Jessica: A Survivor Twice, Thanks to Blood & Bone Marrow Donation (Part 2)

May 20, 2010 at 5:12 pm

In Tuesday’s post, Jessica described how a bone marrow transplant in 1998 successfully treated her Acute Myeloid Leukemia. However, in 2001, she developed life-threatening Aplastic Anemia as a result of her cancer treatments. Only a second bone marrow transplant had a chance of saving her life.

If you would like to help patients such as Jessica find lifesaving bone marrow matches, please learn about participating in Puget Sound Blood Center’s Swim for Life Across Lake Washington.

My brother came to my rescue yet again. In October of 2002 I received my second bone marrow transplant, this time at the City of Hope in Duarte, California. This time, Daniel donated blood stems cells by PBSC donation (peripheral blood stem cell), instead of from his bone. Donors can use this method about 70 percent of the time.

My second bone marrow transplant was much harder on me–I was in the hospital for several months as opposed to three weeks, and my immune system was so compromised that my mom, who stayed with me every night, had to sleep in a mask and gown.

Thank you too, Jessica. Thank you for your bravery and for your dedication to educating others.

I was discharged from the hospital when I was no longer dependent on my IV for my medications and fluids. I have been disease-free now for eight years.

I had difficulties after each transplant, including Graft vs. Host Disease, the horrible side effects of the medications used to treat it, and the tentative acceptance of my peers after I had been changed so drastically.

It is a frightening thought, to realize that had my brother not been a match for me, had a donor not been found soon, I would have died from Aplastic Anemia within a few months.

I am so fortunate that my brother was a good candidate to donate his bone marrow to me. Some people aren’t as lucky as I have been–70 percent of people requiring a life-saving bone marrow transplant will not find one from a relative, but from someone unrelated. The demand for blood donations and bone marrow donors is frighteningly high. After my experience, every person in my family as well as several close friends who were eligible have signed up with the National Marrow Donor Registry. Registering is really simple: you must be between the ages of 18 and 60, you just have to fill out a health questionnaire and do a simple cheek swab, and you can sign up at any mobile blood drive or donor center.

As strange as it may sound, it was my experience during my first transplant that ignited my love of Seattle and prompted my move here in February of 2008. I love how eco-minded the people in Seattle are, how conscientious everyone is, and how much effort is put into preserving the city and its population. And I am so grateful to the doctors, nurses, volunteers, and donors who commit themselves to saving the lives of patients like myself.

I can’t donate my blood. I can’t donate my bone marrow. All I can do is share my story, and thank the brave men and women who help to save those patients who do not have a big brother who loves them.

Thank you, and Baruch Hashem.”

Thank you too, Jessica. Thank you for your bravery and for your dedication to educating others.

Jessica: A Survivor Twice, Thanks to Blood & Bone Marrow Donation (Part 1)

May 18, 2010 at 9:41 am

Patients are most likely to find a compatible donor within their own ethnic group. A diverse Registry of potential donors is needed.

Jessica survived Acute Myeloid Leukemia and Aplastic Anemia thanks to the selflessness of many, many donors. Jessica’s story was originally posted on Sep. 23, 2009. It’s time to share it once again with the Blood Center’s many new Facebook and Twitter followers. Thanks again to Jessica for her generosity in sharing her story through this guest blog post.

Cancer treatment isn’t easy. It isn’t fun, or simple, or a walk in the park. My acceptance of the situation, my adaptability (my naiveté), my faith that when my parents told me “everything would be OK” it would be—that’s what got me through the years of treatment. Bravery had nothing to do with it.

My brother, Daniel, was my bone marrow donor. I’ve heard stories of family members who were too scared, too preoccupied with their own lives and their own fears to donate their bone marrow to a dying relative. I don’t believe the thought ever occurred to my brother. When Daniel woke up from anesthesia the day he donated his marrow to me, the first thing he said was, ‘They tell you not to feel responsible, but how can I not?’ and my big, strong, bully of a brother cried.

He had been referring to the possibility of my death. To me, that is bravery.

I was diagnosed with AML- Acute Myeloid Leukemia- in 1998 at age 11. I was an active kid; I was the catcher on a softball team, played handball with my friends at recess, and never fretted over cuts or bruises or splinters. On Memorial Day weekend in 1998 I noticed a small bump, about the size of a pea, in my right cheek. I couldn’t see it, but If I pressed my tongue against the inside of my cheek and a finger on the outside, I could feel it. My mom had never been the kind to “wait and see,” so I had an appointment with the pediatrician the following day.

I was misdiagnosed that day with a blocked salivary duct, given an antibiotic and told to suck on sour candies. My friends were jealous when, the next day at school, I had a Warhead consistently in my mouth.

I was told that when my mom received the call, she collapsed onto her knees, unable to speak.

I had spent the night at a friend’s house that weekend, and the next morning I was swept away without an explanation, told only that I had to see the doctor again.

