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, September 21, 2011

Mumbo Jumbo ... what day is it? (Day +5 - Day +11)

It's been almost a week since my last update here.
And to be honest, I can't remember what happened on which day! It's all meshed in my head as I am losing track of the days. Being confined in four walls does that to you, but I was able to escape for a few days this weekend. It was meant to only be a day, and it ended up being almost three because I wasn't feeling well. And in no way I was trying to jeopardize Nayelis' health. As much as it was difficult for me to be so far away from her, I had to do it. For her good. Thank God that I had individuals that were willing to spend the night here with her.

These last few days Nayelis' counts have been the same. Still no WBC and an ANC of ZERO. She's had to have various platelets and red blood cells transfusions. And thankfully she hasn't had a negative reaction to the infusions.
She has been a bit more swollen though. The doctors are monitoring her input/output of fluids to make sure she is getting rid of the extra fluids. She's been given a medicine called Lasiks, and it's to help her have more wet diapers.

I wanted to thank everyone who supported in any way the ANC Benefit Dinner and Dance for Nayelis! It was this past Friday, and it was AWESOME. And though Nayelis was not able to attend physically, she was there in spirit. We also managed to Skype with her for a few minutes, and many were able to see her as she smiled and danced to the music that was playing in the back ground. There was a professional photographer at the event and as soon as she posts the pictures I will be sure to share them!

I also want to thank everyone who has sent cards and/or packages to Nayelis here at the hospital and to Nandiel at home. It means so much to me to know that they are thought of at all times. Seeing their faces light up at the sight of mail for them is priceless! <3















As you can tell from prior pictures, to new pictures - she is beyond swollen! =0(

It's beyond scary to see your child go through what Nayelis is going through. Especially if this is the 2nd time around. I find myself comparing how she is now and what she is experiencing to what happened during her 1st transplant. And though it may be helpful to know what signs to look for when things get complicated, it's also a tool to drive you crazy.
I'm sitting here typing as I watch her sleep. She's connected to so many lines of medications, yet she finds a way to comfort herself in the warmth of her monkey blanket. Watching her breathing going from normal to too fast and back to normal. Making sure it is a normal way of breathing.  Feeling like I'm going to lose it at times. Trying to hang on to the bit of patience that I still have, and the strength that keeps coming from an unknown place. Well, not so unknown ...

Counting down the days ...
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