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.

Tuesday, September 13, 2011

Day +1 through +4 ...

We have been here at Sloan Kettering for almost two weeks already, yet it feels like forever :/

Saturday 9/10: Day +1 
 It was kind of hard sleeping the night before because I was constantly checking on Nayelis to make sure everything was ok. And everything was OK overtime I would wake up. Nayelis woke up that morning in such a great mood! She opened her eyes, looked at me, and gave me the biggest smile ever! How comforting that was for me and her daddy. She brushed her teeth, and became excited at the sight of new diapers! lol


 It was as though she was trying to tell us that everything is going to be OK!
Vitals were showing the her blood pressures were not as high as they were at the time during transplant. Her energy that morning was wonderful. She monkey'ed around with her daddy for a bit, and it was as though nothing bothered her. What an awesome feeling, if only she were at home feeling this way ... one can only hope ... soon.
My very good friend and sorority sister, Rachel, came up to visit and to stay with Nayelis for a few hours so that I was able to breathe outside of these four walls (that every day that passes feels like its sucking the life out of me ... now I know how Nayelis feels). I am very appreciative to her for this! And though it felt good to be outside and breathe fresh air, I couldn't help but to think of Nayelis every few minutes. I know everyone says that one needs to be leave the room and breathe at times and not feel guilty about it. But it's hard not to feel guilty. It's something that I'm still learning how to deal with it.

Sunday 9/11 : Day +2 
Remembering all the lives lost...
Counts for today: 
WBC: 0.2
HgB: 9.4
Platelets: 36
ANC: 0
It started as a quiet day for Nayelis & I. She slept in as she cuddled with me.
Blood pressures were getting better, but her tushie was getting sore from the diarrhea these medicines were causing :( Because it was getting uncomfortable to have her diaper changed, the doctors started giving her very small dosages of pain medicine right before diaper changes.
Later that afternoon, we had surprise visitors!
Omar came back up to drop some important mail I needed, but he also brought with him my sister, Lourdes, and nephew, Papito! I was so excited to see them, but Nayelis' excitement beat mine! LOL


Nayelis was also excited because the nurses brought in her AWESOME and CREATIVE count's calendar full of MONKEYS!!! (It's where they keep track of her counts for me)


And before we knew it, it was time for our visitors to go home. As much as it was awesome for them to come up, it was also hard for Nayelis to see them leave. She became upset, and didn't want to look at them. She didn't want to say bye, not even to her daddy! This has to be one of the hardest things for her at this age. Not being able to interact with her loved ones as she would like to, not being able to roam the halls like she's used to, not being able to be free to do what she pleases. How do you explain to an almost 3 year old that they can't do the things kids her age do? Someone please help me because I don't know.
You see, during her 1st transplant, it might have been easier in some ways because she was still unable to express herself or know what she was missing outside of the crib.
I managed to calm her down, and she was then good to go. We became occupied with the many things stored in this room for her.

Monday 9/12: Day +3
Counts for today: 
WBC: 0.1
HgB: 9.0
Platelets: 27
ANC: 0
So her counts are starting to drop. As expected. This is where we have to be careful with Nayelis because it's where her immune system is ghost. So everyone coming to the room has to gown up with a mask and gloves. Everything is done to keep her protected! 
Blood pressures are stable, while the tushie is not :( 
Traumatizing for Nayelis overtime she has to have her diaper changed. Doctors talked about putting up a possible PCA on her pole. (It's a small pump on her pole that will administer a small dose of morphine in to her line by the click of a button. 
She woke up not in the best of moods. She kept saying she was tired, which is normal for everything that is going through. I wasn't' able to get her out of bed, but thankfully, Occupational Therapy came by first and successfully got Nayelis playing on the mat! She did well, and OT was impressed with Nayelis. =0) 
A page came into the room to inform me that a package was waiting for us in the main lobby of the floor. I stepped out to get it and it was from one of the most influential professors' I came across during my time at UConn! And to this day we stay in touch! Nayelis was excited to see mail! 




