August 26, 2014 is a day that will forever be branded in our minds. That’s the day our doctor told us “Your daughter, Eva, has leukemia”. When you hear the word “leukemia” and you aren’t prepared, the word scares the hell out of you. You’ve heard it before but really what is leukemia?
We were terrified. Genetic testing showed that Eva had a high-risk form of leukemia with a higher chance of the disease coming back after treatment and lowered chance of long term survival.
We began hearing new words like “bone marrow transplant” and “donor” and found out that Eva’s life would be in the hands of a complete stranger.
Chemo could kill the cancer and doctors could give our daughter a fighting chance, but without a bone marrow transplant, there was no chance for long-term survival. We immediately began the search for an unrelated donor on the Be The Match Registry®. Doctors said it could be months before a match might be found, and that there was a chance we’d never find one.
Soon we hit 90 days since Eva’s diagnosis, 80 days in the hospital in isolation, and two rounds of intense chemo and recovery.
Then the most wonderful thing happened. Our nurse gave us the news that Eva had a match. Someone was willing to give Eva a second chance at life. It was an amazing feeling to think that in all of the world someone had said, “I don’t know you, but I am willing to give to you what I have.”
Our hematology/oncology and bone marrow transplant teams worked together set a transplant date, and confirmed with “our donor” that the date worked with them and they were ready to move forward.
Leukemia can be a rollercoaster ride. Plans can change quickly. Eva developed an infection following chemo. We received heartbreaking news that Eva was not healthy enough for her transplant. She would need another round of chemo.
As scary as this was, we wondered about the donor. Would they want to continue with us after this change in plans? We were happy to learn that our donor was flexible with Eva’s needs and a new transplant date was set.
Eva contracted another infection following the next round of chemo and needed surgery. This pushed out the transplant date…again. We were worried. Our donor had to be struggling and anxious with all of these changes. We couldn’t imagine what they were experiencing. They didn’t know Eva or our family. We were strangers.
A new transplant date was set yet again. We were all looking forward to it. It became a day of hope.
After the last round of chemo, we checked into the Ronald McDonald House so we could be close to the clinic for more tests. Everything seemed to be going well until Eva suddenly developed a fever. Such a simple word can carry so much fear when battling leukemia. A fever literally scares you to death because her immune system wasn’t strong enough to fight off infections.
Then we got the news we never wanted to hear. After many tests, our team called me and my wife into a small room. They said, “We have done all we can for your daughter. It’s time to take her home and spend her final days with family”.
I cried during the drive home, but somewhere along the way I had a thought that cut me to the core: What and how would they tell “our donor”? This is someone who said, “I will do what I can to help.” After all the tests and the many date changes, it’s now all over. This person doesn’t know us and as far as they knew, they were going to help save a life. How would they tell this person and how would they take the news? My heart went out to our donor.
We said good bye to our baby three days after her 17th birthday. To say it was hard to get back to what was now our life does not come close to describing it.
It wasn’t long after we started thinking about “our donor” again. This person had been so much a part of our lives for months and even today holds a special place in our hearts.
We want to take this time to thank all of the special people out there who come forward and offer to give life to others. Many complete the process and are able to enjoy contact with the patient and their families. Others are never matched. Others, like our donor, are selected and for some reason the process stops before the transplant.
You are all heroes in our heart and the hearts of other families. I hope this note is read by “our donor” and they know how much you mean to us. Thank you for saying yes over and over again. You will always be in our hearts, minds and prayers.
Thank you cannot express our deep appreciation but what more can we say, thank you.