Stories

Connor's Story

My name is Connor Burke and I am a Junior studying biochemistry at the University of Michigan. After my Freshman year, I was diagnosed with Acute Lymphoblastic Leukemia. I was 19 at the time which landed me in the "Adolescent/Young Adult" category, but my doctors put me on an aggressive treatment plan inspired by the conventional pediatric treatment protocol. While "aggressive" seems an appropriate label from a clinical perspective, one that is more descriptive from a patient's perspective would be "debilitating." For seven months, the best thing I could do for myself was to avoid health complications like getting sick, breaking bones, or excessively bleeding, because anything of this nature could force a change to the treatment plan and reduce the chance of a positive health outcome.

Implicit in this objective to avoid complications is the necessity to maintain acceptable (albeit lower than normal) blood counts. Red blood cell counts below a certain threshold increases the chance of fainting and getting hurt, and a lack of platelets makes it difficult to form a clot if I was to ever get even a small cut, allowing blood to exit and germs to enter. I was on a variety of medications to deal with symptoms and side-effects of chemotherapy, but none of them worked quite as remarkably as blood transfusions. So far, I have received six units of packed red blood cells, four units of platelets, and two units of cryoprecipitate. Fatigue is almost constant for many leukemia patients, but the transfusions of packed red blood cells gave a temporary reprieve from the fatigue when it was at its worst. The platelets and cryoprecipitate made my numbers look better on paper, and also put my mind at ease that I would not get a spontaneous bloody nose. All of the transfusions have been instrumental in allowing my treatment to progress the way it is supposed to. 

Treatment is going well, and following the intense seven months of treatment, I began the much lighter maintenance phase of treatment. If all continues to go well, I will be declared "cancer-free" in October of 2022, but even after that, I will be ineligible to donate blood due to my history of having a blood cancer. So, to help anyone who finds themselves in a position similar to mine now or any time in the future, I would encourage anyone who is able to donate blood. 

-Connor Burke, Blood Drives United Executive Team

Nick's Story

When I was 13-years-old, I was diagnosed with kidney disease.  I  received my first kidney transplant about three or four months later from my mom. I was on dialysis for a while.  My mom gave me a normal kid's life from there. My kidney lasted almost 20 years until it failed again.  

I was once again on many different kinds of dialysis for three years.  Then on August 22, 2013 I was on the way home from helping my mom babysit my nephew when I got a call from the hospital saying there may be a kidney for me. They had to wait because there was some trauma with the organ.  Two days later, they told me to go to the hospital; the kidney was good enough to do a transplant.

Once I got there, I had to decide whether or not to do the transplant  I weighed my decision and I decided to go through with the transplant. Now over seven years since my transplant, I have never felt better. I'm 42 years old but I have had so much energy, I feel like I am in my early 20s.   

One of the things I cherish about my second transplant is the many friends that I have made through organizations and groups like Gift of Life Michigan and Wayne State Gift of Life. I will also cherish my bachelor's degree in Accounting from Wayne State University that I received in 2018. When I graduated, I looked in the sky above Ford Field said thank you to my donor. I'm also grateful that in 2019, I finally got connected with my donor family.

Every year I sent letters to my donor family, like many other transplant recipients. I participated in the annual Gift of Life Campus Challenge with Wayne State Gift of Life. In 2019, for the fourth year in a row, we got to go on Fox 2 News for an interview with Amy Andrews. I was on with a few other young ladies who had their own beautiful donor stories.

About a month later, I decided to check my Wayne State email. Since I had already graduated, I hadn't checked in a few days. I got another email from Amy Andrews; she forwarded an email from my donor family. It said that they wanted to contact me through email to tell me more about my donor. They did not want to meet me just yet and that was perfectly fine with me. My donor family and I would email each other a few times a year; I would tell them what I was doing and they would tell me a little bit about my donor.

My donor was a loving person who loved her family. She was a soccer player. According to my donor family, she would train like a champion at whatever she does. I have continued this legacy because I am going to the Transplant Games in New Jersey next year; every time I go out and train I use #trainlikeachampion. She volunteered at an animal shelter. She also studied to be a nurse. She wanted to help people and, you know what, she succeeded.  I always think of her and try to do the best I can do.

-Nick Giannamore

Travis' Story

My son Travis, passed away on April 2, 2016 due to a car accident during one of Michigan's weird weather storms of snow, sleet, rain, and wind. My son became a blood donor in his Junior year of High School. He became a tissue/organ donor the day he received his driver's license at the age of 16.

