Mumbo Jumbo ... what day is it? (Day +5 - Day +11)

It's been almost a week since my last update here.
And to be honest, I can't remember what happened on which day! It's all meshed in my head as I am losing track of the days. Being confined in four walls does that to you, but I was able to escape for a few days this weekend. It was meant to only be a day, and it ended up being almost three because I wasn't feeling well. And in no way I was trying to jeopardize Nayelis' health. As much as it was difficult for me to be so far away from her, I had to do it. For her good. Thank God that I had individuals that were willing to spend the night here with her.

These last few days Nayelis' counts have been the same. Still no WBC and an ANC of ZERO. She's had to have various platelets and red blood cells transfusions. And thankfully she hasn't had a negative reaction to the infusions.
She has been a bit more swollen though. The doctors are monitoring her input/output of fluids to make sure she is getting rid of the extra fluids. She's been given a medicine called Lasiks, and it's to help her have more wet diapers.

I wanted to thank everyone who supported in any way the ANC Benefit Dinner and Dance for Nayelis! It was this past Friday, and it was AWESOME. And though Nayelis was not able to attend physically, she was there in spirit. We also managed to Skype with her for a few minutes, and many were able to see her as she smiled and danced to the music that was playing in the back ground. There was a professional photographer at the event and as soon as she posts the pictures I will be sure to share them!

I also want to thank everyone who has sent cards and/or packages to Nayelis here at the hospital and to Nandiel at home. It means so much to me to know that they are thought of at all times. Seeing their faces light up at the sight of mail for them is priceless! <3

As you can tell from prior pictures, to new pictures - she is beyond swollen! =0(

It's beyond scary to see your child go through what Nayelis is going through. Especially if this is the 2nd time around. I find myself comparing how she is now and what she is experiencing to what happened during her 1st transplant. And though it may be helpful to know what signs to look for when things get complicated, it's also a tool to drive you crazy.
I'm sitting here typing as I watch her sleep. She's connected to so many lines of medications, yet she finds a way to comfort herself in the warmth of her monkey blanket. Watching her breathing going from normal to too fast and back to normal. Making sure it is a normal way of breathing.  Feeling like I'm going to lose it at times. Trying to hang on to the bit of patience that I still have, and the strength that keeps coming from an unknown place. Well, not so unknown ...

Counting down the days ...

Day +1 through +4 ...

We have been here at Sloan Kettering for almost two weeks already, yet it feels like forever :/

Saturday 9/10: Day +1 
 It was kind of hard sleeping the night before because I was constantly checking on Nayelis to make sure everything was ok. And everything was OK overtime I would wake up. Nayelis woke up that morning in such a great mood! She opened her eyes, looked at me, and gave me the biggest smile ever! How comforting that was for me and her daddy. She brushed her teeth, and became excited at the sight of new diapers! lol

 It was as though she was trying to tell us that everything is going to be OK!
Vitals were showing the her blood pressures were not as high as they were at the time during transplant. Her energy that morning was wonderful. She monkey'ed around with her daddy for a bit, and it was as though nothing bothered her. What an awesome feeling, if only she were at home feeling this way ... one can only hope ... soon.
My very good friend and sorority sister, Rachel, came up to visit and to stay with Nayelis for a few hours so that I was able to breathe outside of these four walls (that every day that passes feels like its sucking the life out of me ... now I know how Nayelis feels). I am very appreciative to her for this! And though it felt good to be outside and breathe fresh air, I couldn't help but to think of Nayelis every few minutes. I know everyone says that one needs to be leave the room and breathe at times and not feel guilty about it. But it's hard not to feel guilty. It's something that I'm still learning how to deal with it.

Sunday 9/11 : Day +2 
Remembering all the lives lost...

Counts for today: 

WBC: 0.2

HgB: 9.4

Platelets: 36

ANC: 0

It started as a quiet day for Nayelis & I. She slept in as she cuddled with me.
Blood pressures were getting better, but her tushie was getting sore from the diarrhea these medicines were causing :( Because it was getting uncomfortable to have her diaper changed, the doctors started giving her very small dosages of pain medicine right before diaper changes.
Later that afternoon, we had surprise visitors!
Omar came back up to drop some important mail I needed, but he also brought with him my sister, Lourdes, and nephew, Papito! I was so excited to see them, but Nayelis' excitement beat mine! LOL

Nayelis was also excited because the nurses brought in her AWESOME and CREATIVE count's calendar full of MONKEYS!!! (It's where they keep track of her counts for me)

And before we knew it, it was time for our visitors to go home. As much as it was awesome for them to come up, it was also hard for Nayelis to see them leave. She became upset, and didn't want to look at them. She didn't want to say bye, not even to her daddy! This has to be one of the hardest things for her at this age. Not being able to interact with her loved ones as she would like to, not being able to roam the halls like she's used to, not being able to be free to do what she pleases. How do you explain to an almost 3 year old that they can't do the things kids her age do? Someone please help me because I don't know.
You see, during her 1st transplant, it might have been easier in some ways because she was still unable to express herself or know what she was missing outside of the crib.
I managed to calm her down, and she was then good to go. We became occupied with the many things stored in this room for her.

