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Matt Carpinelli’s Touching Story: How the nbmtLINK Helped his Father

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Matt and family

Matt Carpinelli and family

The night of December 17, 2001, changed my life forever. That was the night that my 54 year-old father, Dave Carpinelli, was diagnosed with AML. I still can’t bring myself to write out the scary thing that stands for, so I use the acronym. My strong daddy, the guy I never saw scared, was white as a sheet. He knew what this meant even though my mom and I had no idea. He was the kind of guy that wanted to know what he was up against, so he knew the bad news of his diagnosis before it was confirmed.

We learned that there is a 5% five-year survival rate for men over 50 diagnosed with AML. It was a bad diagnosis, with only one chance at living for more than a few months. That one chance was a bone marrow transplant. We all thought that leukemia was something that kids got, not adults, and BMT’s were something for younger people.

There were a lot of misconceptions and uncertainty those first few months after diagnosis. What would the transplant be like? Would it kill him? What if he didn’t have the BMT? If it worked, what would life be like? To our surprise, these weren’t questions that our oncologists and doctors could really answer.

Matt's father

Dave Carpinelli

That’s when my dad found the nbmtLINK. The LINK gave him comfort and helped dissipate his fear of the unknown. My dad made friends from the LINK, people that told him the truth about what to expect with his transplant. More than anything, Dave Carpinelli was a straight shooter, and someone that really didn’t like B.S.

The people and resources of the LINK gave it to him straight. They weren’t fun things to look forward to but at least he knew what to expect—less fear of the unknown.

I am forever grateful for the relief that the nbmtLink gave my father in the final months of his all too short life. He was optimistic about what his life could be if he survived. He learned from the LINK that his life would be different but still good after the transplant.
Thank you to everyone who gave my sweet father that comfort while preparing for his final journey.

Amanda Schamper: Giving Back and Going Strong

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Amanda Schamper

I was 30 years old and seven weeks pregnant with my third child when I was first diagnosed with leukemia. I had no symptoms other than being slightly tired, but who isn’t a little tired with a five and three year old running around? The doctor had discovered my leukemia from the initial lab work that was done at my first O.B. doctor’s appointment. It was a miracle that it was discovered in the early stage. Because of the kind of leukemia I had, there is an oral medication that can be taken which has a 98% remission rate. Unfortunately, I couldn’t start this treatment because of the high risk of birth defects.

Instead, I gave myself daily injectable chemotherapy for four months until I was told that it had stopped working. I was getting anemic and the leukemia was spiraling out of control. My doctors had done research into the preferred medication and felt it was safe enough for me to start taking it, now that I was in my second trimester. As you can imagine, this was a difficult decision to start this treatment as I didn’t even like taking Tylenol while pregnant. My husband and I felt I wasn’t helping my son by not taking care of myself and the leukemia. He was born full-term and perfectly healthy. I like to call him my little miracle because without him, I wouldn’t have known I was very sick until it was possibly too late. He is in the first grade now and quite the friendly personality.

We had thought everything was going to be ok but four weeks after he was born the leukemia had changed forms and turned into a blast crisis. I was then told I needed a bone marrow transplant to save my life. I was devastated. What was supposed to be the happiest time of my life turned into my worst nightmare.

The doctors said that if and when I had the bone marrow transplant, I’d have to spend 100 days away from my family, friends, pets and home while I recovered, since I lived so far from the hospital. But first they needed to find me a bone marrow donor match. They tested my sister, with a simple cheek swab, to see if she was a match for me and we were disappointed to learn that she was not. I was told that only 30% of patients who need a bone marrow transplant will find a match within their family and the other 70%, like myself, must turn to the National Bone Marrow Registry to try to find a life-saving match.
I was one of the lucky ones. They found a match for me within two months. Once they got my leukemia under control, I successfully had my bone marrow transplant when my son was just six months old.

In October of 2015, I celebrated my six-year transplant anniversary, which is a huge milestone in the cancer survivorship world. I also had the incredible opportunity to meet my bone marrow donor during Delete Blood Cancer’s annual Gala in NY, four years ago. He’s a man from California, just a year younger than I am, and his reason for donating was simple. He is very close to his mother and when he learned that I was also mother of three, he knew that he had to help because he couldn’t imagine growing up without having his own mother.
It was an amazing experience to finally thank the man who saved my life. In all honesty, I wouldn’t be here today if it wasn’t for his willingness to donate. He is truly my hero and I’ll be forever grateful for not only what he has done for me, but for my entire family as well.
I now work for Delete Blood Cancer DKMS, the non-profit organization that helped save my life. I help to raise awareness and increase the national/global bone marrow registry so that other patients can have the same opportunity as I did, to have a second chance at life.

Leukemia Survivor and her Son

Our new website is up and running and I have a question for you.

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It’s time to get our blog going. We are rounding up posts and inviting patients, caregivers and health care providers to share, share and share some more. We learn from each other and therefore we can help each other. Will you consider joining us? If you would like to be a guest blogger, please contact Peggy Burkhard at (248) 770-5172 cell or (248) 358-1886, or email, peggyburkhard@nbmtlink.org.

We surely look forward to hearing from you soon!

I ask you this—what do you know now that you would love to share, as a patient, caregiver or health care professional, with someone newly diagnosed and about to start the bone marrow transplant journey? I look forward to hearing from you.  – Peggy Burkhard, Executive Director, nbmtLINK