So it's past 2am and I am still up.
Cleaning and writing while everyone else is sleeping. Yet I should be sleeping myself. I have to be up at 5am to be on the road by 6 am to make it to Sloan Kettering by 7:30am for Nayelis' surgery (port removal & placing of new line)
But I can't get myself to sleep. It's like I'm forcing myself to keep myself busy.
Like when a woman is pregnant, and towards the end of the pregnancy all she wants to do is clean the home. Well at least that's what I've experienced with my pregnancies.
I think it's that I know we are a day and a half away from being admitted to Sloan Kettering. SO in order not to stress it right now, I try to do everything and anything that will keep me from thinking of it. :/
On Friday August 26, 2011:
We headed up to Sloan Kettering to meet with the pediatric radiology oncologist and for the simulation process. It was a long day for Nayelis because she wasn't able to eat due to the anesthesia that had to be given to her. Nayelis preoccupied herself in the play room for quite a bit until we were to head downstairs for the simulation. We met the radiology oncologist and she was very nice and kid friendly. Nayelis took a liking to her right away. She reviewed with us what the procedure would be like, and talked about the effects of radiation. The anesthesia team then showed up and as I held Nayelis in my arms, the anesthesia was given. Slowly I felt Nayelis body become heavier and it was because the medicine had knocked her out. That is one of the worst feeling I've ever experienced. To have my baby go limp in my harms :( Omar and I had to then go out and wait for the procedure to be done. Thanks to God, everything went well and before we knew it, Nayelis was being wheeled back up to the recovery room!
We returned back home, and in a hurry to go to the grocery store. There was talk about a Hurricane Irene coming our way. And though many people didn't think it would actually come, I was not going to risk it. Better to be safe than sorry.
Saturday came, and the talk continued about the hurricane. It really was coming our way! It was like all we did was watch the News. The kids played and played, while mommy worried. I was not mentally prepared for this crazy weather! Had too much other stuff going on in my head. The evening came, and the rain started. Winds were howling. All of a sudden, we also had a tornado watch! Ay Ay Ay. I could not get myself to sleep right away, though everyone else in the house was sleeping. Somewhere between 5 am and 7 am, I fell asleep for an hour or two, but was awoken by the kids. No more tornado watch for us, and the hurricane was weakening. We lost electricity for a few hours, but we then gained it back. We were lucky because there are still individuals who have no electricity.
Today (or yesterday if you are technical about it) 8/29:
We had an appointment at Yale with a cardiologist. Nayelis also had to have an EKG and an ECHO done. Even though those are two of the easiest exams, it was hard with Nayelis. Nayelis does not like to be held down ... she doesn't like being messed with, especially if it's around her chest because she automatically thinks she's getting her port accessed. Yes. She's traumatized! Somehow we managed to get the exams done, though they were limited. Then met with the cardiologist. He reviewed the EKG and Echo. He explained that the muscle that pumps the blood is appearing a bit swollen. This may be due to all of the chemotherapy that she has received. He mentioned that they will be following up with her just to make sure this condition doesn't change.
How frustrating it is! We have to give our children these toxic medications because it's what will help clear the leukemia. Yet at the same time, there are all these risks and side effects that can damage other organs. These issues may show up immediately or years later. Bottom line is that the issues will be there sooner or later. ((sighs))
Well, today, because it's already Tuesday 8/30, we have to be at SLoan Kettering with Nayelis at 7:30am. She hasn't been able to eat since midnight. You already know what trouble this will be in the AM with her 'cause she won't be able to eat or drink anything but water. All this is because she will be given anesthesia for the procedure. Please keep her in your prayers. Tomorrow will be another long day. But we need to do what needs to be done. All for her!
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.
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