Monday 9/12: Day +3

Counts for today: 

WBC: 0.1

HgB: 9.0

Platelets: 27

ANC: 0

So her counts are starting to drop. As expected. This is where we have to be careful with Nayelis because it's where her immune system is ghost. So everyone coming to the room has to gown up with a mask and gloves. Everything is done to keep her protected! 

Blood pressures are stable, while the tushie is not :( 

Traumatizing for Nayelis overtime she has to have her diaper changed. Doctors talked about putting up a possible PCA on her pole. (It's a small pump on her pole that will administer a small dose of morphine in to her line by the click of a button. 

She woke up not in the best of moods. She kept saying she was tired, which is normal for everything that is going through. I wasn't' able to get her out of bed, but thankfully, Occupational Therapy came by first and successfully got Nayelis playing on the mat! She did well, and OT was impressed with Nayelis. =0) 

A page came into the room to inform me that a package was waiting for us in the main lobby of the floor. I stepped out to get it and it was from one of the most influential professors' I came across during my time at UConn! And to this day we stay in touch! Nayelis was excited to see mail! 

Laura, from OT, was done, but Nayelis and I stayed on the mat for a bit. Nayelis played until she tired herself out. She wanted to get into bed, and that we did. Until the physical therapist came by and was able to get Nayelis out of bed again. Only this time, Nayelis thought she was going to be able to leave the room, and when we told her that it was not possible, she took the baby carriage she has here and started slamming it against the door. She was very upset and frustrated. I picked her up and calmed her down. :( She was not a happy camper. She's not used to not being able to walk around when she wants to. These nurses are up for a ride with Nayelis because she is not making anything easy for them. And who can blame her?! No one! She's been 85% of her almost three years being in a hospital, being poked, through scans, and dressing changes... being held down and confined to four walls. Not your average day things for your average three year old. But then I remember that Nayelis is not your average child! =-)

Tuesday 9/13: Day +4

Counts for todaY: 

WBC: 0

HgB: 8.5

Platelets: 5 

ANC: 0

So because her platelets were so low, she received a bag of platelets really early in the morning. It was so early that Nayelis and I slept through it without even realizing it! She woke up, and she still has no appetite. All she wanted to do was stay in bed. Her tushie was still bothering her do to passing of stools here and there. Music therapy came by and Nayelis was excited at first. Ten minutes later she stopped playing her instruments, turned her face, and her whole facial expression changed. Her eyes were watery. I asked her what was wrong, and she said she was tired and wanted to go night night. She then waved to the musicians bye so they could leave her room! The nurse came around and said that she was able to unhook Nayelis from her tubies so that I could bathe her real quick since they had to change her lines and dressings. Nayelis enjoyed the time in the bathtub but then her mood was dampen when it came time for the dressing change. :( 

Never did I think a dressing change would break my heart like it did today. Two nurses and myself holding her down while she screamed for us to stop. To make it worse after the change was done, she goes "I'm sowwie". ='( She has nothing to be sorry about because if I were in her shoes I would be just as pissed off with everything that she has to endure

The nurse took new CBC's (complete blood counts) just to make sure that her platelets were still holding up, and they were, but her hemoglobin had dropped. That meant that she was going to need blood. When the bag of blood arrived, Nayelis was premedicated and as the blood was given, Nayelis slept. During her nap, another package arrived in her name!
Once she woke up, I showed her the package and she was so EXCITED!

Her expressions are PRICELESS!!! She loves to receive mail, so if you can and are interested, feel free to send her uplifting cards /messages! You can send them to :

MSKCC

C/O Nayelis Rivera

9th FL Room 915

1275 York Avenue

New York, New York 10065

You have to understand that any little thing helps when being trapped in these four walls. Especially for a child her age. 

Yet, being confined to these four walls doesn't mean that she has to stop being the social butterfly she is! Tonight she was on the laptop on SKYPE for over three hours talking. First to her daddy and Nandy, then to her Grandma in Puerto Rico, then to a family friend, and lastly to her favorite buddy from Yale: Dylan! 

She LOVES Dylan! Can't you tell? 

