Giving back after aplastic anemia

July 24, 2014 at 1:13 pm

patrick-denice

About 4 years ago, Patrick Town’s wife of 18 years, Denice, had been feeling a persistent lack of energy. Her blood counts were low, and her doctors couldn’t figure out why she was so exhausted.

This went on until she noticed excessive bruising for no apparent reason.

She was referred to a hematologist and immediately started receiving blood and platelet transfusions that continued on almost a daily basis for months; her doctor also put her on a powerful steroid and Rituximab, a drug used to treat autoimmune diseases and certain cancers. The transfusions and medications helped make her feel better, but her blood counts kept dropping.

After her third bone marrow biopsy in three months, Denice was finally diagnosed with aplastic anemia, a rare condition that occurs when the body’s bone marrow stops producing enough new blood cells, leaving patients fatigued and with a raised risk of infections and uncontrolled bleeding.

Patrick and Denice looked up the disease online, and first sentence they read said, “blood disorder that’s often fatal.”

We really didn’t know if the sky was gonna fall. Worst time of our lives.

Patrick and Denice contacted Seattle Cancer Care Alliance for a second opinion. Patrick had Denice’s most recent blood report in his pocket at their first appointment with the new physician, who looked at it and said,

Are you trying to scare me?

Denice had virtually no immune system, and her body wasn’t manufacturing any blood components — had she fallen down, she would have bled out internally. The doctor put Denice on “house arrest” until she could perform additional testing.

Denice’s treatment options were limited to ATG therapy or a bone marrow transplant, both risky at her age. Her sister was miraculously a 100% bone marrow match, so doctors scheduled the transplant in less than 60 days.

Denice received massive chemotherapy for four days to destroy whatever of her bone marrow remained, then a bag of her sister’s stem cells.

It was a moving experience to watch life go into her body where it was dead. Everything that could happen from that point forward went the way it was supposed to go.

Patrick describes the actual transplant as anticlimactic, “like getting a unit of blood,” and nothing to be afraid of.

I think it’s the word ‘transplant.’ Really, it’s not that big of a deal! If more people knew how simple it was to be involved in [bone marrow donation], there would be more options for more [patients].

denice-baldDenice lost her hair (“she has a beautiful skull –Sinead O’Connor has nothing on her,” says Patrick), and Patrick had to completely remodel their condo in 2½ weeks to remove irritants in the carpet and paint, but by April or May, they knew she was going to pull through — her doctors called her a “transplant rockstar.”

Patrick made a promise that he would do something for his fellow man in her honor, and The Union Ride & Charity Rally™ was born.

The first ride in 2012 ended at a casino and raised enough money to feed 13,000 hungry children. The second one in 2013 upped the ante with 1500 riders and a custom Seattle Seahawks bike giveaway.

The 3rd annual Union Ride on August 17 is shaping up to be the largest charity motorcycle ride in Washington state and the largest women’s motorcycle ride in history, funneling through downtown Seattle and ending at Key Arena for the Seattle Storm’s final season home game. The City of Seattle is even going to give the ’Ride to the Arena’ a full Police and Firefighters MC escort and close 4th avenue, a historic first.

Non-riders can come out to the event to enjoy a custom bike show; raffles, prizes, awards, vendors and giveaways; discounts to the Storm’s biggest game and Seattle Tattoo Expo; and the chance to win a custom-built Seattle Storm Harley autographed by all Storm players and coaches — all in support of four organizations doing vital work in our community.

Patrick is excited that proceeds from this year’s event will help create jobs and opportunities, feed hungry kids, support youth programs, and literally save lives by funding and encouraging people to join the bone marrow registry through Puget Sound Blood Center’s Bone Marrow Program – Denice was lucky to have her sister as a perfect match, but many patients in need of a bone marrow transplant rely on unrelated donors to save their lives.

My wife is the most gracious, most amazing person I have ever known. It’s important to hear that not every story has a sad ending. We appreciate the gift that we have, and that’s why we both put this thing together.

The Charity Ride entry fee is $25 per rider or $35 per rider with passenger, and the event at Seattle Center is free to public, with suggested donation of whatever you can give. Learn more at unionride.org.

A blood drive in honor of Sam

January 20, 2014 at 8:50 am
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Sam and her mom, Bobbi

Samantha Mellick was a bubbly 19-year-old in her first semester attending Bellevue College on a soccer scholarship, living with friends, dating a cute member of the men’s soccer team, and studying to become a mediator or elementary school teacher. However, two weeks before finals, the health problems she thought were due to anemia turned out to be something more serious.

