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.

Wednesday, July 30, 2014

2 years, 2 months and 26 days...


That's how long it's been since we last held Nayelis in our arms...since we last felt her breathing. 

Seems like so much time has passed by if you go by the dates, yet it all feels like it was just yesterday. I can close my eyes and I feel her here with me. I can hear her breathing. The smell of the hospital room still lingers. 

Sleepless nights have come and gone (and I am thinking tonight is one of those nights). I stay up wondering if you know much you are loved and missed. But deep down I know that you walk with me everyday, guiding and protecting your loved ones. 

We have been keeping our promise to you. The one that was made just before your passing. That was to keep fighting in your name and honoring your memory so that other families won't have to endure what we did, and still continue to do. 

This past weekend, Daddy, Nandy and me traveled to Boston, MA. We met with the 46 Mommas there, and on Sunday July 27, 2014, we braved the shave. Yes Mommy and Daddy went bald again in your memory and all for a good cause! I felt your presence there because as the hair came off a feeling of joy just took over my body. I knew you were proud of us. 









It was the most amazing experience ever. Though it was my 2nd time doing it, this was daddy's first. And he did this for you baby girl. We love and miss you more than words can ever describe. 
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