It's crunch time ... Recap of the last few days ...

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!

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

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

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! 

Ongoing Fundraisers for Nayelis

Hey Everyone! 

First and Foremost, THANK YOU all who have helping us in any and every way possible. Whether it's through prayers, positive vibes, words of encouragement, donations and any other way that I have forgotten. ITS ALL APPRECIATED! God Bless you All!!! 

We have been blessed with individuals being placed in our path that have offered to help us! 

Here are two fundraisers going on at the moment to help out with the medical & everyday expenses that we are confronted with Nayelis' fight against Leukemia. 

As many of you know, she will be getting admitted to Sloan Kettering next week, Wednesday 8/31, to start the transplant process. We will be staying in NY for indefinite amount of time. (First time we were there for almost 5 months.) This means that I will be out of work for all of this time because you know there is no way that I would be able to be away from Nayelis during this time. 

If you are interested in attending the ANC Benefit Dinner and Dance event, PLEASE know that tickets will not be sold after 9/6/11 - Villa Bianca wants a head count on that day. Please contact Sharyn at 

203-929-6024 or Sharygerry@snet.net with any questions. 

The following link is for (Nayelis) Miss Mona Rabiosa's Fundraiser:
https://scentedwicklesscandles.scentsy.us/Buy?partyId=49476915

Thanks to ScentedWicklessCandles.com by Reyhan - She is donating 100% of her commission to Mona Rabiosa (Nayelis) to help the family in anyway possible. She said, "It's the least I can do. It breaks my heart that any child has to go through this."

Also: 

Hey Football Fans!! Want to have some fun and help little Nayelis' family? Gerry created this ESPN Eliminator Challenge but instead of being free to play its $10 per person. $100 grand prize and all the rest goes to Nayelis' family for medical expenses! Inbox us for more info!! And PLEASE SHARE!!

 http://games.espn.go.com/eliminator-challenge/en/

Again, 

Thank you all for your help! 

Hugs=

Yvette, Nayelis & family 

PS- Please share this information with friends and family 

Things Happen for a Reason ... right?

I am writing from HOME!

Nayelis was discharged on Saturday afternoon, 8/20. That morning the doctors rounded, with me included (which is a nice thing because I feel included in the process & able to give feedback), and so far the cultures were all negative. She had been a whole day being afebrile (no fever) and was perking up. Her vitals were good, and she was eating, walking & playing. The CT scan of the chest she had done the day before showed no infections of anything of concern. What came out of the doctor's mouth next was music to my hears. "I see no reason why Nayelis can't go home. I mean she's not neutropenic, and everything is coming back negative." The only thing, as a preventive act, was to give her a dose of an antibiotic that lasted 36 hours in her system. Just in case they said.
So they gave her the meds, while I gathered our belongings. It felt so good to be able to go home. Usually our stays range from 10-18 days. So being there for 3 days seemed like nothing. So home we went!

When we arrived at home, there was a package at the door. Nandy picked it up and said, "Mommy, Look. Another mail for Beba." (Beba is a nick name we have for Nayelis, as well as Mona.) I took the package and saw that it wasn't for her, but for him! So I told him that it wasn't for Nayelis, but that it said it was for Nandiel. His expression was priceless. He was so excited to have received mail and took the envelope from my hands...ran up the stairs and threw himself on the floor to open it.

Yes! It was a SUPERHERO CAPE! Thank you to Kristi Rotarius for sponsoring his cape, as well as Barbara from www.kissthetoadcreations.com !

He was so excited because he now had a cape like Nayelis did! Seeing him so happy is priceless. A mommy's wish is to see their babies smile and enjoy themselves at all times. A child's innocence should be guarded at all time. A child should not be worrying about what's going to happen next & the unknown... and that is something I feel Nandy struggles with. I can't leave his sight without him questioning where I am going, if he can come with me, if I am returning. I mention that I have an appointment at the doctor and the first thing he does is ask if I am coming back or do I have to stay. And his expressions change depending on my answer. This is what I am always open with him. I know he is only 5 years old, but he has had to grow up faster than he should. I make sure to explain to him, as best as I can for a 5 year old to understand, what is going on with his sister. I bring him with me to appointments when I know it's not going to be a long day. So that he knows where I am at, and what is going on with his sister.  I have faith that as he grows he will understand more what it is we are experiencing.

