A Time for Everything

One year ago today I was sitting in a doctor’s office in NYC hearing the news that would change my life forever.  On November 16, 2010, Dr. Boulad, officially diagnosed me with High Grade MDS, which turned into AML (Acute Myeloid Leukemia) within weeks.  Needless to say, Matt and I were devastated.  We left the hospital that day in disbelief and silence.  When we arrived back at our hotel I began to feel a sense of hopelessness that I had never experienced before.  I remember thinking what terrible timing!  I had lived 35 years with Fanconi Anemia with no big issues.  Why now?  Why did this have to happen only months after we had adopted Eyasu and Abreham from Ethiopia.  Did God not want me to be their mother?  We had thought our lives were just beginning, but at that moment it seemed like mine was coming to an end.  

The next morning, November 17^th, Matt and I woke up and began packing for our flight back home.  I looked down at my iPhone and saw the date and mumbled flippantly to Matt, “Happy Anniversary.”  It was our 9^th wedding anniversary, but there was nothing happy about it.  We were both grieving and hurting over the news we had heard the day before.   

Looking back at the past year I have often been reminded of a passage of scripture that tells us there is a time for everything. 

"There is a time for everything, and a season for every activity under heaven: 
a time to be born and a time to die, 
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace."
Ecclesiastes 3:1-8


There are many things that God has taught me this past year.  I have learned that He never leaves us.  I have learned that He grieves with us and that no tear goes unnoticed by Him.  I have learned how much He shows His love for us through the body of Christ. I have learned that there is a time for everything!  Life is full of many ups and downs.  If we never experience the valleys in life we won’t fully appreciate the mountain tops.

One of the greatest lessons I have learned is that God’s timing truly is perfect.  If I had gotten sick before we adopted Abreham and Eyasu they would not be our children.  God waited until we had them and then he chose to heal me.  The bone marrow transplant has healed the blood part of Fanconi Anemia, but all of the other cells in my body still have the defective gene.  I still have a very high risk of getting other cancers.  The oldest known person with Fanconi Anemia is 51.  I’d love to break that record!  I would love to live 50 more years and see my boys grow up and have families of their own.  I would love to see what God has in store for their lives and have a ringside seat to watch it all unfold! But, I have to trust that God has a plan and his timing is perfect.

Through this past year, I’ve also learned not to sweat the small stuff.  Matthew 6:34 says, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  I never truly understood this verse until now.   I want to live each day to the fullest treasuring every moment that God gives me.  When I get to heaven I will worship and praise God with no sin to hinder, but I want to have more time to love and serve him here on earth despite my sinful state.  Unconditional love and service. 

Living with a life threatening disorder all of my life has caused me much worry and stress, but not anymore.  I’m no longer going to worry about tomorrow or five years from now.  I am no longer going to live in fear of what might happen.  I am holding my hands up in complete surrender.  I am waving the white flag.  I am giving up control.  God has much bigger plans that I could ever imagine.  I don’t have to worry about the future.  God already has it all planned.

Another thing I have understood more deeply this year is the gift that God gave me as a husband.  Matt is my best friend and I couldn’t imagine going through this past year without him.  He has been my rock and has loved me unconditionally.  I have felt the love of Christ through him.  And when I wake up tomorrow morning, November 17, I will not flippantly mumble to Matt, “Happy Anniversary.” There is a time for everything and this is a time to celebrate 10 wonderful years with the man that God chose for me.  And he chose well!

I sit here on November 16, 2011, feeling much different emotions than I did one year ago.  Instead of weeping, our house is full of laughter.  Instead of silence, there is the sound of joy.  Instead of thoughts about death, our house is full of life!  Instead of mourning, there is much dancing. There is a time for everything.  Today is a time to heal, to build, to embrace, to mend, to love and tomorrow to CELEBRATE!  

The Gift that Keeps on Giving

I’ve known most of my life that I might have to have a bone marrow transplant at some point because of Fanconi Anemia. This became very real when my brother, Barry (see picture on left), went into complete bone marrow failure at the age of 19. I was 12 years old at the time and I remember talk of a transplant for him. All of my family was checked to see if we could find a related match. But, the only perfect related match for Barry was me. So of course I was not a suitable donor because I also had FA. Unrelated bone marrow transplants had a very low success rate 23 years ago. So, there was nothing that could be done for Barry and he died in June of 1988.

About two years ago, Matt and I felt that we needed to be proactive with my health because risks increase with age when you have FA. So, in May of 2009, Matt and I made an appointment at Memorial Sloan-Kettering in NYC to meet with Dr. Farid Boulad, a FA specialist and bone marrow transplant doctor (see picture on right). At that point, everything looked great. Dr. Boulad went ahead and entered me into the bone marrow registry just in case something happened in the future. I know God prompted us to do this because he knew exactly what would happen a year and a half later. He wanted us to be prepared!

I was diagnosed with MDS (Myelodysplastic Syndrome) on November 16^th, 2010 and the search for a donor began. Dr. Boulad wanted the transplant to take place in 3-5 weeks because the MDS was probably going to slip into AML (Acute Myeloid Leukemia), which it did within weeks. I was very blessed to have some 10/10 perfect matches in the registry. It looked like the transplant was going to take place right around Christmas. My first thought was, “Who is going to spend their Christmas vacation at a hospital donating marrow?” But, a few weeks later, Dr. Boulad called and said they had found a 10/10 match. Someone had said, “yes!” The only thing I could know was that it was a young female donor. For the first year after the transplant, the identity of the donor and recipient is kept anonymous.

So you can imagine my surprise when about two weeks after my transplant, a young woman walked into my hospital room and said, “Here is a note from your donor.” I almost burst into tears. I was completely shocked to get a note and so soon. I asked if this was common and she said, “no.” The note had to be very generic and not reveal anything personal about the donor. Here is what the note said:

“I hope that you have a speedy recovery. I’m really glad I was able to donate stem cells to you. When I first signed up to be on the registry I was told that the chances I would be called to donate were slim, so when I got the call I was really excited to be able to help you.

Thinking of you,

Your Donor :)

I wrote a note to my donor today and expressed to her my gratitude for her sacrifice. I told her that I had just adopted two boys from Ethiopia in April and that her gift is going to give me the opportunity to raise my boys! I told her that we would have to meet someday so I could thank her in person. I want to throw her a big party! I cannot wait to hear her side of the story and know what made her decide to donate.

My donor gave marrow on December 27^th, just two days after Christmas, and I had the transplant on December 29^th. I’ve received some great Christmas gifts throughout the years, but this Christmas I received the gift that keeps on giving.

There is a great need for people to join the National Bone Marrow Registry. Thousands of patients with leukemia and other life-threatening diseases depend on the registry to find a match to save their life. Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. Donors with diverse racial or ethnic backgrounds are especially needed.

If you would like to know more information about becoming a bone marrow donor, please go to www.bethematch.org. You could be the one that gives someone else the gift that keeps on giving!