I received my chemotherapy treatment at UCLA Medical Center in Los Angeles, California. To be honest, a good deal of that time is a blur to me. I remember beating Super Mario Brothers at least five times, staying up nights, trembling uncontrollably, with my mom while I was on Amphotericin (which doctors nickname “Awful Terrible”), and fine-tuning my love for classic Hollywood films and Mel Brooks. When I wasn’t in the hospital I was traveling there three days a week for blood transfusions. Every time, I would receive at least several bags of red blood and platelets each. The process usually took all day, and if I still had not been given a significant enough boost I would be admitted overnight.

On one such occasion, my platelet level had dropped to a dangerously low level. My skin was unable to keep itself knit together—my gums split open of their own accord, and I could do nothing but lay in a hospital bed with the taste of copper running down my throat, hoping the next transfusion would be enough to heal the wounds my body had given itself.

Hospitals often keep track of what donors have an especially good effect on a patient, and a man who had recently moved to Northern California who had boosted my levels before was called. He flew down to Los Angeles to donate his blood to me again. I’ve never had the chance to thank him.

I’m not sure what led my parents to decide on the Fred Hutch Cancer Research Center for my bone marrow transplant, but their decision put me on a path that I had never previously considered.

My mom, grandma, godmother, brother and I moved into three apartments in Capitol Hill in August. I received the last stage of my treatment, and enjoyed the city of Seattle while I was still able and allowed. My favorite thing to do was go to the arcade on the wharf. There was, and still is, a photo booth that takes your picture within the frame of your choosing. I still have a picture of myself, bald and fifty pounds overweight from steroids, within the frame of a newspaper with the title, “Aliens Have Landed!”

I had my bone marrow transplant in September of 1998. The day I was admitted I was instructed to walk two miles everyday, which was approximately nineteen laps around the transplant ward. The first day I lapped every other patient at least three times. A week later, it was all I could do to put one foot in front of the other. In one of the rooms, when the door was open, you could see Mount Rainier through the window. It became my goal each day, to finish each lap in order to catch a glimpse of the beautiful mountain.

I was in the hospital for approximately three weeks. The day I was discharged I walked home to our apartment in Capitol Hill and then made dinner for my mom and I.
We moved back home to California in January of 1999, and I resumed the semi-normal life a cancer survivor is destined to have.

In 2001, during my freshman year of high school, I began to have dizzy spells. They were severe enough to put me flat on my back for fear of passing out, waiting for the blood to return to my white face and lips. I was diagnosed with Aplastic Anemia, a disease that is often caused by the treatments used for Leukemia.

My doctors first tried to control the disease with medication, and when that didn’t work, plasmapheresis—a process in which blood is removed from the patient, the plasma is separated from the rest of the blood and then discarded, and the remaining blood is then returned to the patient. When plasmapheresis did not seem to help any, my doctors turned to my last resort—a second bone marrow transplant.

The conclusion to Jessica’s story will be in the next post. You too can learn about joining the Bone Marrow Registry.

Hitting the Road to Donate (Part Four): The Unsung Roadies of Puget Sound Blood Center

April 26, 2010 at 9:53 am

Guest Blog Post by Steven Pogge

Thanks to Steven Pogge for chronicling his mission to donate at all 11 donor centers in Western Washington, and for acknowledging staff and volunteers at each center. In this post, he honors two Mobile Assistants: Tom Plantenberg and Dan Deyour.

There is a small group of people with the Blood Center that have been given the title of Mobile Assistant or M.A. for short. These are the men and women who are in charge of driving to, setting up and tearing down the mobile drive. I like to think of them as the Unsung Roadies. They are a combination of many things, keeper of the supplies, interior designers of the draw area, long haul truck drivers, janitorial engineers, and phlebotomist helpers and keepers of the juice.

Like good roadies, they are usually the first to arrive and last to leave the draw. From ice and snow in December, cold February mornings, April downpours and hot August afternoons, they trek from the van to draw without a whimper. The slog can sometime be to the top of multistory buildings, across expansive grounds of state office buildings, under the steps of a high school auditorium or through an underground parking maze that would confuse a mole. Even when the location is easy to find they sometimes have to obtain security clearance, pass through a metal detector and survive the scrutiny of uniformed guards, just to enter the front door.

A good M.A. has a Global Positioning System along with an avalanche beacon built into their brain. Not only do they need to find these remote locations but they then have to negotiate a huge moving van into spaces a VW bug would have trouble fitting into.

Getting to the location is only half the fun … Imagine having to move a one-bedroom apartment to a new location each morning and then packing it up again at the end of the day. That will give you an idea of the amount work involved. It is a physical workout where one needs the strength of a NFL linebacker, the quickness of an NBA point guard, and the toughness of a NHL goalie.

