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 18, 2011

BMA & LP / CBC's / Admission for fevers ...

These last two days have been draining, not that these past two years have been different.

8/17: We arrived at Yale at 8:45am for a bone marrow aspirate and lumbar puncture with intrathecal chemo. (That also meant that Nayelis could not eat or drink past midnight the night before...so that made it that much harder.) She walked into clinic like the lil' diva she is. Greeting everyone and running the show =0) Vitals were taken.


 Everything looked good. We were brought into a room so that her port could be accessed. This is the worst part ever for her. As soon as she sees the aluminum tray with the dressing kit and tubies, she already knows and cries out to me, "NO Mommy!" My heart breaks every time every time I have to hold her down and she's screaming for me to help her.  Once the port was accessed, she was allowed to go to the play area as we waited for the procedure to be done. There she saw her very good friend, Dylan, whom she loves dearly!

 Once they were ready for her, we brought her in to the procedure room, and sedatives were being given. The medicine helps her relax, as well as help with the pain so she won't feel much but the pressure.

Nayelis did an amazing job! The procedure was down quickly and with no complications. Once the procedure was over, Nayelis fell sound asleep and all you heard was her snoring! As we waited for her to wake up, the drs came back to give me the update on her CBC's. So all her numbers looked good, but they informed me that her white blood cells showed a blast.
 In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs.
My heart dropped. I felt my head spinning. I was at a loss for words and all I could do was look at Nayelis, then look at the dr and shake my head no. Here I was, finally accepting that we were going into transplant in a couple of days and getting prepared for it, and I was given the news that there was a possibility that the leukemia was returning. My world was closing in on me. The dr tried to comfort me by saying that it might just be an immature cell due to the bone marrow still recovering. I didn't know what to think anymore. All I knew was there was no way I was going to accept it was coming back. Right there in the procedure room, as Nayelis slept, I dropped to my knees and prayed over my baby girl. I asked God to please put His Hands over her and take away all malignant cells that may be hiding in her body. I cried and I prayed, and I cried a bit more, and I prayed much more. We had to stay positive.
A few hours later Nayelis woke up asking for milk, and then she wanted to play. She was good to go, so they deaccessed her. We headed home to get ready for a photo shoot a friend was going to do at the beach with the kids!
Yet, Nayelis' had a lil' accident with her clothes, so we went home and ended up doing the shoot at home. Pictures were coming out awesome! Nayelis was posing and all, as so was her brother. After a while Nayelis said she was tired and wanted to sleep. I sat down with her as she laid across my chest and feel asleep, but a while later I felt the heat pouring out her body. "oh no" was all I could think. Took the temperature and she had a fever. Knowing what that meant, I prepared myself to head to Yale. ((Sighs)) At the ED, vitals were taken and once again she had to have her port accessed. Not a good thing. CBC's and cultures were taken, and because of her history and her AML, they decided she was going to be admitted. A parent is never prepared to hear those words as much as you know that is what the outcome my turnout. My stomach did a flip=flop and my eyes watered. Here I was in the ED with Nayelis who had a fever, and all I could think of was of Nandy asking me if I was coming back home. Because he didn't want me to stay in the hospital. Because he wanted me to sleep at home with him. =*0(

And here we are. Admitted to the Oncology Unit. She's been battling this fever all night/day/night long. She broke free of the fever earlier this afternoon, but it came back. She's been given Tylenol every four hours, and cultures have been taken. Nothing has yet to grow in the cultures, which is a good thing.

I also spoke to the drs who informed me that the results of the aspirate were back. Nayelis' bone marrow is in REMISSION! No more worries about that ONE blast that was found. Drs explained that it was a different cell, but the techs usually make calls about cells that they don't know. A huge weight was lifted when we were told that.  We were also informed that transplant is now being delayed about a week. So it will no longer be on 8/25. Waiting to hear back from Sloan for the appointments rescheduling.


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