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, August 21, 2011

Things Happen for a Reason ... right?

I am writing from HOME!

Nayelis was discharged on Saturday afternoon, 8/20. That morning the doctors rounded, with me included (which is a nice thing because I feel included in the process & able to give feedback), and so far the cultures were all negative. She had been a whole day being afebrile (no fever) and was perking up. Her vitals were good, and she was eating, walking & playing. The CT scan of the chest she had done the day before showed no infections of anything of concern. What came out of the doctor's mouth next was music to my hears. "I see no reason why Nayelis can't go home. I mean she's not neutropenic, and everything is coming back negative." The only thing, as a preventive act, was to give her a dose of an antibiotic that lasted 36 hours in her system. Just in case they said.
So they gave her the meds, while I gathered our belongings. It felt so good to be able to go home. Usually our stays range from 10-18 days. So being there for 3 days seemed like nothing. So home we went!

When we arrived at home, there was a package at the door. Nandy picked it up and said, "Mommy, Look. Another mail for Beba." (Beba is a nick name we have for Nayelis, as well as Mona.) I took the package and saw that it wasn't for her, but for him! So I told him that it wasn't for Nayelis, but that it said it was for Nandiel. His expression was priceless. He was so excited to have received mail and took the envelope from my hands...ran up the stairs and threw himself on the floor to open it.



Yes! It was a SUPERHERO CAPE! Thank you to Kristi Rotarius for sponsoring his cape, as well as Barbara from www.kissthetoadcreations.com !

He was so excited because he now had a cape like Nayelis did! Seeing him so happy is priceless. A mommy's wish is to see their babies smile and enjoy themselves at all times. A child's innocence should be guarded at all time. A child should not be worrying about what's going to happen next & the unknown... and that is something I feel Nandy struggles with. I can't leave his sight without him questioning where I am going, if he can come with me, if I am returning. I mention that I have an appointment at the doctor and the first thing he does is ask if I am coming back or do I have to stay. And his expressions change depending on my answer. This is what I am always open with him. I know he is only 5 years old, but he has had to grow up faster than he should. I make sure to explain to him, as best as I can for a 5 year old to understand, what is going on with his sister. I bring him with me to appointments when I know it's not going to be a long day. So that he knows where I am at, and what is going on with his sister.  I have faith that as he grows he will understand more what it is we are experiencing.

Today, Sunday 8/21, was an awesome day ... thanks to Colin's Crew ( http://www.facebook.com/pages/Colins-Crew/105924212775801 ) a bunch of the oncology families were able to enjoy a good game of baseball.  We watching the New Britain Rock Cats play the New Hampshire Fisher Cats (minor leagues). The kids had an amazing time.



And to the end the evening -
I was getting both Nandy & Nayelis ready for bed. Nandy's 1st day of school is tomorrow and I will be able to be there to walk him up the steps of his big boy school!!! No words can express how ecstatic I am about it. Well I bathe both kids, laid them down, and read a story. Before leaving their room, I told Nandy that we had to pray, or talk to God like he calls it. So I said a prayer and when I was done I told Nandy that it was his turn. So Nandy goes:
Dear God, Please take care of Beba. Because I don't want her to go to the hospital and I want her here with me. Oh and tell her that she needs to listen. Amen. 
No lies. That's exactly what he said. As he was saying it my eyes watered. And then people say that kids that young don't really know what's going on or get affected by the hard situations. Wake up and smell the coffee is what I tell them. Kids are like sponges and they absorb everything.  EVERYTHING.
And with that I will say Good Night and God Bless ... Oh and Enjoy one last picture:
                                                                   My SuperHeroes <3
Posted by at

1 comment:

  1. SherriAugust 22, 2011 at 7:46 AM

    LOVE the last picture, that is priceless. I'm so glad you both got to come home and be with Nandy for his first day of "big boy" school, that is fantastic. God gave you all a break for once knowing that he needed his mama and sister there to see a big moment in his life this time. Wishing you and the family the best always.

    ReplyDelete

Subscribe to: Post Comments (Atom)