Today, Sunday 8/21, was an awesome day ... thanks to Colin's Crew ( http://www.facebook.com/pages/Colins-Crew/105924212775801 ) a bunch of the oncology families were able to enjoy a good game of baseball.  We watching the New Britain Rock Cats play the New Hampshire Fisher Cats (minor leagues). The kids had an amazing time.

And to the end the evening -
I was getting both Nandy & Nayelis ready for bed. Nandy's 1st day of school is tomorrow and I will be able to be there to walk him up the steps of his big boy school!!! No words can express how ecstatic I am about it. Well I bathe both kids, laid them down, and read a story. Before leaving their room, I told Nandy that we had to pray, or talk to God like he calls it. So I said a prayer and when I was done I told Nandy that it was his turn. So Nandy goes:

Dear God, Please take care of Beba. Because I don't want her to go to the hospital and I want her here with me. Oh and tell her that she needs to listen. Amen. 

No lies. That's exactly what he said. As he was saying it my eyes watered. And then people say that kids that young don't really know what's going on or get affected by the hard situations. Wake up and smell the coffee is what I tell them. Kids are like sponges and they absorb everything.  EVERYTHING.
And with that I will say Good Night and God Bless ... Oh and Enjoy one last picture:

                                                                   My SuperHeroes <3

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.

It's getting closer. . .

Just thinking that time is ticking and the hours are passing.
One day closer to what we pray will be the answer to our prayers.

Last Thursday, 8/11/11, we met with Nayelis' transplant doctor at Memorial Sloan Kettering Cancer Center in NY. (This is where she had her 1st transplant on 10/09) We went over Nayelis' history with the Acute Myeloid Leukemia (AML M7) since she was diagnosed on June 17, 2009. She explained to us that it would be best for Nayelis to have this transplant sooner rather than later due to the aggressiveness that M7 takes and Nayelis having no evidence of Leukemia at this point.

Today we were at Yale. It was just a check up appointment. Vitals were done. Nayelis' weight and height are nothing to worry about right now. She's actually gaining weight! Must be all of the Chef Boyardee's Spaghetti&Meatballs and the fwench fwies and chicken from McD's!
Complete Blood Count (CBC's) also  look good. Talked to her oncologist, and everything seems to be following through.

So, a date has been given.  She will have a bone marrow aspirate and lumbar puncture done at Yale New Haven Hospital on 8/17 just to make sure nothing has changed. On the 18th, we will have to go to MSKCC because Nayelis will have to have a simulation done. (This transplant will also include total body radiation just to make sure any hidden leukemic cells will be taken care of.) On the 23rd, she will go to MSKCC to have her present port removed, and a temporary triple lumen line placed. Nayelis will be admitted to MSKCC on 8/25/2011.

Even as I type, I am feeling every single type of emotion that I can think of. But, I have to stay positive and keep the faith that all will go like God wants it to. Been running around trying to get everything ready for Nayelis & I, and our stay. As well, as leave everything ready for Nandy for school. Nandy starts kindergarten on 8/29, so Nayelis & I will not be here for his 1st day of BIG BOY school.

It's not easy what we go through. 

Not for Nayelis, not for Nandy. 

As a parent, I find it so hard trying to split myself in half and be there for both of them at the same time. She needs me, but so does he. I see how his expressions & behavior changes from time to time, especially when he sees that she receives attention and/or gifts from everyone. And for this reason, I try to make it up to him in every other way like our "mommy & Nandy dates" where only he and I go out and spend time together. I pray that when he gets older he understands everything I've done, and I do, is for him & her. 

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.
- Christopher Reeve

                                                 And these two here are my HEROES!

Testing this out ...

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!