About Nayelis:

Nayelis was diagnosed with Acute Myeloid Leukemia (M7) on June 17, 2009, at the tender age of 8 1/2 months old. She was immediately started on a chemotherapy regiment, and quickly went into remission after the first cycle. Because the subtype of AML she has is difficult to get into remission after a relapse, Nayelis was given three more cycles of chemo and then had a cord blood transplant on October 30th, 2009 at Memorial Sloan Kettering Cancer Center in NY, NY. The transplant was successful, and after 5 months being away she was allowed to return home.


In April of 2010, Nayelis became sick, and we were later informed that she had relapsed. Not only did the cancer return in spots of her body, but a chloroma (tumor) had also formed in the nasal cavity/sinus area. Not only did she have to start chemotherapy again, but she also underwent direct radiation. She received 6 cycles of chemotherapy and 12 sessions of radiation. As of November 2010, Nayelis went into remission.


On April 25, 2011, we were informed that Nayelis had relapsed. The cancer is back. She was admitted to Yale New Haven Hospital for further treatment. This is her third fight against this evil disease. She has been given three cycles of chemotherapy. After CT Scans, MRI's, bone marrow aspirates and biopsies, we were told that Nayelis is at a good place with no leukemic cells in her body.


Now the next step is: TRANSPLANT. AGAIN!


Nayelis was admitted to Memorial Sloan Kettering Cancer Center in NY, NY on 9/1/11. Where she was started on chemo therapy and radiation for 7 days. Her 2nd double cord blood transplant took place on 9/9/11. After the days of ANC being zero, Nayelis' bone marrow finally engrafted! Nayelis was discharged from MSKCC on 10/31/11.


Overall, Nayelis had been doing well post transplant. She was eating and gaining weight. There were no signs of GVHD.


On March 12, 2012, we received the dreaded news once again: RELAPSE.

We were told that the goal has changed from curing the leukemia to trying to control it and keeping Nayelis comfortable. Our world has once again crumbled, but our faith has not. We continue to pray for Nayelis' miracle.

AS of 5/5/2012, Nayelis has earned her angel wings. She will forever be 3 1/2 years old.

Tuesday, May 5, 2015

Nayelis

Love.
ləv/
noun
1. an intense feeling of deep affection.
"babies fill parents with intense feelings of love"
synonyms:  deep affection, fondness, tenderness, warmth, intimacy, attachment, endearment; 

There are many different types of love.
The love you have for a parent, sibling or family member. 
The love of/for a friend or a pet.
The love for life. 
The love for your soulmate, your significant other, your other half. 

Then there is the love for your child. 
A child you carry within you for 9 months, technically 10. 
The one to teach you what unconditional love is.  
The one who you will move heaven and earth for to make sure he/she is safe. 
The one you put before yourself in any situation because life is 
No longer about you, but about him/her. 

There is also the love of a child. 
A one of a kind love, one with no conditions, no pretense, no judgement. 
One that is always and forever. 
It has no boundaries, it has no limits.
It has purpose. 
It teaches you to live again. It gives you reason. 

Nayelis. 
She was a special kind of love. 
She gave me wings and taught me to fly. 
She was my strength, as she showed me how to be strong. 
She taught me to fight even when there was no more fight in me.
She gave me purpose to continue.
She was perfect. 
Too perfect for this imperfect world. 

Three years since she took her last breath. 
One hundred  and fifty six days since I last held her.
One thousand ninety five days living with a broken heart.

Nayelis. 
The definition of strength, faith and love. 

 




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