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, November 10, 2011

Halloween Discharge, Ronald McDonald House, Home

and two weeks later, Nayelis and I are back home!
Let me not get ahead of myself and backtrack a bit.

10/31/11 = Day +52
Halloween Day and we were still at Sloan Kettering waiting on the doctors to decide if they were going to discharge her or not. There was some questions about her blood pressure being a bit high the previous night.  As we waited for the doctors to come and round with us, I dressed Nayelis up in her Halloween costume! It was her choice: Olivia the Pig from Nick Jr!


She was anxiously waiting for the doctors to say she can go home. She had her stroller in the room, had her coat on the bed, and our belongings were all packed up. She was READY!
The doctors came by and everything was looking good. I was trying to read their expressions as they talked amongst themselves. I was praying that they didn't change their minds. They decided they would increase her blood pressure medicine a bit in order to help with the high blood pressures she had the day before. And it was a go! We were going to be able to get discharged to the Ronald McDonald House!
We just had to wait for discharge papers, and for her nurses to review everything with me, including the many medications she's on.

So as I was putting Nayelis' coat on, I told her we were leaving. She asked if to the mcdonald house and I said yes. But when we arrived at the house, Nayelis wanted to leave because she wanted the McDonald House! I'm thinking she probably thought we were going to the actual McDonalds! She kept asking for the nuggets and fries, which is her absolute favorite after the spaghetti and meatballs that is.














Our stay at the Ronald McDonald House was rather short this time around though. We were there for a little over a week, and not because the doctors were ready to send her home. (After the first transplant, she was discharged to the Ronald McDonald House for 2 months before coming home.) But a lot was going on that needed to be taken care of. For one thing, Nandy has been having a very rough time in school for the last two - three weeks. It was to the point where the guidance counselor was calling me daily to let me know what was happening, and we were even considering taking him out of school for the time that we had to stay in NY and allow him to stay with Nayelis and I there. He would have been able to return to school as soon as we were back in CT. Nandy's behavior in school was escalating and he was expressing anger & frustration. The school staff understands the situation our family is experiencing, but they do not know what other ways to help him. I'm currently seeking services for him ... to teach him how to talk about his feelings and cope with them. There are other things going on at this time in regards to my employment. They have been phenomenal since Day 1 in 2009. But right now, my job is on the line and I feel like I am stuck against a wall. Been thinking and praying about it all. Decisions need to be made. One thing that I know for sure is that my children's health and my sanity are my primary focus right now. And at the same time, I need to keep in mind that my job security is important as well because it's my children's future. ((Sighs))

So I sat down and had a serious conversation with her doctors at Sloan. And poured it all out. They are so good and working with us. Because Nayelis has been doing so well, they allowed her to return home early so that we can work through this all as a family. Nayelis still needs to be seen at Sloan twice a week at this time, so twice a week we will have to drive down to NYC. And little by little, it will be worked out where I will be able to bring her back and forth between Sloan and Yale.

We returned home on Tuesday, 11/8/11, Day +60. 

Nandiel is so happy to have us back home, but is still adjusting. He worries that I will leave again, and not be home. I am doing the best I can to assure him that I am home and day by day we will know where we stand in terms of going back and forth.
Nayelis is happy to be home. She runs back and forth through the rooms, picking up belongings that she hasn't seen in a while. She is all smiles and giggles. Her appetite is increasing as well.
Being home feel good, yet at the same time is so overwhelming for me.
The first night was very hard. I walked in here and felt so out of place. My head was spinning. It's crazy. I was home, but I didn't feel like it was my home. Adjusting to being home, and not in the hospital can be so overbearing and draining at the same time. I'm constantly checking Nayelis to make sure she is ok. I am trying to organize myself back to where I had left off in terms of our home. I'm trying to figure out what's going to happen tomorrow, and the next. But I think that's my problem. I am trying to do so much at one time. I need to slow down, and live for today ... enjoy today... enjoy my time at home with my family. Need to understand that tomorrow is another day, and I can pick up from where I left off.

I am truly thankful for the many guardian angels that God has placed in my path during these tough times. It has helped me realize that God is in charge, and he is taking care of me as I take care of our daughter.