Faith, Strength & Love: 108 Days Later ...

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 20, 2012

108 Days Later ...

If you follow Team Mona Rabiosa on Facebook - you are pretty much aware of all that has happened since I last wrote a post here.

Nayelis lost her batter to AML M7, and earned her angel wings on 5/5/2012.

I haven't sat down to fully write for many reasons.

(Though I still provide updates here and there on her Facebook page, there's a lot more going on inside of me than what I have shared. Even though it's true what they say, fewer words paint a bigger picture.)

But I think one of the main reasons I haven't been able to fully write, as much as I've tried and as much as I've wanted to, is because I am afraid. Afraid of what emotions would result if I were to free what imprisons my inner being since the last minute I was able to hold her in my arms.

And well today, a friend asked me, "How do you breathe?" I immediately knew what she was referring to. It got me thinking because it's something I battle on a daily basis. The art of breathing after losing my baby girl. And this was my reply:

That's a very good question that I continue to ask myself daily. Trust me, it's not easy at all. Sometimes I feel like I have no air and I commence to hyperventilate. Everyday is a new struggle, and I miss her even more each day that passes by. I try to find comfort in the memories that I built with her these past three years, the three years that I had her.

I have been experiencing some Highs & Lows these past couple of weeks. When she first passed, I was calm (don't get me wrong, I was hurting and missing her, but I had this tranquility over me because I felt/knew that I did anything and everything possible in my power to fight for her). And that is why I continue to do what I do. Because I promised her that I wouldn't stop fighting. That I would continue so that other families wouldn't have to go through what we went through.

When I feel like I can't no more, (and it's a daily feeling) I think of Nandy. I think of how much he needs me right now. I think of how he must have felt these past three years when everything was going on, and I was at Sloan with Nayelis two times, or the overnights inpatient stays at Yale, being away from his mom, who he needed as much as his sister did. I think of him, and how he is also going through the loss as much as we the parents are. And if we that are older, and know about the life/death process, are having a difficult time accepting this all, well imagine what is going through the mind of a 6 year old boy who know longer has his sister with him. The one he was closest to. That he shared his room, his toys, and everything with. I think of him, and somehow I find the strength to force myself to breathe.

Losing one's child has to be the most heartbreaking experience a parent would ever endure. We are not supposed to outlive our children, especially when they have their whole lives still to live. Every day that passes is a new day filled with pain. Having to wear these shoes I wear, involuntarily, is the worst.

And yes, sometimes it's better not to say anything at all, but just be there for the person.

At times family and/or friends are not sure of what to say or if to say anything at all. And they don't realize that when they say, "Oh I don't even know what to say", well it just makes things a bit awkward and that's the last thing you would want.

Well, I should be getting some sleep. Or at least try.

But before I go I wanted to remind you that September is Childhood Cancer Awareness Month. Spread the word. Consider donating towards childhood cancer research.

http://www.stbaldricks.org/participants/YvetteVelez