Faith, Strength & Love
Nayelis' battle against Leukemia (AML) has changed our lives in so many ways. But we are in this together with faith, strength, and most of all LOVE! Nayelis is a true soldier. Through out her journey, she always puts up a fight with a smile on her face! Please keep Nayelis & family in your thoughts and prayers as she continues to fight this battle.
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.
Tuesday, May 5, 2015
Nayelis
Friday, September 12, 2014
I remember ...
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
Tuesday, September 9, 2014
Memory of 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...
Monday, August 20, 2012
108 Days Later ...
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.