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.

Monday, August 15, 2011

It's getting closer. . .

Just thinking that time is ticking and the hours are passing.
One day closer to what we pray will be the answer to our prayers.

Last Thursday, 8/11/11, we met with Nayelis' transplant doctor at Memorial Sloan Kettering Cancer Center in NY. (This is where she had her 1st transplant on 10/09) We went over Nayelis' history with the Acute Myeloid Leukemia (AML M7) since she was diagnosed on June 17, 2009. She explained to us that it would be best for Nayelis to have this transplant sooner rather than later due to the aggressiveness that M7 takes and Nayelis having no evidence of Leukemia at this point.

Today we were at Yale. It was just a check up appointment. Vitals were done. Nayelis' weight and height are nothing to worry about right now. She's actually gaining weight! Must be all of the Chef Boyardee's Spaghetti&Meatballs and the fwench fwies and chicken from McD's!
Complete Blood Count (CBC's) also  look good. Talked to her oncologist, and everything seems to be following through.

So, a date has been given.  She will have a bone marrow aspirate and lumbar puncture done at Yale New Haven Hospital on 8/17 just to make sure nothing has changed. On the 18th, we will have to go to MSKCC because Nayelis will have to have a simulation done. (This transplant will also include total body radiation just to make sure any hidden leukemic cells will be taken care of.) On the 23rd, she will go to MSKCC to have her present port removed, and a temporary triple lumen line placed. Nayelis will be admitted to MSKCC on 8/25/2011.

Even as I type, I am feeling every single type of emotion that I can think of. But, I have to stay positive and keep the faith that all will go like God wants it to. Been running around trying to get everything ready for Nayelis & I, and our stay. As well, as leave everything ready for Nandy for school. Nandy starts kindergarten on 8/29, so Nayelis & I will not be here for his 1st day of BIG BOY school.
It's not easy what we go through. 
Not for Nayelis, not for Nandy. 
As a parent, I find it so hard trying to split myself in half and be there for both of them at the same time. She needs me, but so does he. I see how his expressions & behavior changes from time to time, especially when he sees that she receives attention and/or gifts from everyone. And for this reason, I try to make it up to him in every other way like our "mommy & Nandy dates" where only he and I go out and spend time together. I pray that when he gets older he understands everything I've done, and I do, is for him & her. 

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.
- Christopher Reeve

                                                 And these two here are my HEROES!
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2 comments:

  1. SherriAugust 16, 2011 at 8:14 AM

    So this means that you found a donor? And she'll get the transplant on the 25th?

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  2. Team Mona RabiosaAugust 18, 2011 at 9:30 PM

    Sherri- They found matching cord blood. Two different units that are 5/6 matched. She was scheduled to get admitted to Sloan on the 25th, but she's been having fevers for the last two days. So its' going to be postponed a week.

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