Update on my FA (Fanconi Anemia) Friends

Me with John Hanna 

I met my friend, John Hanna (age 38), when I came to NYC  in November.  In 2007 he was diagnosed with tongue cancer, which can be a complication of FA.  Unfortunately, John passed away a few weeks ago after a long battle with head, neck and throat cancer.  John was a huge inspiration to all of the FA community and will really be missed.  Please be in prayer for his wife, Racquel, and their two daughters during this difficult time.

Me, Edwin and his mother who was his donor

Me, Edwin and Dr. Boulad

I also met Edwin (age 27) when I came to NYC in November.  He had been diagnosed with MDS (Myelodysplastic Syndrome) and had a bone marrow transplant mid November.  His transplant went well and he got to go home.  But, he has been back in the hospital for over two months now battling CMV (Cytomegalovirus) and some other complications.  Please continue to be in prayer for him and that he will be able to leave the hospital soon!  He is engaged to a beautiful girl named Yalitza and they just celebrated their five year anniversary!

Foto Friday

Right now I am still living in isolation as my immune system is recovering from transplant.  The only indoor places I can be are at my apartment and the hospital.  I have to wear a mask when I go to the hospital or ride in a cab.  But, I am very thankful that I can walk outside as much as I want without wearing a mask.  The weather is getting warmer and I am able to go for daily walks.  I have walked around in Central Park and taken a few carriage rides.  Fortunately, we live about 6 blocks from the East River.  There is a walkway along the river that leads to Carl Schurz Park.  I love going for walks while listening to worship music on my iPod shuffle.  This is one thing I will miss about NYC.  Here are a few pictures of the walkway and park.

It Takes a Village

One of my lowest points throughout these past months was saying goodbye to my children on the morning of November 29^th, not knowing if I would ever see them again in this life. I kissed them and hugged them with tears streaming down my face.  Matt took the boys to daycare and I sat there in a lonely, quiet house and thought about the fact that someone else would be picking them up from daycare that day.    When Matt got back we headed for the Atlanta airport and I think I cried all the way to the Cartersville exit.  

I love everything about being a Mom.  I love dressing my boys, feeding them, going on family outings, reading to them, playing with them, watching movies with them, teaching them new things, and the list could go on and on.  I had no idea the joys that I was missing out on before becoming a parent.   It is so much fun!   When I started getting sick in August, I was physically unable to do certain things for my children.  At first we thought that I was tired from the adjustment to having children.  As the weeks went on and on I could do less and less.  I developed some horrible pain in my wrists and my knees.   I couldn’t even pick up my boys or give them a bath. On the nights Matt got home late I had to have someone meet me at my house to help me feed, bathe and put my children to bed.   It broke my heart that I was not able to care for them the way a mother should.

I truly believe it takes a village to raise a child, especially when you go through a circumstance like I have these past months.  I have not worried about my children one time.  I know that they are in good hands.  I am so thankful for my family (my Mom and Dad, Matt’s Mom and Dad, Brad, Angela, Blakely, Barrie, etc.).  I am thankful for every children’s volunteer at Rock Bridge Community Church who has loved and cared for my children.  I’m thankful for the First Baptist Daycare for taking care of Eyasu and the First Methodist Daycare for taking care of Abreham.  I am thankful for all of the pictures and texts people have sent me about my boys.  My boys are happy and very well adjusted because of the love and care of so many people during this time!  THANK YOU!

I am thankful for Skype and Facetime on iPhone.  It’s so wonderful to see videos and pictures of my boys.  They have both grown so much. Abreham, who is 18 months old and weighs 33 lbs., is now wearing Eyasu’s 3T hand me downs. I still don’t know if I am going to be able to pick him up!!  And Eyasu’s English is so good that I can have a conversation with him. 

It’s been four months since I have seen my boys, but this past Monday we booked a flight for Eyasu and Abreham to come to the Big Apple on May 1^st.  So, it’s only 31 days until I get to see my boys!  Yay!! I am very excited.  Please pray that we will all stay healthy for this visit.