“I had been feeling really tired and was bruising really easily,” Sam recalls. “I was living on my own and was’t eating enough iron, so that’s what we thought it was. I went home and ate steak and fruit and vegetables, and I felt fine. I went back that Monday and was just sick.”

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Sam at her high school graduation

The diagnosis was acute promyelocytic leukemia (APL), a rare and aggressive blood cancer that causes immature white blood cells to accumulate in bone marrow and leads to a shortage of other blood products.

“The doctors identified the leukemia pretty quickly,” her mom, Bobbi, says, “She was very symptomatic. They were really quick to start the medicine specific to that treatment, and it was that treatment that saved her life.”

Sam doesn’t remember her time on a ventilator and 24-hour dialysis during the first weeks of her treatment, though she does know that she received blood as part of it — 56 units of O positive red blood cells and platelets in the two months since her diagnosis.

“Blood makes me feel so much better!” she says, “I got three bags in one day last week.”

Friends Beth Whitton and Kim Emmons have not met Sam in person, but they both wanted to help.

“Bobbi had posted on Facebook that her daughter was diagnosed with leukemia just before Thanksgiving,” Kim, a high school friend of Bobbi’s, said. “And hearing how much blood Sam was needing, it seems like it was desperate measures. I shared this with Beth; Beth didn’t know Bobbi and Sam, and Beth is the hero in all of this. She took it upon herself to say, ‘we need to do a blood drive.’”

“I love Kim, so I wanted to help someone important to Kim in anyway I could,” said Beth, “and thus the blood drive began.”

Kent Patient Blood Drive

The group sends kisses to Sam

The drive in Sam’s honor registered 46 donors, including 12 first-time donors, and collected enough blood to help 120 patients. Kim’s husband’s restaurant, Mitzels American Kitchen in Kent, donated homemade cookies, brownies, and cupcakes and juice and water.

Despite her intense fear of needles, Beth became one of these 12 first-time donors. ”I just never knew before how important it was. I think it just takes something like Sam’s story to open your eyes and to open your heart. My fear of needles and blood cannot possibly hold a candle to Sam’s and her family’s fears about leukemia, so I just pushed through for Sam.”

There were so many of us that knew one another in the room that we just kept throwing Sam’s name back and forth to one another. ‘We are doing this for Sam’, ‘Sam had FOUR transfusions today,’ ‘See Sam smiling in your head’… etc. It helped.

“That made me feel awesome — there’s people I don’t know donating blood for me,” said Sam, “I saw one of the pictures, and I started crying.”

Bobbi adds,

We think about how much blood she has needed. I say the ATRA [a chemotherapy drug that treats APL] has saved her life, but without the blood we wouldn’t be here.

Sam has another 4 months of intensive treatment in her future and more than 2 years of chemo after that, but the prognosis looks good. “I’m excited to go back to school and hopefully play soccer again. It will be awesome to show everyone how fine I am, how normal I am.”

Beth and Kim are organizing another blood drive on March 14th at the John L Scott offices in Maple Valley, and Sam’s former team, Washington Rush Soccer Club, is hosting a drive in Everett on February 1 that Sam hopes she will be well enough to attend — Sam and other patients in Western Washington would love it if you would participate. 

You can follow Sam’s progress on the Support Sam Facebook page.

Your blood has kept me alive for 25 years

October 7, 2013 at 8:30 am


christy2 By Christy Bemis

Your blood has kept me alive for 25 of the 34 years I’ve been alive.

I have Paroxsysmal Nocturnal Hemoglobinuria. PNH is a rare blood disease that causes red blood cells to break apart because they are missing a protein that protects them from the body’s immune system. My PNH started off as Aplastic Anemia, before becoming PNH.

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Christy singing to American Idol while receiving a transfusion

I was first diagnosed in 1989 when I was 9 years old. For almost two years I received platelets transfusions daily and red cell transfusions weekly while doctors said I had 3 months to live.

Your blood has miraculously kept me alive for the last 25 years. The average person lives 10 years after being diagnosed with PNH. When I was diagnosed no treatment existed for PNH. For 19 years the only thing doctors could offer me were blood transfusions to keep me alive or a bone marrow transplant, which could potentially cure me.

After exhaustive multi-decade searches no family member nor unrelated donor was found. My genetic originality is killing me.

