Doubling the odds: Gina’s cord blood story

August 15, 2016 at 2:13 pm

gina-healthyIn the summer of 2012, Gina Grein was constantly tired. She thought it was from working two jobs and needing extra rest. In November, Gina noticed a large bruise on her calf, but figured she had just run into something. Her sister had been diagnosed with Chronic Myelogenous Leukemia (CML), and Gina’s focus was on her sister’s health.

Her dentist even noticed that her gums had even changed color, but they felt perhaps a change in toothpaste was to blame. It seemed to go away.

Everything was explainable. I had never been sick in my life.

On New Year’s Eve, Gina went to the grocery store and barely made it home. She recalls sitting down on the couch and waking up six hours later.

Over the next few days, she could hardly eat or get out of bed. It’s the flu, she thought, but a weird flu. After a few days of calling in late or being sent home from work, she asked a friend to take her to the doctor.

Gina’s bloodwork showed a 50% blood loss, but she still thought she had caught a virus.

The doctor said, ‘I don’t think you have the flu. Go to the ER.’ I was like, ‘how can I have a blood loss with the flu?’

She received four blood transfusions over the next four days.

A bone marrow biopsy confirmed the worst: acute myeloid leukemia (AML). Gina was released from the hospital in Puyallup, and sent to Seattle Cancer Care Alliance (SCCA) the next day.

The prognosis wasn’t great: SCCA oncologists gave her 10 months to live with no treatment, and a 39% chance of survival with standard chemo.

But there was another option: adding a trial drug called “the hedgehog” might up her odds of beating AML to 70%. She would be the first patient at UW on this regimen.

gina-hospital

Gina was hospitalized at UW Medical Center a for seven days straight, with around-the-clock IV chemo. She received more than five months of treatment.

Thanks to the chemo and “the hedgehog,” her AML went into remission for a year but returned.

Doctors put her onto another trial drug. She did’t feel sick as she had been before, but her blood counts were down to zero.

A stem cell transplant would be Gina’s only hope of a cure.

She received blood transfusions every two to three days while doctors looked for a bone marrow match.

Siblings have a 25% chance of matching a patient’s human leukocyte antigen (HLA), the marker that helps your immune system determine what belongs in your body and what’s an invader. Out of Gina’s five siblings, only two were eligible to be considered. One was a partial HLA match, and one was a zero HLA match. There were no qualified unrelated donors in the bone marrow database.

Then her UW physicians decided on a novel procedure: a double cord blood transplant. Gina would receive cord blood from two donors to increase her odds of success.

Cord blood units can successfully engraft with an HLA match that is less exact than the matches required for a bone marrow transplant from adult donors, resulting in lower probability of graft versus host disease.

On December 13, 2014 Gina checked into UW Medical Center for five rounds of chemo and one round of head-to-toe radiation to kill off her bone marrow and immune system, and the next day received two units of cord cells from two anonymous infant boys.

The transplant itself took 40 minutes, 20 minutes per unit. It’s no different from getting blood – the recovery part is the hard part.

Gina now shares an immune system with baby boy #2, and likens recovery to stepping back to infancy:

Every childhood shot is gone, so it’s hard for people to understand that I can’t be around sick people. Chicken pox, measles - I don’t have an immunity to those any more.

Twenty months later, she’s in remission with no evidence of disease. Rebuilding her immune system has been harder than she imagined, but her energy is coming back and she’s excited that she’s able to work a few hours a week at her local Home Depot.

Gina has nothing but gratitude. She feels fortunate to live in an area with outstanding medical facilities like UW Medicine and SCCA.

She’s grateful to the local blood donors who sustained her during her treatment, and to the infant boys – now toddlers – who allowed her to live.

I think about those donors every day, and their parents. I wish you could  write a note to the parents, but I just feel grateful that cord blood donation is now starting to have the awareness that it can to save somebody’s life, because without that I wouldn’t be here right now.

Meet BloodworksNW’s summer interns!

