Wednesday, November 16, 2011

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 17th, 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 9th 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!  

Friday, September 23, 2011

Foto Friday!

Dr. Boulad with my Mom.  I am so blessed to have such an
amazing mother!  She has taken such 
good care of
my children while I have been away
 and has also spent a lot
of time staying with me
 up in NYC.  I've enjoyed the time we
have spent 
together.  She has such a servant's heart and

 has always been a great role model for me. I am so proud to
call her my mother.


Catherine is one of the Bone Marrow Transplant Nurse 
Practitioners.  She is amazing and always there to help with
 whatever I need.  She is pregnant with her first child and is 
due in December!

These are the stem cells that saved my life.  So thankful 
for a donor who was willing to sacrifice and give!  The
 transplant is given through IV and the stem cells spread out into
 bone marrow all over your body.  Isn't that amazing?

Dr. Boulad is the most compassionate doctor I have ever met and
he knows everything about Fanconi Anemia. He saved my life!  I was
diagnosed in November and had my transplant five weeks later.
He worked very quickly moving me to transplant and I am very
 thankful for that!  He is joyful and positive and always joking
around with his patients to keep their spirits up even during the
most difficult times.

This is Greg!  He calls me about appointments and always 
asks how I am feeling.  He does a great job keeping the 
Pediatric Day Hospital organized.

This is nurse Nancy.  She was taking care of me the night
my oxygen levels dropped to 70%.  She sprung into action and
I was moved to the Pediatric Observation Unit where they
could watch me more closely.  I was there for 7 days and
thankfully my lungs fully recovered.

This is a picture of Dr. Prockop giving me the bone marrow transplant
on December 29th, 2010.  It was the best Christmas
present I have ever received!

This is Adrian, one of my primary nurses.  She is amazing
and took such good care of me.  She always had a positive and
uplifting attitude and could always make me laugh.

Here is Matt folding my laundry while I was in the hospital.
I am so thankful for my amazing husband.  He has been my
rock throughout this whole process.  He has such a positive
attitude and has been so compassionate and patient.  I am so
thankful I married my best friend and that he loves Jesus even
more than me!  Our love for each other is stronger than ever!

A few of the Bone Marrow Transplant team members. 

Me with no hair!  I always wondered what I would look like bald!

Dr. Boulad giving me T cells to fight EBV.

Dr. Prockop giving me T Cells to fight EBV.  She is currently  
doing a research study on the effectiveness of using T Cells
to fight EBV.   I am thankful that it’s working!!

This is Nurse Practitioner Nicole.  She has been
a great encourager to me throughout the
past year.  I have chipmunk cheeks in this
 picture from being on steroids.  Thank
goodness my cheeks are back to normal now!

Sunday, April 10, 2011

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!

Friday, April 1, 2011

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.

Thursday, March 31, 2011

It Takes a Village

One of my lowest points throughout these past months was saying goodbye to my children on the morning of November 29th, 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 1st.  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

Monday, March 28, 2011

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!