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.

Sunday, September 4, 2011

And so it has begun ...

Yes, it has all begun. We are already at Sloan Kettering getting prepared for the 2nd bone marrow transplant. Let me just recap a bit of what has been going on these past few days.

Thursday, September 1: Day -8
 We were all up at the crack of dawn. Nandy had to be in school at 7:15am and we had to be on the road by 8 to make it to Sloan by 10. (Mind you, I didn't even sleep a cinch the night before. I was up all night cleaning, packing, making a scrapbook for Nandy with pictures of things we  had done for the past month or two, as well as recording my voice in this book for him. Every time he turns the page, my voice will read the words on that page to him. And I kid you not I had to redo it a few times because I was tearing uncontrollably and I Didn't want him to hear it in my voice.)
I was already in tears when I had to wake up Nandy to get him ready. A few hours before, he had woken up and came to me to hug me and tell me that he doesn't want me to leave. He saw the suitcase on the bed and hugged me tighter. My heart was breaking. I managed to get him back to bed though. So when he woke up, and as I was dressing him I showed him what I made for him. When he turned the pages of the book, and heard my dedication to him,  he blushed and put a huge smile on his face! (Omar tells me that Nandy leaves to the other room and he then hears voice. Meaning Nandy is with the book.) We finished getting ready, and we were all heading out. I looked around the apartment trying to take it all in and knew that I had to just keep moving if not I would break down.

Once we were inside the truck, we made our way to Nandy's school. I walked him in like usual, and sat him down for breakfast. I didn't know how to hug him and keep walking. I felt like I was walking out on him. I helped him open his breakfast and told him to be a good boy. I reminded him that if he ever felt sad to just open the book and hear my voice. That I will always be with him in his heart, and he in mine. I hugged and kissed him quickly and had to run out before he could see the tears streaming down.
Went back to the truck, and we were on our way. I don't remember the car ride down to Sloan because I slept it through. My tiredness was kicking in. When I finally opened my eyes, we were on the FDR getting off the exit. We were just a few minutes away and my stomach was in knots already. We made our way to Sloan's 9th floor, which is were the Pediatric Day Hospital is at. And we sat and waited for what felt like forever. They were waiting to get her room ready. So we occupied time by playing games with her & she loved it when the music therapist came out to play with her!



Before we knew it we were being brought back to M9. The pediatric BMT floor. And the room was ready for Nayelis. But because there wasn't much that needed to be done with Nayelis, they allowed us to leave our belongings in the room, and take a walk before actually admitting her. We took advantage of this and took her to McDonald's up the street for some chicken nuggets! Her favorite, aside from Chef Boyardee's Spaghetti & Meatballs.
Did you know that McDonald delivers here in Manhattan?! Yes, it does! $10 minimum. LOL

Ok. So we returned and waited for the doctor. The Childlife specialist came by with some things in hand for Nayelis already, and told us they were cleaning up a kitchen set to put in her room for her. The more distractions for her the better! She's going to need them since she will be confined to this one room for who knows how long.



The doctor came and reviewed with me protocol for the treatment Nayelis will be receiving. This is what it looks like:
  • Thursday 9/1 (Day -8) : Admitted
  • Friday 9/2 (Day -7): Chemo starts
  • Saturday 9/3 (Day -6): Chemo
  • Sunday 9/4 (Day -5): Chemo ends
  • Monday 9/5 (Day -4): Day of Rest  .... Happy Labor Day
  • Tuesday 9/6 (Day -3): Radiation starts  ... 2x a day ... Happy Birthday Omar (Nayelis' dad) 
  • Wednesday 9/7 (Day -2): Radiation ... 2x a day
  • Thursday 9/8 (Day -1): Radiation ... 2x a day
Friday 9/2 : Day -7 
First day of chemo and she took it well. No side effects yet. She was still full of energy. We had our very 1st visitor as well! My sorority sister, Mari, came by and spent time with us.  We then played with her kitchen most of the day, as well as with the Leap Pad and coloring books. We also watched a lot of Yo Gabba Gabba!, which is her favorite.I think we both know the DVD by heart! lol Nayelis also became an artist for the day. Child Life was celebrating the artist Jackson Pollock, so they brought in paints and papers for Nayelis to paint. I took pictures of her playing. I am a big picture person. I like capturing every single moment.









 That day, I also received a call from Nandy! He was so excited because he earned 4 paw prints today!!! (In his school, they can earn up to 6 paw prints a day, and at the end of the month if you earn 75% of the paw prints, the school has a surprise for the kids.) He was so happy because he had a difficult day yesterday because of everything and only earned 2.
MOmmy told Nandy how proud she was of him!!! 
I asked him if he wanted to talk to Nayelis, and he said he didn't. :( So unusual of him. And I think I know why he didn't want to talk to her. It has to do with the fact that I am here with her, and away from him. My poor baby. He's had to grow up so quickly :( 


Saturday 9/3: Day -6


Today was day 2 of chemo. She took it like a champ. 
We SKYPE'd with Nandy and Daddy for a bit. She then played with Mommy! We played a bit with the kitchen. We also got down and dirty on the floor with Play Dough! :) 


Today we also had visitors! 
My close friend and sorority sister, Rachel, came by to spend some time with us! She also brought Nayelis some of her favorite snacks. Can you guess which? 
Hmmm... if you said Chef Boyardee's Spaghetti & Meatballs and Ruffles Sour cream and cheddar ridges, then you are RIGHT! Oh and let's not forget the Fruity Pebbles. Her reaction was priceless! 


And before we knew it, Daddy was knocking on the door. Nayelis heard the knock, saw who it was and squealed with joy, "DADDY"! He also came with snacks for her! 
And you already know, if Omar was here so was NANDY!!! He came to visit Mommy. 
Only thing is that he is not allowed on the floor. (Kids under the age of 12 are not allowed on the floor due to germs and keeping the patients as safe as they can) So Omar stood with Nayelis while Mommy spent time with Nandy!!! Rachel and I took him to a playground that is across the street from the hospital and he had a blast. It felt so good to see him and hear him talk & laugh. 






When it was time to say goodbye, I didn't know how to let go of him. :( 
He was upset because he wanted to see his sister and couldn't. 
He gave me his action figure that he had brought up with him so that I could give it to Nayelis. 
Mommy, I want you to give this to Beba. But it's still mine. She can play with it though. 
My heart broke and my tears came rolling down. I gave him a big squeeze and just like that he got on the elevator with Omar. And just like that I was walking back to Nayelis room Feeling like I was torn in two. I gave Nayelis the action figure Nandy left for her and told her it was from Nandy. This is what she did.
 She asked for him and I had to tell her that he went home already. :/
We played some more, and before we knew it we were both laying in her bed. She snuggled next to me and fell asleep.

Every day and night I ask God to provide me with the strength needed to overcome this all.
I have faith that Nayelis will do well with this process. I am not saying that it's not going to be difficult, but in the end everything will be fine.

Thank you for joining us in this journey. As well as for your thoughts and prayers. We need all the prayers we can get these next few weeks.

For those interested, you are able to order the Team Mona Rabiosa bracelets right from this page. There is a pay pal button to the left of the screen you are able to use. As soon as the money is received, I will mail you the bracelet.

Also, if anyone is interested in sending us mail, you can send it to:
MSKCC
c/o Nayelis Rivera
9th floor  rm 915
1275 York Avenue
New York, New York 10065


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