August 5, 2016 at 8:32 am

Meet our 2016 summer volunteer interns! These talented, bright students have been a great addition to BloodworksNW, and are enjoying learning about research, healthcare, fundraising, and other aspects of our organization.

katherine-christine

Katherine (L) and Christine (R) are volunteering on our Development team! They’re sisters (triplets, actually) who will be seniors at Bellevue High School in the fall. Along with their brother, they were born prematurely, and Christine needed a blood transfusion. They’re organizers of Music for Life: A Concert Benefiting Bloodworks Northwest, and are both excited to learn more about fundraising, communication and leadership skills, and how medical technology is used to help the community. Their BloodworksNW supervisors say that it’s such a pleasure to be working with such quick and dedicated learners!

Neha

Neha is a Regulatory Affairs student interning with our Materials Management department! She’s inspired by BloodworksNW’s lifesaving work and is excited to be part of this team. Being a Regulatory Affairs student, she also wants to learn about the regulations, clinical research, and quality system management that BloodworksNW uses in maintaining the quality of biologics, blood products, and providing excellent health care services, and is hoping to jump start her career in the healthcare industry.

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Avina is a Business student at the University of Washington! She’s helping Washington Center for Bleeding Disorders with medical records and reporting this summer. She admires Bloodworks’ commitment to serving diverse communities, and is most excited to learn more about how data is stored, analyzed, and used to summarize populations. When she’s not in school or at Bloodworks, she enjoys attending on-campus cultural events, finding new places to eat, and competing against her family in Mario Party.

Use-Holt3

Holt is a Biostatistician Intern at Bloodworks Research Institute in the Johnsen lab! He’s a junior Physics major at Carleton College interested in pursuing a career in medicine. He’s also a volunteer at our Bellevue donor center, and is most excited about learning how to do meta-analyses at the Biostatistics Core this summer. In addition to coding statistical analyses in R, Holt has been in the lab optimizing a polymerase chain reaction (PCR).

Use-Jesse4

Jesse is a future executive helping our CEO’s office archive board records this summer! He’s a straight ‘A’ student and a captain of the water polo team at Bellevue high school. He also volunteers as a donor monitor and helps organize Music for Life: A Concert Benefiting Bloodworks Northwest, an annual student-run concert. His goal for the summer is to learn how decisions are made in upper management and how he can best contribute.

Eleanor-blog

Eleanor is dedicated to improving the lives and well-being in local communities! As a Business Operations Intern at Bloodworks Research Institute​, she’s building the foundation for her future career in public health: she plans on earning a master’s degree in public health so that she can combine research and service to the community. She’s excited be involved in research to promote positive health outcomes for people as well as the process of creating and implementing solutions for issues in the community.

We’ll be sorry to say goodbye when their internships end on August 26!

Learn more about our Summer Volunteer Internship Program.

Sickle Cell Disease and blood transfusions

June 17, 2016 at 9:00 am

sickle-cell-blog

Sickle cell disease (SCD) is a chronic genetic blood disorder inherited from both parents. Having sickle cell trait (inheriting the gene from one parent but not the other) is an advantage against malaria, which is why SCD primarily impacts people of African, Mediterranean, Middle Eastern, and Indian descent.

But the disease itself (which happens when someone inherits genes from both parents) is devastating.

When someone has SCD, their red blood cells are shaped like stiff crescents instead of flexible discs. These pointed cells can snag on blood vessel walls, causing blockages that prevent oxygen from reaching tissues, incredible pain (called a crisis), and damage to a patient’s brain, eyes, internal organs, joints, bones, and skin. These complications can be life-threatening.

Approximately 1 in 500 African Americans (100,000 people in the U.S) have SCD, though as many as 1 in 13 African Americans are carriers of sickle cell trait.

Treatment of SCD often includes chronic blood transfusion therapy to increase the number of healthy red blood cells in the bloodstream, even when a patient is not actively sick. Transfusions can reduce the chance of stroke.

Says Bloodworks Research Institute’s Dr. James Zimring,

The more we study the disease, the more we understand that transfusions are needed earlier and more frequently than we have appreciated.

Anyone who receives regular blood transfusions is at risk of developing antibodies against antigens in other people’s blood, called alloimmunization. The more antibodies someone makes, the harder it becomes to find blood they can still receive.