In 2007 a treatment was finally FDA-approved and greatly improved my prognosis and quality of life. I’m so thankful I survived long enough to receive this treatment. I couldn’t have survived so many years without so many blood transfusions, and I wouldn’t have survived another 6 months without this treatment, which costs $500,000 a year.

Treatment or not, the thing that has kept me alive more than any medication or treatment is the blood you’ve so generously donated, and that is priceless.

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skydiving!

When I look at strangers I often wonder if they are my hematologic doppelganger. Then I wonder what they’d think of the adventures and accomplishments their blood has allowed me to undertake. I graduated from the University of Washington with a chemistry degree, I took your blood on a snowshoeing trip New Year’s Eve on Mt Rainier, a hike that led to the most beautiful lake I’ve ever seen, and last month for the 8th time I walked 60 miles in 3 days for breast cancer. I’ve run countless 5ks, several half marathons, and this weekend I’m running my first marathon.

I think that the thousands of blood transfusions I’ve received contain more than just red cells or platelets. I think they also contain your kindness, generosity, and compassion.

You could be a match for Christy! Learn more about donating bone marrow and sign up to join the Be The Match® registry at psbc.org/marrow.

Did Someone in this Room Save My Life?

February 17, 2011 at 12:49 pm

Click to Watch a Video of Monique’s Story.

“I cannot walk into a grocery store or a large room without wondering if I’m alive because someone there gave me their blood.”

Literally in the blink of an eye, her life changed. It happened on a drizzly night as she drove in Olympia in January 2002. In seconds, Monique Dugaw went from an athletic and pretty 17-year-old with a bright future to a highway statistic with a broken body and a face her mother could barely recognize. Dugaw’s car had crossed U.S. 101 and smashed into a tree minutes after she left a friend’s house for her parents’ home nearby. She was tired from a long day of skiing, closing her eyes for just a moment.

Rescue workers thought she was dead. Her pelvis, tailbone, ankle and middle finger had been broken. Her right elbow had been dislocated and shattered, a lung puncture and internal organs damaged. She also suffered head trauma, bleeding in the brain and multiple facial lacerations. “I lost more than half of my blood from the injuries,” she says.

Once at Providence St. Peter Hospital, blood transfusions began and her condition stabilized. “That saved me,” she says. “I wouldn’t be here today if people hadn’t donated to Puget Sound Blood Center, because the Blood Center supplies the hospital.”

Monique enjoys sharing her story, and continues to champion the work of the Blood Center to this day. “I’ve finally gotten my life back together,” she says. “And Puget Sound Blood Center has helped me do it. Not just from the nearly six units of blood I received – but emotionally.

“Being able to share my story has allowed me to continue recovering.”

Schedule your own blood donation at a donor center.

For the Love of Grandma

January 14, 2011 at 9:08 am

Alecia Burgett and her Great-Grandmother, Minnie

By Alecia Burgett

I have always been scared of needles, even when working in the field of veterinary medicine. However, I found myself always wanting to donate blood, so I was in a catch 22. My story is a simple story, but one that is very personal to me.

It was on a Monday morning that my mother came into my room to update me that my great-grandmother had gone to the hospital last night because of a fall. This wasn’t the first time she had fallen, but it was more serious then before. We went to the hospital, and seeing my grandmother lying there so helpless was terribly difficult. She was hooked up to fluids and couldn’t even recognize who I was. My mother and I gave her a hug and after a few words went on our way.

I had talked to my mother earlier about wanting to donate blood, but had told her no one would donate with me. She asked why I didn’t just visit the Blood Center myself and see what they would say. I decided then that I didn’t want to use other people’s inaction as an excuse anymore. While shopping near the Federal Way Donation Center, I decided to stop in just to ask a few questions about eligibility. The woman at the desk was very helpful and asked if I wanted to donate right then. I got clammy and fumbled my words but decided if not now, then when?

My grandmother was in the hospital along with many other mothers, fathers, sons, and daughters, and who knew when they would need the blood I could donate? I filled the paperwork, went through my mini physical and sat in the chair. My palms were cold and I was shaking, but I knew that what I was doing was life-changing to someone, a stranger. The poke was so easy and before I knew it the process was over. The staff at the center was so caring and helpful in calming my nerves; they talked me through the whole donation, from start to finish. I will never know who gets my donations but I know they will appreciate every donation. Rest assured I will be donating every chance I get, and I will be thinking of my grandmother every time I donate.

Schedule your own blood donation at a donor center.

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