Travis saved lives through his countless blood donations from the age of 17-24. Travis saved lives through his tissue/organ donations at the age of 24. Gift of Life Michigan and Eversight sent our family letters of gratitude for the unselfish decision of giving from Travis. Twenty-eight people from the age range of 14 to 72 have received Travis' tissue/organ donations.

Our family uses the statement "Travis lives through others" anytime people ask how long Travis has been gone. Travis is a hero. Thank you for bringing awareness to the need for blood, tissue/organ, and marrow donations.

-Raquel Martinez-Ybarra

Alex's Story

My name is Alex Ramer and I am an engineering student at the University of Michigan. My brother Brent and sister Lauren carry a rare genetic mutation that predisposes them to all forms of cancer (Li Fraumeni Syndrome). They have battled a combined eight different cancers.​

In 2011, when I was in the eight grade, my younger brother Brent was diagnosed with osteosarcoma, a type of bone cancer, in his hip and my sister Lauren was found to have a golf ball sized brain tumor. Consequently, my parents were required to be at the hospital, including repeated and extended stays in New York City, to care for Brent. Surgeons removed half of his pelvis which risked amputation of his entire right leg. 

In February of 2015, my brother developed Acute Myelogenous Leukemia, a devastating side effect of prior chemotherapy. We celebrated the fact that I was a perfect sibling match and able to donate my bone marrow to him.

In July of that year, I donated bone marrow to him. For two months, my immune system battled to beat off his cancer and replace his old immune system. However, my cells didn’t take, and he relapsed with AML. In November of 2015, we tried again. This time, however, I donated peripheral blood stem cells to him. Fortunately, my cells took over and my immune system replaced his! Our family was overjoyed.

A year later, he developed necrotizing fasciitis (a flesh-eating bacteria.) I had the unique opportunity to donate my skin, because Brent had my transplanted immune system which recognized and accepted my skin. This had never been done before.

While we try to focus on the positive, some days are simply horrible. Both my brother and sister were diagnosed with cancer again in the summer of 2017. Brent had relapsed with AML and Lauren had osteosarcoma. Brent was forced to wait until his October birthday to enter an adult clinical trial using a CAR T therapy. It took weeks for the cells to be processed and Brent became sicker during this time. On December 30th, 2017, cancer had a devastating impact on my family when it took Brent’s life. 

While I am still heartbroken by his passing, I am grateful for the chance to spend those extra years with him because of the bone marrow transplants. The treatment gave him a fighting chance that he wouldn’t otherwise have.

Please join registry at Be the Match to help those that aren’t as fortunate to have a family member match. It’s unlikely that you will be asked to donate, but those that are will have the chance to save that person’s life.

At the University of Michigan, I am the president of Be the Match for the third year. Our group registers people to be on the bone marrow registry, which is a life-saving treatment for patients with blood cancers and disorders like my brother. Our organization would like to make the national marrow registry much more diverse. The ethnicity of the patient with blood cancer is a critical factor in whether they will find a donor. Patients of Caucasian descent have roughly a 77% chance of finding a match on the registry. However, African Americans only have about a 23% chance of finding a match. You can help improve this disparity by registering at join.bethematch.org/CURE29

 -Alex Ramer

 

Natalia's Story

Natalia, an 8-year-old girl from Ann Arbor, was diagnosed with acute myeloid leukemia in August 2019. She has been hospitalized for most of the last 2½ months at University of Michigan’s Mott Children’s Hospital, where she is undergoing chemotherapy. She has about 3-4 more months to go. Her family and doctors hope that the chemo will be enough to cure her. However, if it isn’t, she will need a bone marrow transplant. As of right now, there are NO full matches in the bone marrow registries worldwide. Natalia’s mixed race background – Latina, Chinese, and white – makes it especially hard to find a match.

Did you know that although 77% of white individuals can find a match on the bone marrow registry, only 41% of Asians, 46% of Latinos, and 23% of African-Americans can? For someone of mixed race like Natalia, the odds of finding a match are even smaller and so your help is needed. 

 

How you can help:

  1. Please sign up for the bone marrow registry at join.bethematch.org/CURE29 and share this request with your friends, especially those who are of mixed race. Registering involves an easy cheek swab that is sent by mail. Newer donation procedures involve only very minimal pain – well worth it if it can save another person’s life. If not a match for Natalia, your donation might help someone else.
  2. Stem cell transplant using umbilical cord blood might be an option for Natalia if no bone marrow donor matches can be found.  If you know of any expecting parents in any part of the US, especially those expecting a multiracial baby of similar ethnicity to Natalia, please encourage them to donate their newborn’s cord blood to a public cord blood bank.  Here is a link to a list of participating hospitals: bethematch.org/support-the-cause/donate-cord-blood/how-to-donate-cord-blood/participating-hospitals/

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