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!  

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!

Abreham's 2 Year Old Birthday Party.mov

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

A Positive Perspective on Cancer

I never really had any desire to start a blog. In fact, I almost deleted my facebook account in early November. I am very thankful that I didn't delete it because it has been such a source of encouragement to me and a way to stay connected to the real world and people I love and miss. I am so thankful for all of your thoughts and prayers and kind words! They have lifted me up and given me strength to endure these past months!

The name of my blog is "8twenty8" because my life verse is Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." The circumstance I am in right now has really brought this verse to life for me. I desire so much for God to take a terrible situation and use it for HIS good! I want to take every opportunity to share God's story and miracles throughout this process. I can't share enough in a facebook status so I thought I would start a blog. I am finally feeling well enough to consistently share how I have seen God work and move these past few months! There have been many ups and downs (I will share both). But one thing remains true no matter the outcome! God is good!

After coming to NYC in early December we continued to receive bad news. In December, my condition went from MDS (pre-leukemia) to AML (Acute Myeloid Leukemia) in a matter of days. I was homesick. I missed my boys and didn't know if I would ever see them again. I was feeling every emotion you can imagine. At one of my lowest points, I was searching the internet one night and found "Don't Waste Your Cancer" by John Piper, who is a prostate cancer survivor. His words have brought me much encouragement and helped give me a correct perspective of my current circumstance.

The following Material is from Don't Waste Your Cancer by John Piper, copyright 2010

1. You will waste your cancer if you do not believe it is designed for you by God.

It will not do to say that God only uses our cancer but does not design it. What God permits, he permits for a reason. And that reason is his design. If God foresees molecular developments becoming cancer, he can stop it or not. If he does not, he has a purpose. Since he is infinitely wise, it is right to call this purpose a design. Satan is real and causes many pleasures and pains. But he is not ultimate. So when he strikes Job with boils (Job 2:7), Job attributes it ultimately to God (2:10) and the inspired writer agrees: “They . . . comforted him for all the evil that the Lord had brought upon him” (Job 42:11). If you don’t believe your cancer is designed for you by God, you will waste it.

2. You will waste your cancer if you believe it is a curse and not a gift.

“There is therefore now no condemnation for those who are in Christ Jesus” (Romans 8:1). “Christ redeemed us from the curse of the law by becoming a curse for us” (Galatians 3:13). “There is no enchantment against Jacob, no divination against Israel” (Numbers 23:23). “The Lord God is a sun and shield; the Lord bestows favor and honor. No good thing does he withhold from those who walk uprightly” (Psalm 84:11).

3. You will waste your cancer if you seek comfort from your odds rather than from God.

The design of God in your cancer is not to train you in the rationalistic, human calculation of odds. The world gets comfort from their odds. Not Christians. Some count their chariots (percentages of survival) and some count their horses (side effects of treatment), but we trust in the name of the Lord our God (Psalm 20:7). God’s design is clear from 2 Corinthians 1:9, “We felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” The aim of God in your cancer (among a thousand other good things) is to knock props out from under our hearts so that we rely utterly on him.

4. You will waste your cancer if you refuse to think about death.

We will all die, if Jesus postpones his return. Not to think about what it will be like to leave this life and meet God is folly. Ecclesiastes 7:2 says, “It is better to go to the house of mourning [a funeral] than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart.” How can you lay it to heart if you won’t think about it? Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering your days means thinking about how few there are and that they will end. How will you get a heart of wisdom if you refuse to think about this? What a waste, if we do not think about death.

5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.

Satan’s and God’s designs in your cancer are not the same. Satan designs to destroy your love for Christ. God designs to deepen your love for Christ. Cancer does not win if you die. It wins if you fail to cherish Christ. God’s design is to wean you off the breast of the world and feast you on the sufficiency of Christ. It is meant to help you say and feel, “I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord.” And to know that therefore, “To live is Christ, and to die is gain” (Philippians 3:8; 1:21).

6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.

It is not wrong to know about cancer. Ignorance is not a virtue. But the lure to know more and more and the lack of zeal to know God more and more is symptomatic of unbelief. Cancer is meant to waken us to the reality of God. It is meant to put feeling and force behind the command, “Let us know; let us press on to know the Lord” (Hosea 6:3). It is meant to waken us to the truth of Daniel 11:32, “The people who know their God shall stand firm and take action.” It is meant to make unshakable, indestructible oak trees out of us: “His delight is in the law of the Lord, and on his law he meditates day and night. He is like a tree planted by streams of water that yields its fruit in its season, and its leaf does not wither. In all that he does, he prospers” (Psalm 1:2). What a waste of cancer if we read day and night about cancer and not about God.

7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection.

When Epaphroditus brought the gifts to Paul sent by the Philippian church he became ill and almost died. Paul tells the Philippians, “He has been longing for you all and has been distressed because you heard that he was ill” (Philippians 2:26-27). What an amazing response! It does not say they were distressed that he was ill, but that he was distressed because they heard he was ill. That is the kind of heart God is aiming to create with cancer: a deeply affectionate, caring heart for people. Don’t waste your cancer by retreating into yourself.

8. You will waste your cancer if you grieve as those who have no hope.

Paul used this phrase in relation to those whose loved ones had died: “We do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope” (1 Thessalonians 4:13). There is a grief at death. Even for the believer who dies, there is temporary loss—loss of body, and loss of loved ones here, and loss of earthly ministry. But the grief is different—it is permeated with hope. “We would rather be away from the body and at home with the Lord” (2 Corinthians 5:8). Don’t waste your cancer grieving as those who don’t have this hope.

9. You will waste your cancer if you treat sin as casually as before.

Are your besetting sins as attractive as they were before you had cancer? If so you are wasting your cancer. Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack. Don’t just think of battling against cancer. Also think of battling with cancer. All these things are worse enemies than cancer. Don’t waste the power of cancer to crush these foes. Let the presence of eternity make the sins of time look as futile as they really are. “What does it profit a man if he gains the whole world and loses or forfeits himself?” (Luke 9:25).

10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.

Christians are never anywhere by divine accident. There are reasons for why we wind up where we do. Consider what Jesus said about painful, unplanned circumstances: “They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name’s sake. This will be your opportunity to bear witness” (Luke 21:12 -13). So it is with cancer. This will be an opportunity to bear witness. Christ is infinitely worthy. Here is a golden opportunity to show that he is worth more than life. Don’t waste it.

Material is from Don't Waste Your Cancer by John Piper, copyright 2010.© Desiring God