Hello -
Mommy here. It's 2:45am and I am still up. My sleep schedule is all screwed up.
Thankfully, Nayelis and her brother are sleeping! They had a pretty good day today ... and that's what we've been trying to do. Enjoy as much time as we have together for soon our family will be separated for a bit as Nayelis will be admitted to Memorial Sloan Kettering Cancer Center in NY. More information on that will soon follow.
Let me know what you think of this blog.
I figure I would start the blog, even though I still will keep updating the FB page. WIth the blog I can write longer updates, and continue giving short updates on FB.
There are still somethings I am working on ... For instance the Donate button. I still have to link Nayelis' account to it. So that's out of service right now.
Let me try to get some rest.
Have a blessed night!
Nayelis' battle against Leukemia (AML) has changed our lives in so many ways. But we are in this together with faith, strength, and most of all LOVE! Nayelis is a true soldier. Through out her journey, she always puts up a fight with a smile on her face! Please keep Nayelis & family in your thoughts and prayers as she continues to fight this battle.
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.
i think it is a wonderful idea, my thoughts and prayers go out to all of you ~
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