10154940110783875/
It has been a crazy year with lots of ups and downs for our features. Baby Hazel found a living donor match and recently had BOTH kidneys removed in preparation to receive her life saving kidney and is doing great! Her new kidney will be here just in time for Christmas. Monica had a terrible set back for awhile and was gravely ill but managed to be the warrior she is and bounce back and wake up from her medically induced coma and find out she is in REMISSION! Robert the Great is in Seattle receiving a new T-Cell treatment that will hopefully be the answer he needs to finally beat AML once and for all and help further the use of this amazing treatment for others! Peyton RANG THE BELL on WORLD news for everyone to see as she completed her LAST TREATMENT! Cadence has continued to be cancer free, fight for awareness for Childhood Cancer and inspire so many everyday. Lake's picture continued to be shared this year all over the world creating awareness for childhood cancer and the truth of what happens when we lose a child as amazing as Lake. Even though he is not with us his photo and story continue to reach and touch people eveywhere.
You make this happen. Please keep sharing our features stories and help those I need of living kidney donors find their matches and help raise awareness for childhood cancer and it's grossly underfunded research. Just clicking share may seem small to you but look at the good it has done in ONE year! Donating to the right people who fund research is crucial, CURE Childhood Cancer, St. Jude, Be The Match.org. Sign up to be a bone marrow donor! It's so easy! You don't even have to leave your home! They send the test to you and you send it right back! SAVE A LIFE! www.bethematch.org, www.dkms.org, just a couple to start. Donate BLOOD, donate PLATELETS or PLASMA. Continue to PRAY for them all. YOU have the power to make a difference, even if it's just a well placed smile to a stranger. Don't ever forget that. You will be giving something just as valuable to yourself I promise.
Let's make 2017 even bigger and better. We have so many more opportunities that have opened up for Be The Change-BAF this year and we hope next year will bring about amazing change for those in need. You are a big part of that, just by being on our website and reading these stories and caring about these people. We are the change the world needs, and our ripples we create grown and exceed all our expectations. Be kind, be humble, be loving, be the change.
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