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.
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:
- 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.
- 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/
My name is Jennifer Killewald and I am a mom, a District Manager for the American Red Cross, and a regular blood and platelet donor. Like many blood donors, I began donating blood in high school. I am sure I was more concerned with skipping classes than I was about helping a patient in need, but a donation is a donation! After I graduated high school, I donated a few times here and there and considered myself a regular blood donor. Every time I went to donate blood, I was always surprised to learn how much time had passed since my last donation. I thought I was making donating blood a priority, but I really wasn’t. Until I had a personal experience.
I have five children (four boys and a girl). My oldest son, Mac, was 13 when he was diagnosed with Hodgkin’s Lymphoma (stage 3B), in August 2008. He was a pediatric patient at the University of Michigan. Unfortunately, his cancer was aggressive. The first line of treatment was harsh on his body. He lost his hair, his appetite, his peace of mind, and some days he lost his energy (due his blood counts dipping so low due to the side effects of chemo).
On the days when he was very pale and weak, we would return to U of M for a blood transfusion. On one occasion, he was so weak that he passed out in the car as we were pulling up to Mott Children’s Hospital. His red blood count was so low there just wasn’t enough to deliver an adequate amount of oxygen to his brain. It was scary. We quickly wheeled him into the hospital and began his blood transfusion. Within hours, you could clearly see his color had returned and his energy was restored. In fact, he felt so good after his transfusion, that on the way home he asked if he could go snowboarding with his friends. After all, he was just a kid. He didn’t want cancer to rob him from opportunities of a normal teenage life. Imagine a kid so weak earlier in the day, with energy restored so much so that he felt like snowboarding!! All due to generous blood donors who gave without knowing how much it would change our lives. The blood products gave my teenage son a chance to enjoy numerous moments of fun during a very stressful and abnormal time. Snowboarding, dirt biking, playing hockey with friends and just hanging out with his friends and family.
Unfortunately, Mac’s cancer was very aggressive. About seven months into his treatment plan, it stopped responding to the chemo and subsequent alternate treatments. Eventually, the cancer and chemo treatments took a terrible toll on his body. Due to his immune system being compromised, he contracted the swine flu and was hospitalized. He developed internal bleeding and platelet transfusions became necessary to sustain his life.
Platelets have a very short shelf life and expire after five days. It is very difficult to maintain an adequate supply for patient demand. There were days a platelet transfusion would have helped him, but the doctors had to prioritize another patient’s needs over my son’s. It was hard for me to wrap my head around the idea that we “don’t have enough platelets to transfuse your son today”. Those are tough decisions to make and certainly tough decisions to hear as a parent. This isn’t the fault of the hospitals or blood banks. It is the responsibility we owe to one another as humans to ensure no parent ever again has to be told “there's not enough platelets to transfuse your son, today.” Not enough platelets to transfuse your mother, brother, sister, father, husband, wife, daughter, friend, grandparent, cousin, or neighbor.
Mac was in a very critical stage during this time. His lungs were failing and we knew the platelets and blood alone weren’t enough to save his life. But you know what the blood transfusions did provide? Hope. Time. A few more handholds. A few more I love you's. A few more memories to hold onto before we said our goodbyes. When you contemplate the number of days, weeks, and hours of a 13-year-old boy whose life was cut short by cancer, you quickly realize the moments we were given by blood donors, are invaluable. Please donate blood and/or platelets. Chances are you will never meet your recipient or hear how your blood changed, or perhaps even saved their lives, but know that your donation is the lifeline that patients and families like mine hold onto. Thank you.
Blaire received her heart transplant on August 6th, 2013. She was two years old at the time, about a month shy of her third birthday. She had been diagnosed with restrictive cardiomyopathy and severe heart failure about a month earlier and was discharged home with a PICC line during the time we were waiting for the call we didn't know would come.
Blaire spent her time waiting making gifts for others and playing with her family. She was shy of the PICC line in her right arm and very protective of it. She kept it under her blanket, "Blanky," and never pulled at it or fussed much, except when the dressings needed to be changed. She was then, and is now, the picture of bravery.
Being two years old, she may have known what was going on around her, but as she has gotten older, she has been able to really come to a greater understanding. She is now 5 years old an is inquisitive about her heart. She asks questions and understands. Blaire is very grateful for her life, grateful to God, to her transplant team at U of M, to the donor family. Her life has been restored.
She is developing well. She seems to brighten the lives of everyone she comes into contact with, be it classmates, passers-by in the grocery store, or other kids at the clinic. To Blaire, bravery is a way of life. Most kids her age and older cry and protest at their blood being drawn. But not her. She understands the importance of her care, what is being done and why. Although the medicines she takes don't taste good and cause her stomach pain, she still takes them exactly as she should.
Blaire, and we as a family are eternally grateful for the gift of life, the physicians and transplant team at the U of M for their excellent care and follow through. Blaire is truly a Wolverine for Life. We hope her story will inspire others to choose to donate life and bring awareness to CHD.
- Alyscia Kenewell