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.

Thursday, June 16, 2016

6/16 ... I will always remember.

June 16. 
Something as simple as today's date can trigger a dam of emotions to erupt. Though it's been 9 years, the events of that day will forever be engraved in my memory. The mind can be very powerful as it plays tricks on you; bringing things to the present as if it were happening in the now. 

I remember every little detail of that day. 
I remember staying home from work that day because Nayelis' fever was still on and off, ranging from 100 - 103. 
I remember sitting at my mother's kitchen chair when she lived on Noble Avenue as I tried calling the pediatrician for the umpteenth time. 
I remember him saying that if her fever was still high to just take her to the emergency room again. Mind you we had just taken her to the ER two times in a matter the past 4-5 days. 
I remember Omar arriving to my mother's place after a long day at work.
I remember packing up Nandy and Nayelis into their respective car seats and making our way to Bridgeport Hospital. 
I remember getting there, being at triage then placed in a room. 
I remember Dr. Rao, who we knew from the SouthWest Clinic, being the doctor on call that day; I remember reiterating to him what we had told the other ER doctors in the past few days. 

"Yes Dr. Rao, her fever has been on and off for the past week. Yes we have been giving her Motrin and Tylenol every four hours. She's been very sleepy and barely eating. When she does eat, she then throws it up. She's had chest X-ray done, but everything looks clear. Her urine was checked to make sure it wasn't an infection. These spots? I asked the doctors and they said it was just a rash. Do you think it's something else?" 

I remember him saying that a nurse will be coming in to do blood work. 
I remember the nurse came in, took a few Tubes of blood and went to send them out. 
I remember Dr. Rao coming back and observing Nayelis again; his expression was of concern, as though he suspected something and wasn't telling us just yet. 
I remember him leaving the room again and just leaving us in the room trying to figure out what else it could be. 
I remember him coming back and telling us they wanted to admit her overnight for observation. 
I remember deciding I would spend the night with her and Omar would go home with Nandy. 
I remember this feeling in the pit of my stomach that just wouldn't go away; a mother's sixth sense they call it. 
I remember walking along side the crib, as it was being wheel'ed to the 7th floor. 
I remember the nurse introducing herself and getting us comfortable for the night. She stated the doctor would be in shortly. 
I remember this older doctor walking in; he had salt and pepper hair; grandfather looking. He introduced himself and just keep looking at Nayelis with a sad look as though he knew something he was not telling me. He asked for Omar and I told him he had gone home with out other little one. The doctor requested that I called Omar back so he could tell us both what was going on. 
I remember my heart dropping. 
I remember taking a deep breath and telling the doctor that of it were something wrong, he had to tell me first so I could know how to break it down to Omar. 
The doctor looked at Nayelis again, and went on to tell me that her blood work came back with two many white blood cells, and some were blasts. He explained that although the blood work showed that, there were other testing that needed to be done and The Children's Hospital at Yale had the best equipment for that. He stated there was an ambulance on its way to pick us up and rush us there. 

I remember looking at him like he was an alien with three heads. Calmly, I looked at him and demanded he tell me what this all means. 
He went to explain that Nayelis was showing symptoms of leukemia.

Leukemia? That's cancer Doc. 
You are telling me my daughter has cancer, but it can't be. Not my daughter. I only hear about this on television when the St. Jude's commercial comes on.
How naive I was at that moment. 

I remember looking at Nayelis as she smiled at me.
I remember looking at the doctor again and wondering if what he was saying could possibly true. 
I remember picking up the phone as tears started rushing down my eyes. Slowly I marked Omar's number, and took a deep breath as I calmly told him he had to get back to the hospital because the doctor wanted to talk to us both. 
I remember him getting there at the same time the ambulance had gotten there.
I remember climbing into the back of the ambulance alongside my 8 month old daughter and speeding down I95 towards New Haven. 
I can still hear the sirens, I can still feel my stomach drop as it did then.

June 16, 2009. 
It might not be remembered by many, but it is a date I will never forget. 







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