And now it's past midnight and I am still up. She just fell asleep a few minutes ago. She was waiting for me to jump into bed with her. So much goes through my mind being here. 

I think of how things were before her diagnosis of Leukemia and I think of the time after the diagnosis and of where we are at today. It's amazing how this most difficult journey that one experiences when we have a child with cancer can also be an eye opener. This journey has illuminated my strength in many ways, and also the "family & friends" who will stand by you, and those who become non existent! And then you have the individuals who step up to the plate to be that "family & friend" you need during this time. I will forever be grateful to those who have become a part of my family these past two years ... who have managed to win our hearts and affections by their acts of kindness and selfishlessness! 

and yet ... 

- even though at times I feel this darkness cover me, I hold my head high and my faith stronger...I would rather walk with God in the dark, than walk alone in the light...

Good night & God Bless! 

Day 0 - "The Day" = Transplant

It's been quite a busy last couple of days, and they left nothing but exhaustion for me.

Quick Recap:
Sunday 9/3 : Day -5 
Today was the last day of chemo! Omar came up to visit Nayelis & I, while Nandy enjoyed time at his grandfather's house. We had a quiet day. Nothing major but fun and games for Nayelis.

Monday 9/5 : Day -4
Today was her rest day. Meaning there was no chemo nor radiation given to her. This day was so that her body can take a rest from all the chemicals being given to her. So we did. Just rest. She and I. Laid back for a bit.

Tuesday, Wednesday, Thursday (9/6-9/8) Days -3, -2, -1  (Radiation 2x a day) 
These three days are a big blur for the most part. I hardly got any sleep. Nayelis would be NPO (no food by mouth) since midnight because she had to be down in radiation by 7:30 am. Transport would come to pick us up in her room and Nayelis would enjoy the only time she's allowed out the room. She liked admiring some of the paintings in the hallway. When the personnel in radiation were ready for her, I would carry her into the room that was waiting for her. I held her close as the anesthesiologist gave her the anesthesia. One minute she was holding on to me like her life depended on it, and the next she would just go limp in my arms. Oh how I hated it every time. That has to be one of the worst feelings ever.  The process would take about an hour. We would then come back to the room where Nayelis would sleep most of the time until the next radiation session at 1:30pm. Most of the time I would try to nap with her, but sometimes I couldn't really sleep. After the second session of radiation was up, and Nayelis would be back in her room, she would still be sleeping or too tired. Her appetite was decreasion, but this is normal.

Friday, 9/9: Day 0
Today was the last day of radiation, as well was transplant day.
I woke up with jitter bugs in my tummy. Not that I didn't think things would not be ok. But I think it's perfectly nervous to feel that way when you know important events were going to be happening. Well we did what we had to do with radiation & I am happy to say that
Both sessions of radiation went smoothly. When we arrived back to the room, after the 2nd session, Omar was in the room. Good. At least I didn't have to experience this on my own, and would have someone to keep my mind at ease. Nayelis was happy to see her daddy here. The nurse came into the room to change her tubing from the regular pole to a monster pole. I have yet to take pictures of the pole, but once I do I will post!
Then the doctors came in to the room and started to gown up. That only meant one thing: It was time! Nayelis was given Tylenol & Benadryl a few minutes before in order to decrease the chance of any reactions. The first unit of cord blood  was hung and lasted about 45 minutes to be infused. Nayelis was showing signs of high blood pressures after the first infusion. Her oxygen level was also decreasing, not much, but a bit. An O2 mask was placed near her face, and blood pressures were being taken constantly. After about 20 minutes of checking, Nayelis' blood pressure seemed to go down to normal for bit. The next unit of cordblood was of lesser volume, so it was pushed at a slow rate through her line. Nayelis slept through the most part of this process, which the doctor liked because it would make things a little easier.
I am blessed to say that the transplant went smoothly, and everything is going as expected. Its past midnight, and Nayelis is still up. I wanted to thank each and every individual who said a prayer today, or even sent positive vibes. As the days pass, and I have more updates, I for sure will keep writing and updating.

Thank you ALL <3

PS: Please remember that you are able to send her mail still.
You can either send to home address of 27 Omega Street, Bridgeport, CT 06606
or
MSKCC
c/o Nayelis Rivera
9th floor room 915
1275 York Avenue
New York, NY 1006

Her 3rd Birthday is coming up on 9/29 and she will be confined to these four walls. If you would like to send her a card, you may do so!

Also, there are two pay pal buttons. One is for donations, and the other is to order your Team Mona Rabiosa bracelet!

And so it has begun ...

Yes, it has all begun. We are already at Sloan Kettering getting prepared for the 2nd bone marrow transplant. Let me just recap a bit of what has been going on these past few days.