In my quest to donate and volunteer around Puget Sound, I have run across two M.A.s that I think are the best Roadies around. They are the Men of Mobile 7, Tom Plantenberg and Dan Deyour. Whenever I arrive at one of their drives, I am always greeted with warm welcome and usually a good-natured jab about my showing up a few minutes late. Part of the joy of volunteering with these guys has been being able to joke and kid each other in good fun. Tom always has a pot of coffee that would make a Norwegian cringe. I have the honor of being one of the few to have actually drunk a cup of Tom’s coffee after it has set for a few hours. I was fortunate that the brew was still in liquid form. Dan on the other hand doesn’t have a pot of coffee waiting in the mornings but instead he is brimming with a recent story that would be unbelievable if it happened to anyone other then Dan. In most of these stories, Dan is on the receiving end of some catastrophic event that would have others running for cover. Dan keeps a sense of humor through it all and you can hear his deep explosive laugh across the room every so often. His laugh is sort of a cross between a Santa’s HOHOHO and the breaching of an Orca whale. It always brings a smile to my face.

One aspect of this job that Tom and Dan are sometimes required to perform is the long road trip. Like the early explorers of the high seas, they have been known to venture to the very end of Puget Sound Blood Center territory. It can be all the way to the northern bounds around Port Angeles, where loggers are known to have veins the size of a #2 pencils, to as far down as the Vancouver area, within sight of the Columbia River. No matter when the call comes, Dan and Tom are always there, setting up the draws to supply western Washington with new blood every day. Thank you guys for the great work you do. You are the Lewis and Clark of South Puget sound, the Master Movers, the unsung heroes of the Blood Center.

Celebrating People in Action

April 24, 2010 at 2:36 pm

In honor of National Volunteer Week, Puget Sound Blood Center thanks volunteers such as you for your time, talent and contributions to our mission of saving lives.

In 2009, more than 2,100 volunteers registered donors, monitored donors, couriered blood to and from hospitals, called and scheduled donors’ appointments, helped donors join the Be The Match Marrow Registry and completed numerous administrative tasks for a total of 105,000 hours of volunteer service! What an extraordinary act of kindness and an amazing level of commitment you have shown to our community.

You, as a Volunteer of the Blood Center, are truly valued and appreciated and are an essential asset to the organization. You play a key role in the work that we do. “Thank You” is certainly not enough to express our gratitude for all the time, energy and dedication you have given to the Blood Center, but since it is all we have, we simply say, “THANK YOU!”

If you wish to become a volunteer, learn the many ways you can help.

A Donor Helped a Newborn Breathe

April 12, 2010 at 12:52 pm

Thanks to Jason for sharing this story of how a single donation to Puget Sound Blood Center helped his son take his first real breath.

Take a deep breath. Now hold it for as long as you can. Hold it until you can feel the burning pain in your lungs, in your hands and in your face. Now exhale. Breathe hard to cleanse your body of carbon dioxide. Feel the burning sensation ebb away.

Now imagine if it didn’t go away. Imagine panting and gasping as hard as you could, with no effect. Now imagine if these were your first experiences of life, in the moments after being born. Think how terrifying that would be.

That is what happened to my son. There were complications during delivery. He broke some blood vessels under his scalp–a lot of them, actually–so by the time he was born he had lost about a third of his blood supply. His umbilical cord was also wrapped around his neck, so in effect, he couldn’t breathe. He couldn’t circulate blood to his placenta to get rid of the carbon dioxide.

When that happens, it’s called acidosis, and he had it bad. He had it so bad that by the time he was born, the blood left within his veins and arteries was ruined. The acid buildup had damaged his red blood cells to where they weren’t any good for circulating oxygen and expelling CO2 anymore.

He was gasping for air in a room full of it and he was getting nothing.

The doctors ran some tests, diagnosed the situation, and explained to me, “His blood is ruined, and if we don’t treat this, he could suffer serious brain damage.” They explained the treatment, and I signed the consent form, my hand shaking. I watched as a nurse brought in a bag of O-negative while the surgeon threaded some tubes into the stump of my son’s umbilical cord.

Before my child even had a name, I watched as the doctor performed a “partial replacement transfusion” on him by pulling my son’s old blood out through his umbilical vein while pumping new, good blood in through an umbilical artery. I watched as his color went from bed-sheet-white to healthy pink. I watched as his Apgar scores rose from two, to five and all the way up to ten.

I watched this miracle take place before my eyes. It was possible because there was a pint of O-neg handy and the doctors knew what to do with it.

Today, my son is five years old. He’ll be starting kindergarten in the fall. He’s teaching himself to read. He folds origami better than most adults. He draws amazing pictures, climbs playground equipment and drives his parents just as crazy as does any normal kid.

I can’t say the transfusion saved my son’s life. Chances are he would have lived without it. But I can say that transfusion meant the difference between a normal life and a life lived under the millstone of serious brain damage. What I know is that today my son is healthy and happy, with the full potential of his life ahead of him. Thanks to smart and fast-acting doctors–and an anonymous blood donor who made their work possible–the cruel mischances of labor and delivery did not rob my son of the chance to really live.

For that, I am forever grateful.

Give a pint. You may save a life, or you may save someone’s quality of life. And isn’t that what really matters?

Schedule your next donation at a Donor Center.

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