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A JOURNEY OF HOPE – Part II

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Written in memory of our brave daughter, Katie Janae Cramer, who went to Heaven January 6, 2011.
 

TO THE HOUSE OF THE KING

Continued from A Journey of Hope- Part 1

It was January 2007, and our family would spend the next three years, three months climbing out of the valley of childhood cancer. We emerged – battle-fatigued and scarred – but we had emerged! And no one enjoyed being out of that valley more than our daughter.

Katie seemed to have a renewed vigor for life. The battle hadn’t dampened her spirit – it energized it! She was ready to put her ordeal behind her and get on with life. She enjoyed her friends, being involved at church, and continued to excel in school.

In February of 2011, our now 16-year old daughter decided to enter the first Miss Teen Asia Sacramento Pageant. It was a bit unusual for her to intentionally seek out this kind of attention; her unassuming and soft-spoken nature definitely did not fit the typical pageant mold.

Nevertheless, we were excited for her to step into the limelight, hoping it would increase her involvement with the Asian community and improve her leadership skills. Katie had a story of triumph to tell and was a natural beauty.

Katie won the title of Second Princess, as well as a special award for Academic Excellence. The beautiful butterfly we had foreseen fifteen years ago in the gray city of Liuzhou was now in her full glory! In a little over a week, our world will be turned upside-down once again.

Relapse. The most dreaded word in childhood cancer. Telling our daughter the cancer was back was more than painful. Katie had only been twelve years old when first diagnosed; she had little knowledge about the world of cancer. Now sixteen, she knew what to expect and understood the consequences were more dire.

Childhood cancer parent, Steve McNitt, Cameron Park, put it this way when he learned their son’s cancer had returned, “On June 1st, 2009, Caleb celebrated three years being CANCER FREE! We threw the biggest celebration we could imagine and afford. We thought we were finally done with cancer, and could be a "normal" family again. Our sails were full; our future was bright; our pain was behind us!”

He recalls the event with vivid details. “Twelve days after our big celebration – 9:30pm – Caleb was in already in bed. I was getting ready for bed when the phone rang. It was a pediatric oncologist from Kaiser telling me Caleb’s leukemia had returned. I told her she was wrong and questioned her credentials… then it hit me. Caleb’s cancer was back! I was shocked. I was scared. I was angry! “

Elaborating, McNitt put it this way, “Every molecule of excitement from his celebration was gone, replaced by three times the amount of horror, despair, hopelessness and heaviness – a heaviness that could crush a soul! I had no strength to fight it again. We had only tears… and prayers… and an overwhelmingly heavy depression.”

Like Caleb, Katie’s only hope of beating cancer this time would be a bone marrow transplant. She would be brought back into remission as the search began for a match for her. We had faith a perfect match would be found. It couldn’t be that difficult to find a match; she had a good number of potential matches, didn’t she?

The statistics were not in Katie’s favor. “The odds of siblings having identical tissue types are 1 in 4. The odds of matching an unrelated donor are between 1 in 100 and 1 in a million. Currently, only 25% of the National Registry represents racial minority communities; therefore, the current odds for a minority patient to find a matching unrelated donor may be closer to 1 in a million.” (1)

“Just be patient,” we told ourselves. But timing was crucial; the transplant would need to take place soon after Katie was back in remission. But patience was difficult to maintain as the clock kept ticking down, and each day passed with no positive news about a match.

Since Katie had been adopted from China, and racial heritage is an important factor in finding a match, we thought potential donors would more than likely come from her country of birth. Our intuitions were confirmed when the geneticist from the National Marrow Donor Program (“Be The Match”) compared Katie’s HLA typing with gene pools around the world. Not surprisingly, the greatest concentration of similar gene pools was found not just in China itself, but in Katie’s birth province of Guangxi and in neighboring provinces.

Prompted by our increasingly desperate search for a donor and the geneticist’s findings, a decision was made that I head to China to see if I could increase Katie’s odds of survival. It was a leap of faith, but one we felt need to be taken.

News of our plea for donors and my trip to China was covered locally by Sacramento’s News 10; around the United States by various news sources, including MSNBC; and China’s largest national news service, Xinhua. I returned home to Sacramento hopeful that a match would soon surface. (2)

Sadly, no perfect marrow or peripheral blood stem cell matches were found. Our hopes were now pinned on an umbilical cord blood transplant, a viable alternative for patients if other options fail. We accepted this new reality, and proceeded to Stanford with our hopes changed, but still high.

Katie’s transplant day was October 22nd, 2010. Time passed slowly in the isolated transplant wing of the hospital as we waited for the stem cells to engraft. Day after day – nothing. Two more infusions of cord blood stem cells were given; still no engraftment. Complication after complication followed. Christmas came and went.

On December 30th a “family care meeting” was called. The scenario painted by the doctors was bleak and, in all probability, would only get bleaker. Arrangements were made for Katie to immediately return to Kaiser’s Roseville hospital. Hospice services were quickly set up in our home. Katie went peacefully and sweetly into the arms of Jesus on January 6, 2010.

Life has forever changed for our family. Our hope now is that others will never have to face what our family did. But there is still work to be done to fulfill that hope.

“There are currently three teenage girls at Kaiser Roseville who are in need of transplants,” Dr. Kent Jolly, pediatric oncologist at Kaiser Roseville, informed me. “Two of these patients are from minorities; one is Caucasian. All three are having problems finding suitable matches, and the families are now considering umbilical cord stem cells, or even incompletely-matched marrow transplants."

Thankfully, a perfect match was found for Caleb, and he is doing great today. His donor made the difference. Could you possibility be a life-saving donor? Absolutely!

Vicki Wolf, BloodSource Communications Manager says, “People in the Sacramento area between the ages of 18-60 years old who are generally healthy and committed to donating to anyone in need can join “Be The Match” marrow registry through BloodSource at no cost to the registrant at this time.”

“We believe that marrow transplants can offer a second chance at life. As long as patients like Katie are in need, we hope to help not only by providing blood products, but in educating and recruiting committed people to join the marrow registry, especially those of diverse heritage” Wolfe states.

If you would like to join the registry, or would like to hold a marrow registry drive through BloodSource, please call at 866.822.5663. You can also go online to “Be The Match” at http://marrow.org/Home.aspx

Butterflies are exquisite but short-lived creatures. They emerge from their cocoons, and flutter into our lives bringing us delight, then quickly fly away. Such was our dear daughter, Katie.  We wish you could have stayed longer.

(1) http://www.aadp.org/learn/faqs/

(2) http://katiecramer.org/news-stories

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