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. 

Tuesday, May 5, 2015


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. 

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.

The definition of strength, faith and love. 


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.

Thursday, September 11, 2014

Memory of Light up sneakers

Yesterday, as I sat watching Nandy doing his basketball clinical, blinking lights caught my eye to the left of me. Curiously, I turned sideways and saw a little boy about the age of 4, going up and down the bleachers. On his feet he wore a pair of those light up sneakers I remember wearing when I was a younger child. But this was not the reason why I kept sneaking glances at him. Those light up type of sneakers were Nayelis’ favorite.  I remember going to Finish Line at the mall with her. Daddy and Nandy were there too. It was time to get the kid’s new sneakers as they were outgrowing theirs. Well, Daddy was looking at some Jordans for Nayelis, and asked her if she liked them. She looked at them and said, “No, these”, as she picked up a pair of the most colorful Sketchers that lit up when you walked on them. Pink, Purple, Turquoise and glitter all over the sneakers. She was 2 years old, but she knew what she wanted.

Tuesday, September 9, 2014

Memory of you

Memories of you are on constant replay within me. It’s impossible to forget a being that grew within me, that was born of me, an extension of who I am. You made me whole, and the minute you stopped breathing, a part of me  escaped with you.
I will never be the same person I once was because I am no longer whole. But I can honestly say that because of you, I am a better person. You taught me so much in the little time I was privileged to have you.
I remember your tiny little hands on my face.
You looking into my eyes, as though your eyes were speaking to me. Your little voice telling me not to be sad because everything was going to be ok. I remember that single tear escaping from my eye as I hugged you with every being in me. Here you were comforting me, as I was trying to comfort you. I always said you were special and unique. An old soul living in that little body of yours. You were a gift given to me, and though you were taken right back, you will always be a gift I will treasure forever.

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. 

Monday, August 20, 2012

108 Days Later ...

If you follow  Team Mona Rabiosa   on Facebook - you are pretty much aware of all that has happened since I last wrote a post here. 

Nayelis lost her batter to AML M7, and earned her angel wings on 5/5/2012. 

I haven't sat down to fully write for many reasons. 

(Though I still provide updates here and there on her Facebook page, there's a lot more going on inside of me than what I have shared. Even though it's true what they say, fewer words paint a bigger picture.)

But I think one of the main reasons I haven't been able to fully write, as much as I've tried and as much as I've wanted to, is because I am afraid. Afraid of what emotions would result if I were to free what imprisons my inner being since the last minute I was able to hold her in my arms. 
And well today, a friend asked me, "How do you breathe?" I immediately knew what she was referring to. It got me thinking because it's something I battle on a daily basis. The art of breathing after losing my baby girl. And this was my reply: 
That's a very good question that I continue to ask myself daily. Trust me, it's not easy at all. Sometimes I feel like I have no air and I commence to hyperventilate.  Everyday is a new struggle, and I miss her even more each day that passes by. I try to find comfort in the memories that I built with her these past three years, the three years that I had her.  
I have been experiencing some Highs & Lows these past couple of weeks. When she first passed, I was calm (don't get me wrong, I was hurting and missing her, but I had this tranquility over me because I felt/knew that I did anything and everything possible in my power to fight for her). And that is why I continue to do what I do. Because I promised her that I wouldn't stop fighting. That I would continue so that other families wouldn't have to go through what we went through.  
When I feel like I can't no more, (and it's a daily feeling) I think of Nandy. I think of how much he needs me right now. I think of how he must have felt these past three years when everything was going on, and I was at Sloan with Nayelis two times, or the overnights inpatient stays at Yale, being away from his mom, who he needed as much as his sister did. I think of him, and how he is also going through the loss as much as we the parents are. And if we that are older, and know about the life/death process, are having a difficult time accepting this all, well imagine what is going through the mind of a 6 year old boy who know longer has his sister with him. The one he was closest to. That he shared his room, his toys, and everything with. I think of him, and somehow I find the strength to force myself to breathe.
 Losing one's child has to be the most heartbreaking experience a parent would ever endure. We are not supposed to outlive our children, especially when they have their whole lives still to live. Every day that passes is a new day filled with pain. Having to wear these shoes I wear, involuntarily, is the worst.

And yes, sometimes it's better not to say anything at all, but just be there for the person. 
At times family and/or friends are not sure of what to say or if to say anything at all. And they don't realize that when they say, "Oh I don't even know what to say", well it just makes things a bit awkward  and that's the last thing you would want. 

Well, I should be getting some sleep. Or at least try. 
But before I go I wanted to remind you that September is Childhood Cancer Awareness Month. Spread the word. Consider donating towards childhood cancer research. 

Good Night <3