Chronic Myelogenous Leukemia: Amanda's Story

First lesson:  Never give up and never lose hope no matter how difficult things get. 

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Amanda Schamper  

It was a joyful time in the life of Amanda Schamper in 2008 when she found that she was pregnant with her third child.  

A 30-year-old nurse and seven weeks along, joy turned to fear when routine blood work at her OB appointment showed something not routine at all:  a very high white count. 

Amanda had chronic myelogenous leukemia (CML).  When, after her son was born, it took an unexpected downturn, in 2009 Amanda was advised to have an allogeneic bone marrow transplant.

It was then that the lessons that continue to inform Amanda's life began to surface.  

They began to crystallize first with an alarming piece of news – that her transplant doctor was moving to another state. 

But Amanda’s disconcerting news was supplanted with good news when Amanda was assigned a new doctor who was wonderful. 

First lesson:  Never give up and never lose hope no matter how difficult things get.

“He was an absolute lifesaver,” she says. “I don't say that lightly.  He was and still is amazing.”

Her new doctor told her that she was young and healthy with a young family to live for. "You're going to survive this, you will make it.”  

“That's exactly what I needed to hear,” says Amanda, “And ever since then I face adversity with light instead of darkness.” 

What happened next was an improbable series of events that produced the donor that Amanda needed to survive.  With no good matches in her family, an unrelated donor was sought and found across the country from Amanda’s Illinois home in the form of a 30-year-old California man through an international bone marrow donor registry called DKMS.  The young donor decided he wanted to help save the life of this mother because of what mattered most in his life — his closeness to his own mother. 

Her new doctor and her unrelated donor enlivened Amanda with a newfound sense of possibility even when life didn’t show a promising hand.

Amanda's second lesson came to her when she had to make this opportunity work.  Recovery meant spending over three months in the hospital missing her children, her husband, and the ordinary stuff of her life — her dog, her friends, her home.  It was in the hospital and in the recovery that continued at home that Amanda discovered a new kind of pleasure, noticing the small things and the life-giving quality of surrounding herself with positive people.

Lesson two:  Find joy in the beauty of ordinary things and the power of kindness and care toward fellow humans. 

While Amanda’s first hospital room's view was a concrete block, she noticed the difference in how she felt when her next room faced a park where she could watch the season change and people flying kites. 

She felt the difference, too, with the power of kind and positive people who uplifted her. 

“It’s around people like that that I feel hope, the gift of life,” she says, “Even in small things and small ways. I noticed the kindness, for instance, of a housekeeper who spent a couple of extra minutes chatting with me.  I want to surround myself with people who are willing to use their gifts to help individual people or society as a whole.” 

Lesson three began to emerge as Amanda saw that recovery was not a straight line.  She found that the progression of the healing process was full of highs and lows.

"If you get sick while you're recovering, if you're extremely tired, if you get a secondary infection, if you have to battle a new hurdle on top of recovering, like graft-versus-host disease, there are so many different things that pop up for each person,” Amanda says.  “Each patient and survivor is different.”

Lesson three:  Don't get caught up in the roller coaster.  Those words became a motto Amanda’s husband created that they both lived by during recovery and still live by today.  

“It's easy to go down that dark, slippery slope if you think things are not going your way, like if a test doesn't come back with good news,” says Amanda, "But if you can say, ‘okay, this test came back not so great, it may not be the best news, but we’ll talk to the health care team and we can handle it’, you’ll do much better and be much happier for it."

Amanda’s life during the transplant years was challenging but led to some high points, too.  She met her donor in person on a stage in New York in front of 1000 people at a fundraising gala honoring Rihanna and her work with leukemia, with the likes of David Bowie, Nate Berkus, Eva Mendez, and Cyndi Lauper, in attendance. 

Amanda’s life these days is a more ordinary roller coaster.  She’s healthy, has three thriving kids, a great marriage, and is focused not on her own healing but the healing of others.  She has been able to make her life purposeful with a dream job, as she calls it, as part of the team at a startup company whose physician founders wanted to alleviate the suffering they saw at the bedside of burn, trauma, and chronic wound patients.  They’ve developed a product from patients’ own skin to regenerate damaged skin to fully functional new skin.

Amanda lives with an unyielding passion to help others by using her unique experiences as a registered nurse and a bone marrow transplant and leukemia survivor to connect with people professionally and personally.

Roller coasters not only descend, they go up, too. 

"I spent months staring out the hospital window and I’m very far from that now,” says Amanda.  “Wherever you are on the roller coaster, you still have to find joy in what in what you're living in.”