My doctors believe I will be here in New York through June.  That’s just three more months!!  In three more months, I will be able to care for my boys and do all of the things that a Mom loves to do!  Until then, my boys have a village of people to support, love and nurture them.  And for that, I am eternally grateful!

Abreham with Buddy Henley

Hanging out with cousin Barrie

Abreham with a friend at Daycare

Eyasu with Granddad

Trip to Ethiopia to Bring Home our Boys

One year ago today Matt and I boarded a plane headed for Ethiopia to bring home our boys, Eyasu and Abreham.  Here is a highlight video from our trip!

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!

Foto Friday

Things You See from Plane Windows

I love having a window seat on a plane, especially on a clear day or night. You can see houses, swimming pools, cars, mountains, etc. On Sunday, March 28, 2010, Matt and I boarded a plane headed for Ethiopia. I was very pleased that I had a window seat on both flights. These plane rides were ones filled with expectations, high hopes and dreams, as we knew that our children were waiting for us on the other side.

On the second flight from Germany to Ethiopia the skies were clear and I was able to see the Mediterranean Sea. It was so blue and beautiful. As the plane flew over Northwest Africa all I could see was desert for hours. It was overwhelming! We flew over Khartoum, Sudan and there was no green in sight! Only desert. And then all of the sudden there was GREEN as we flew closer and closer to Ethiopia.

Fast-forward about 8 months to November 16th. This is the day that I was officially diagnosed with MDS at Memorial Sloan Kettering Hospital in NYC. The next day, November 17^th, Matt and I boarded a plane at night headed back to Dalton, GA with very heavy hearts. It was also the day of our 9^th wedding anniversary, but there wasn’t much celebrating! Months before we had boarded a plane to Ethiopia filled with high hopes, but this flight was filled with much different emotions. I had a window seat again and as the plane took off, we could see the NYC skyline. I was listening to a song called “Healer” by Kari Jobe. As I looked out the window of the plane there was one thing that stood out to me. Little GREEN football/baseball fields lit up with lights. They were everywhere I looked. And I began to think about how much I was looking forward to Abreham and Eyasu playing sports. My heart began to break as I thought that I might not be here to experience this with them in the future! Tears began to stream down my face. I tried to just look out the window so that Matt wouldn’t see my tears. I wanted to be strong, but I felt so very helpless and weak in that moment.

Sports had been an important part of my life growing up. All three of my brothers played football and they were 13, 10 and 7 years older than me. I remember them teaching me how to throw a spiral, run routes and catch passes in our back yard. When Matt and I found out that we were adopting two boys, one of my first thoughts was that I could not wait to teach my boys how to throw a perfect spiral! And sitting on that plane that night I was heartbroken because I didn’t know if I would ever get to experience this with the children that God had given me just 8 months earlier. I continued to listen to “Healer” by Kari Jobe over and over again.

“Healer” by Kari Jobe

You hold my every moment

You calm my raging sea

You walk with me through fire

And heal all my disease

I trust in You

I trust in You

I believe You’re my healer

I believe You are all I need

I believe

I believe You’re my portion

I believe You’re more than enough for me

Jesus, You’re all I need

Nothing is impossible for You

Nothing is impossible

Nothing is impossible for You

You hold my world in Your hands

In the midst of being heart broken in that moment, God used the words of this song to bring me hope because nothing is impossible for him! He surely does hold my world in his hands. He also holds Eyasu and Abreham in his hands. Someone is going to teach them to throw a perfect spiral on a field of GREEN! I long for it to be me, but I’ll just have to trust that God has a perfect game plan.

"With man this is impossible, but with God all things are possible." Matthew 19:26

"Healer" by Kari Jobi http://www.youtube.com/watch?feature=player_embedded&v=W_1e_Yy8MaI