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This is copied from the CaringPage of Maya Chamberlain. She's the little girl I posted about last year who has the Indian mama and the Euro-mutt Daddy, and was in need of a bone marrow transplant. She's doing well right now -- it's still a fight, but she's doing well. Please read this, and if you're NOT registered to donate bone marrow, go to www.marrow.org .
Day +290…”I get to…” 4 yo angel girl ...
When we first came to Cincinnati in December ’09, Maya had many appointments as part of her pre-transplant work up. One of our very first appointments was for a brain MRI which was scheduled at 6:15am. We were running a bit late so we decided to valet park. The parking attendant said to us that he would like to share a story with us if that was OK. At first I was a bit hesitant since we were running late, but I didn’t want to be rude so I said sure. He started by letting me know that he felt compelled to share the story with us for some reason. Just moments before we pulled up to park our car; he had just parked a car for a woman whose license plate read “I GET TO”.
At first the attendant laughed, he didn’t know what it meant; does the woman have this plate because she gets to be ahead of the driver behind her? Curiosity got to him and he decided to ask what “I GET TO” meant. It turned out that the woman had a daughter who lost her battle with a brain tumor. She was four years old. When she was undergoing treatments which included rounds of chemo and radiation, she would get excited and on the way to her appointments sing , “I get to go see my doctor”, “I get to get radiation”, “I get to see my nurses”, or “I get to play with my toys” and on and on. According to her mom, every time she got to do something, be it a doctor’s appointment, an outing at the park or just stay home and watch TV, she would sing and she rejoiced every single moment. Then one day she was gone and now she didn’t get to…so in her daughter’s memory she changed her license plate that read “I GET TO”. Such a simple message yet so powerful, I immediately hugged Maya because I GET TO…
One year ago yesterday Maya had her first bone marrow transplant. As you are well aware that transplant was rejected as soon as it engrafted. We are so thankful for the donor that gave a chance for Maya to fight.
How quickly a year has gone by. Sam and I consider ourselves extremely fortunate to be where Maya is today. We thank God every day and we count our blessings because WE GET TO wake up with Maya every day. WE GET TO hold her, WE GET TO hug her, WE GET TO kiss her, WE GET TO hear her dance, sing and just be a kid. At this point I am going to make a request, please stop reading this update and please give a hug and a kiss to your loved one around you and if you are alone, pick up the phone and call them and tell them how much you love them…because YOU GET TO.
Unfortunately, for some of our friends, that will never be the case. Our friends Justin and Kristin Akin are living with heartaches every day after losing both of their children (Andrew and Matthew) last year within months of each other. They will not get to make new memories with their boys. Our friends the Jagannathams lost their boy Adi a few months ago. They will NOT GET TO take him to kindergarten someday, he was only 2. Most recently, Kenna Emmons, daughter of our friends Kimber and Brett Emmons earned her Angel wings last week a year after BMT. One of the things that Kimber and Brett will NOT GET TO do is watch Kenna go to her prom someday. She was only 8.
Although their lives will never be the same without their 2 boys, Justin and Kristin have made it their mission to help others. They have set up a foundation in memory of their angels: The Matthew and Andrew Akin Foundation. The goal of the foundation is to provide resources for families of patients undergoing a bone marrow transplant, to increase HLH awareness, and to raise funds for research. We, as parents that are directly affected by HLH/BMT, are so honored to have people like Justin and Kristin Akin who are sacrificing so much to help others. But they can’t do it alone, they need help. If you are contemplating a charity please consider their foundation (www.matthewandandrew.org). Funding for HLH is limited from the federal government since HLH is considered a “rare” disease. It is organizations such as this one that raise funds to provide much of the needed research funds. We strongly recommend that you at least visit the website; it will change your life. Both Justin and Kristin have been truly inspiring to all of us that are dealing with HLH/BMT. Remember you GET TO...
Day +290…”I get to…” 4 yo angel girl ...
When we first came to Cincinnati in December ’09, Maya had many appointments as part of her pre-transplant work up. One of our very first appointments was for a brain MRI which was scheduled at 6:15am. We were running a bit late so we decided to valet park. The parking attendant said to us that he would like to share a story with us if that was OK. At first I was a bit hesitant since we were running late, but I didn’t want to be rude so I said sure. He started by letting me know that he felt compelled to share the story with us for some reason. Just moments before we pulled up to park our car; he had just parked a car for a woman whose license plate read “I GET TO”.
At first the attendant laughed, he didn’t know what it meant; does the woman have this plate because she gets to be ahead of the driver behind her? Curiosity got to him and he decided to ask what “I GET TO” meant. It turned out that the woman had a daughter who lost her battle with a brain tumor. She was four years old. When she was undergoing treatments which included rounds of chemo and radiation, she would get excited and on the way to her appointments sing , “I get to go see my doctor”, “I get to get radiation”, “I get to see my nurses”, or “I get to play with my toys” and on and on. According to her mom, every time she got to do something, be it a doctor’s appointment, an outing at the park or just stay home and watch TV, she would sing and she rejoiced every single moment. Then one day she was gone and now she didn’t get to…so in her daughter’s memory she changed her license plate that read “I GET TO”. Such a simple message yet so powerful, I immediately hugged Maya because I GET TO…
One year ago yesterday Maya had her first bone marrow transplant. As you are well aware that transplant was rejected as soon as it engrafted. We are so thankful for the donor that gave a chance for Maya to fight.
How quickly a year has gone by. Sam and I consider ourselves extremely fortunate to be where Maya is today. We thank God every day and we count our blessings because WE GET TO wake up with Maya every day. WE GET TO hold her, WE GET TO hug her, WE GET TO kiss her, WE GET TO hear her dance, sing and just be a kid. At this point I am going to make a request, please stop reading this update and please give a hug and a kiss to your loved one around you and if you are alone, pick up the phone and call them and tell them how much you love them…because YOU GET TO.
Unfortunately, for some of our friends, that will never be the case. Our friends Justin and Kristin Akin are living with heartaches every day after losing both of their children (Andrew and Matthew) last year within months of each other. They will not get to make new memories with their boys. Our friends the Jagannathams lost their boy Adi a few months ago. They will NOT GET TO take him to kindergarten someday, he was only 2. Most recently, Kenna Emmons, daughter of our friends Kimber and Brett Emmons earned her Angel wings last week a year after BMT. One of the things that Kimber and Brett will NOT GET TO do is watch Kenna go to her prom someday. She was only 8.
Although their lives will never be the same without their 2 boys, Justin and Kristin have made it their mission to help others. They have set up a foundation in memory of their angels: The Matthew and Andrew Akin Foundation. The goal of the foundation is to provide resources for families of patients undergoing a bone marrow transplant, to increase HLH awareness, and to raise funds for research. We, as parents that are directly affected by HLH/BMT, are so honored to have people like Justin and Kristin Akin who are sacrificing so much to help others. But they can’t do it alone, they need help. If you are contemplating a charity please consider their foundation (www.matthewandandrew.org). Funding for HLH is limited from the federal government since HLH is considered a “rare” disease. It is organizations such as this one that raise funds to provide much of the needed research funds. We strongly recommend that you at least visit the website; it will change your life. Both Justin and Kristin have been truly inspiring to all of us that are dealing with HLH/BMT. Remember you GET TO...
I've been registered for a while now, and I believe it was thanks to your encouragement. Thank you.
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