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.

Friday, September 12, 2014

I remember ...

Sitting here thinking of the joy you brought to others, the joy you brought to me. I remember this one particular moment where hearing your laughter was music to my ears because besides all the hospital visits with needles and chemo, you always managed to laugh.

January 2011. I remember being in the kitchen with you and Nandy. I remember you guys eating dinner, and of course you were eating your Chef Boyardees’ Guettis and Meatballs as you called them.  I remember putting Nandy in the tub, and running to the room to get his towel. Then all of a sudden I heard a big splish splash, and giggles coming from the bathroom. I ran back to find you fully clothed, in your Dora pajamas, inside the tub with the biggest smile on your face.  I couldn’t help but to start laughing encouraging you to continue having fun in the water. I laughed even harder as I noticed your diaper expanding to the water.  You were having so much fun splashing water with your brother, and the looks on both of your face I stored deep into my heart.

It’s these memories that keep me going. I would give anything to hear your laughter and see you having fun again, Beba. You are missed more than you can imagine. Till I see you again, I carry you in my heart.

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