Transfusion for transfusion, patients with SCD are more likely to develop antibodies than someone without it. Although science is working hard on it, no one understands all of the reasons why.

Most of us know that our blood type is either A, B, O or AB, and Rh positive or negative, which correspond to antigens on the red cells, but there are actually hundreds of other antigens in the blood.

Dr. Meghan Delaney, BloodworksNW’s Medical Director for Transfusion Service at Seattle Children’s, says:

When sickle cell pediatric patients get transfusions from our blood bank. they require specially matched red cells. Most patients receive blood that’s matched for ABO and Rh,

Other than matching blood to patients, there is no way to prevent a reaction besides not transfusing. For some patients, this can to lead delays, substandard care, and even death.

BloodworksNW’s Immunohematology & Red Blood Cell Genomics Reference Laboratory performs the extended blood typing and matching for patients in the community. Sickle cell patients also have blood typing done by genotype, or molecular methods, since there tends to be blood group differences in people of different ethnic backgrounds that can make figuring different blood types more complicated.

Dr. Zimring explains:

Antigens tend to be within an ethnic group. You are more likely to be a match to someone who has a similar ancestry as you do. Therefore, the more people who have a similar ancestry that donate blood, the more likely it is that  compatible blood will be available.

Dr. Zimring hopes to uncover why SCD patients are so difficult to transfuse. He and BloodworksNW’s Dr. Krystalyn Hudson are studying the process by which the immune system makes antibodies to transfused red blood cells.

Understanding why sickle cell patients make antibodies at a greater frequency might help scientists understand why any patient might make an antibody.

This awareness will help researchers formulate new therapeutic approaches, which will help both sickle cell patients and others receiving regular transfusions.

One thing is for certain:

Sickle cell disease would benefit from increased resources for delivery of medical care and research.

More donors of all ethnic backgrounds are needed to help patients in our community. Schedule your next donation


Chad’s story: a dad giving back for his son

June 16, 2016 at 7:00 am
bookingsuite-blog

Chad’s colleagues donate blood at the drive he organized.

When Chad Etsell’s coworkers at Booking.com heard that BloodworksNW was having a shortage of certain blood types, they wanted to go into a donor center to donate blood as a group.

Chad figured, why not set up a blood drive in Booking.com’s Seattle office instead? Within a day and a half, thirty-five people had committed.

Blood donation and donated blood mean a lot to Chad and his family.

Blood donations literally saved my son’s life, so it has a special place for me. I want to donate as much as I can whenever I can, and encourage other people to do the same.

When he was just over one year old, the Etsell’s oldest son, Henry, lost two thirds of his blood into his abdomen after a routine operation turned into an emergency.

After the operation he was very pale and lethargic and not his normal self, even considering having an operation, and had massive bruising and massive swelling.

Tests showed that Henry had hemophilia, an inherited disorder caused by missing clotting protein, called factor. Henry received factor infusions to stop the bleeding and blood transfusions to get his blood level back to normal. He spent four or five days in Seattle Children’s Hospital.

Today, three-year-old Henry receives his daily infusion of factor and immune therapy treatment like a champ.

Chad and Graham helping Henry with his daily factor fusion

Chad and Graham helping Henry with his daily factor fusion.

It doesn’t phase him – he just watches his cartoons or eats breakfast while we’re doing it and it’s totally fine.

Chad is the only one in his family who can donate blood: his wife, Nicolette, and youngest son, Graham, also have hemophilia. He takes pride in being a blood donor.

Chad gives with help from Henry

Chad donates blood with help from Henry.

It’s something you do because it’s important and because it helps people. The stats I found really hit it home: one in four people is going to need at least one transfusion in their life. It’s guaranteed someone very close to you is going to need a blood transfusion.

That’s a pretty huge impact for something that’s relatively small.

Chad’s encouragement paid off: Booking.com registered 44 donors, with 32 first time donors at their drive in May!

Want to help? Schedule your next donation or organize a blood drive.

Every 2 Seconds

June 9, 2016 at 2:09 pm

We’d like to thank Mercer Island High School Senior Meghan Frisch for creating this amazing video highlighting the need for donated blood.

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