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, October 25, 2011

Counts, Medicines, Surgery ...

Today is October 25, 2011 and it's DAY + 46.

Almost three weeks since I last updated.

For the most part, if you have been following Team Mona Rabiosa on Facebook, you know that all has been going well. Her counts have been coming in nicely on their own and keeping stable. This is a good thing. She has not needed a blood transfusion in almost two weeks!

She developed a small rash, or "redness" all over and she was immediately started on antibiotics and steroids. And though it was slowly, this rash has gone away! Not sure yet if it was a sign of GVHD (Graft Versus Host Disease).

  Graft-versus-host disease is a frequent complication of allogeneic BMTs. In GVHD, the donor's bone marrow attacks the patient's organs and tissues, impairing their ability to function, and increasing the patient's susceptibility to infection. More information on GVHD can  be found at : http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html#anchor412913
Last week, Nayelis also had an MRI of her head and bone marrow aspirate done.
The results of both came back negative! Everything is looking good. THe MRI also showed no sign of the "mass" that was there before. God is so good!

This week, rounding with doctors, has resulted in most of her IV medications being changed to oral medications! Which is a good sign. This mean that we are so close to being discharged. I asked, because I just had to, and they said that hopefully for this weekend if not Monday she will be able to go home. As long as everything continues as it is presently. Please continue your prayers! I think that she needs to be out of here as much as I do for our mental health's sake. Lately, all she wants to do is stay in bed and sleep. Her appetite is starting to slow down again. She tells me that she wants to eat her spaghetti & meatballs at home with her brother. =(
Fortunately, the doctors are allowing her to leave the room and take strides in the hall in the evenings after visiting hours, as long as she has her mask on and is gowned up. And of course, you don't have to tell her that twice! The only bad thing is that she wakes up the next morning saying that she wants to go for a walk. When we tell her that she can't and has to wait until the night time, the fight in her starts. She becomes resistant and doesn't want to deal with anyone.
I know as much as it is hard for me to be confined to these four walls, it's even harder for her. Sometimes I have to lock myself in the bathroom and let the tears roll down so that she won't see me. She senses when I am down and is quick to ask if I am ok. Today a friend of mine posted a youtube link to my wall. It is Martina McBride's "I'm gonna Love you through it."
http://www.youtube.com/watch?v=iey3eFrDMXA&feature=youtube_gdata_player
She said she head the song and thought about Nayelis and I. I've heard this song before and it's one that I like and can relate to. Especially the following lyrics:


‎"When you’re weak, I’ll be strongWhen you let go, I’ll hold onWhen you need to cry, I swear that I’ll be there to dry your eyesWhen you feel lost and scared to death,Like you can’t take one more stepJust take my hand, together we can do itI’m gonna love you through it."
The crazy thing, and I was telling her, is that many times I feel like it's Nayelis helping me through this. She's giving me the strength when I feel weak and scared. She's my (s)hero. Everything that she has endured and yet she still manages to smile and keep going. <3

This Friday, the 28th, Nayelis is going to have a procedure/surgery. They are going to remove the temporary line she currently has, and they are going to place a port in. This will make things a lot easier for us when she is discharged. She's a busy three year old, and I would go nuts if she accidentally the temporary line out. I'm praying for a safe and quick procedure.

Here are some pictures of the last week or two:



















Now it's time for some nighty night!
God Bless you all! 
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