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.

Thursday, August 25, 2011

Busy, but Blessed ...

It's been one long & busy week, but sure enough we have been blessed. 
Blessed with another day, blessed with friends and family, blessed with sunshine and laughter. 
Blessed with you all who continue to support us in every way imaginable! And we would like to say: 
Nayelis - She's doing good! Eating, Talking, Running and Playing ... Without a worry in the world. Just    the way we like to see her. She's been at home since Saturday with NO fevers! *Yipee* She hasn't had an appointment at Yale because we were waiting for Sloan Kettering to call with appointment dates to restart the transplant process. 
Side note - (this is what is going through my head right now) Though she's looking good and doing good, I can't help but worry. Especially because we haven't had a clinic appointment this week. It seems not normal because our normal became being in the clinic on a weekly basis! ((sighs)) Even though it's been over two years that we have been traveling down this road, it doesn't get any easier. When she's sick we worry, and when she's doing good we worry still! All because this beast of a disease just creeps into our live  out of nowhere trying to take control of everything: our lives, our normalcy, our baby. And that's the thing with AML- it comes fast without giving a hint that it's there. And when you suspect something, it's already invading and trying to control the body. But no more. You will be stopped. You ARE stopped.
Sorry about that. My mind is over working itself over here.
Back to Nayelis and her appointments.
So tomorrow (Friday 8/26) we will be traveling with Nayelis to Sloan Kettering to meet with the radiation oncologist and have the simulation done. What is a simulation you ask? Well:

A radiation oncologist develops a patient’s treatment plan through a process called treatment planning, which begins with simulation.
During simulation, detailed imaging scans show the location of a patient’s tumor and the normal areas around it. These scans are usually computed tomography (CT) scans, but they can also include magnetic resonance imaging (MRI), positron emission tomography (PET), and ultrasoundscans.
Computed Tomography Scanner
Computed Tomography Scanner		CT scans are often used in treatment planning for radiation therapy. During CT scanning, pictures of the inside of the body are created by a computer linked to an x-ray machine.
During simulation and daily treatments, it is necessary to ensure that the patient will be in exactly the same position every day relative to the machine delivering the treatment or doing the imaging. Body molds, head masks, or other devices may be constructed for an individual patient to make it easier for a patient to stay still. Temporary skin marks and even tattoos are used to help with precise patient positioning.
Radiation Therapy Head Mask
Radiation Therapy Head Mask		Patients getting radiation to the head may need a mask. The mask helps keep the head from moving so that the patient is in the exact same position for each treatment.
 At the time of Nayelis' first transplant, she did not receive radiation due to her age. With this transplant, she will receive total body radiation (tbi). (Nayelis had to have the radiation therapy head mast last year when she was given radiation for the chloroma (tumor) that was found in her nasal cavity. )

Yes. I know how you are feeling right now. OVERWHELMED. No? Well. That's how I am feeling.


Nayelis will then go to Yale on Monday (8/29) for an appointment with a cardiologist. She will have an echo and an ekg done as well. Then on Tuesday (8/30), she will be seen at Sloan Kettering, where her medi-port will be removed. (In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".) This is a mediport: 
On Wednesday (8/31), she will be admitted to Sloan Kettering to start the transplant process, which will include high dosage chemo and the radiation. This I will not write about right now because I don't want to think about it at this moment. Just thinking of everything that her body will have to endure again just frustrates and infuriates me! She's been looking so happy and gaining weight these past few weeks. Full of Life is how I like to describe her! 


You don’t get very far in life without having to be brave an awful lot. Because we all have our frightening moments and difficult trials and we don’t have much of a choice but to get through ‘em, and it takes a lot of bravery to do that. The most important thing about bravery is this — It’s not about not being scared — it’s about being scared and doing it anyway — that’s bravery.
Ysabella Brave
                                                   But she's strong, brave, and a soldier. 


For those of you who expressed interest in Nandy's 1st day of school: 
This was leaving the house! 
Nandy in front of his school

Nandy doing homework! 

He's been doing good this week. Having a bit of trouble adjusting to a full day of school, but I know with time he will be fine! I can't believe he's already 5 and in Kindergarten! 
He will be Class of 2024 (high school) & Class of 2024 (college). 
How exciting! 
=0) 

Ok. Just last minute things, and then I promise to go to bed! LOL 
1. There are a few fundraisers going on right now. Please refer to the prior post for information. 
2. The PayPal button is officially working and linked to Nayelis' acct, in case you were interested in     making a donation. By the way, THANK YOU to the three individuals who have been generous and donated through PayPal <3 
3. Team Mona Rabiosa has bracelets for sale! I am working on figuring out what's the best way to sell/exchange them. Will inform you as soon as I can on that. 

With that being said, Have a good night & God Bless! 

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