Laura, from OT, was done, but Nayelis and I stayed on the mat for a bit. Nayelis played until she tired herself out. She wanted to get into bed, and that we did. Until the physical therapist came by and was able to get Nayelis out of bed again. Only this time, Nayelis thought she was going to be able to leave the room, and when we told her that it was not possible, she took the baby carriage she has here and started slamming it against the door. She was very upset and frustrated. I picked her up and calmed her down. :( She was not a happy camper. She's not used to not being able to walk around when she wants to. These nurses are up for a ride with Nayelis because she is not making anything easy for them. And who can blame her?! No one! She's been 85% of her almost three years being in a hospital, being poked, through scans, and dressing changes... being held down and confined to four walls. Not your average day things for your average three year old. But then I remember that Nayelis is not your average child! =-)

Tuesday 9/13: Day +4
Counts for todaY: 
WBC: 0
HgB: 8.5
Platelets: 5 
ANC: 0

So because her platelets were so low, she received a bag of platelets really early in the morning. It was so early that Nayelis and I slept through it without even realizing it! She woke up, and she still has no appetite. All she wanted to do was stay in bed. Her tushie was still bothering her do to passing of stools here and there. Music therapy came by and Nayelis was excited at first. Ten minutes later she stopped playing her instruments, turned her face, and her whole facial expression changed. Her eyes were watery. I asked her what was wrong, and she said she was tired and wanted to go night night. She then waved to the musicians bye so they could leave her room! The nurse came around and said that she was able to unhook Nayelis from her tubies so that I could bathe her real quick since they had to change her lines and dressings. Nayelis enjoyed the time in the bathtub but then her mood was dampen when it came time for the dressing change. :( 
Never did I think a dressing change would break my heart like it did today. Two nurses and myself holding her down while she screamed for us to stop. To make it worse after the change was done, she goes "I'm sowwie". ='( She has nothing to be sorry about because if I were in her shoes I would be just as pissed off with everything that she has to endure
The nurse took new CBC's (complete blood counts) just to make sure that her platelets were still holding up, and they were, but her hemoglobin had dropped. That meant that she was going to need blood. When the bag of blood arrived, Nayelis was premedicated and as the blood was given, Nayelis slept. During her nap, another package arrived in her name!
Once she woke up, I showed her the package and she was so EXCITED!





Her expressions are PRICELESS!!! She loves to receive mail, so if you can and are interested, feel free to send her uplifting cards /messages! You can send them to :
MSKCC
C/O Nayelis Rivera
9th FL Room 915
1275 York Avenue
New York, New York 10065
You have to understand that any little thing helps when being trapped in these four walls. Especially for a child her age. 
Yet, being confined to these four walls doesn't mean that she has to stop being the social butterfly she is! Tonight she was on the laptop on SKYPE for over three hours talking. First to her daddy and Nandy, then to her Grandma in Puerto Rico, then to a family friend, and lastly to her favorite buddy from Yale: Dylan! 
She LOVES Dylan! Can't you tell? 

And now it's past midnight and I am still up. She just fell asleep a few minutes ago. She was waiting for me to jump into bed with her. So much goes through my mind being here. 
I think of how things were before her diagnosis of Leukemia and I think of the time after the diagnosis and of where we are at today. It's amazing how this most difficult journey that one experiences when we have a child with cancer can also be an eye opener. This journey has illuminated my strength in many ways, and also the "family & friends" who will stand by you, and those who become non existent! And then you have the individuals who step up to the plate to be that "family & friend" you need during this time. I will forever be grateful to those who have become a part of my family these past two years ... who have managed to win our hearts and affections by their acts of kindness and selfishlessness! 

and yet ... 
- even though at times I feel this darkness cover me, I hold my head high and my faith stronger...I would rather walk with God in the dark, than walk alone in the light...

Good night & God Bless! 
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