Thursday, September 1: Day -8
 We were all up at the crack of dawn. Nandy had to be in school at 7:15am and we had to be on the road by 8 to make it to Sloan by 10. (Mind you, I didn't even sleep a cinch the night before. I was up all night cleaning, packing, making a scrapbook for Nandy with pictures of things we  had done for the past month or two, as well as recording my voice in this book for him. Every time he turns the page, my voice will read the words on that page to him. And I kid you not I had to redo it a few times because I was tearing uncontrollably and I Didn't want him to hear it in my voice.)

I was already in tears when I had to wake up Nandy to get him ready. A few hours before, he had woken up and came to me to hug me and tell me that he doesn't want me to leave. He saw the suitcase on the bed and hugged me tighter. My heart was breaking. I managed to get him back to bed though. So when he woke up, and as I was dressing him I showed him what I made for him. When he turned the pages of the book, and heard my dedication to him,  he blushed and put a huge smile on his face! (Omar tells me that Nandy leaves to the other room and he then hears voice. Meaning Nandy is with the book.) We finished getting ready, and we were all heading out. I looked around the apartment trying to take it all in and knew that I had to just keep moving if not I would break down.

Once we were inside the truck, we made our way to Nandy's school. I walked him in like usual, and sat him down for breakfast. I didn't know how to hug him and keep walking. I felt like I was walking out on him. I helped him open his breakfast and told him to be a good boy. I reminded him that if he ever felt sad to just open the book and hear my voice. That I will always be with him in his heart, and he in mine. I hugged and kissed him quickly and had to run out before he could see the tears streaming down.
Went back to the truck, and we were on our way. I don't remember the car ride down to Sloan because I slept it through. My tiredness was kicking in. When I finally opened my eyes, we were on the FDR getting off the exit. We were just a few minutes away and my stomach was in knots already. We made our way to Sloan's 9th floor, which is were the Pediatric Day Hospital is at. And we sat and waited for what felt like forever. They were waiting to get her room ready. So we occupied time by playing games with her & she loved it when the music therapist came out to play with her!

Before we knew it we were being brought back to M9. The pediatric BMT floor. And the room was ready for Nayelis. But because there wasn't much that needed to be done with Nayelis, they allowed us to leave our belongings in the room, and take a walk before actually admitting her. We took advantage of this and took her to McDonald's up the street for some chicken nuggets! Her favorite, aside from Chef Boyardee's Spaghetti & Meatballs.

Did you know that McDonald delivers here in Manhattan?! Yes, it does! $10 minimum. LOL

Ok. So we returned and waited for the doctor. The Childlife specialist came by with some things in hand for Nayelis already, and told us they were cleaning up a kitchen set to put in her room for her. The more distractions for her the better! She's going to need them since she will be confined to this one room for who knows how long.

The doctor came and reviewed with me protocol for the treatment Nayelis will be receiving. This is what it looks like:

• Thursday 9/1 (Day -8) : Admitted
• Friday 9/2 (Day -7): Chemo starts
• Saturday 9/3 (Day -6): Chemo
• Sunday 9/4 (Day -5): Chemo ends
• Monday 9/5 (Day -4): Day of Rest  .... Happy Labor Day
• Tuesday 9/6 (Day -3): Radiation starts  ... 2x a day ... Happy Birthday Omar (Nayelis' dad) 
• Wednesday 9/7 (Day -2): Radiation ... 2x a day
• Thursday 9/8 (Day -1): Radiation ... 2x a day

Friday 9/2 : Day -7 
First day of chemo and she took it well. No side effects yet. She was still full of energy. We had our very 1st visitor as well! My sorority sister, Mari, came by and spent time with us.  We then played with her kitchen most of the day, as well as with the Leap Pad and coloring books. We also watched a lot of Yo Gabba Gabba!, which is her favorite.I think we both know the DVD by heart! lol Nayelis also became an artist for the day. Child Life was celebrating the artist Jackson Pollock, so they brought in paints and papers for Nayelis to paint. I took pictures of her playing. I am a big picture person. I like capturing every single moment.

 That day, I also received a call from Nandy! He was so excited because he earned 4 paw prints today!!! (In his school, they can earn up to 6 paw prints a day, and at the end of the month if you earn 75% of the paw prints, the school has a surprise for the kids.) He was so happy because he had a difficult day yesterday because of everything and only earned 2.
MOmmy told Nandy how proud she was of him!!! 
I asked him if he wanted to talk to Nayelis, and he said he didn't. :( So unusual of him. And I think I know why he didn't want to talk to her. It has to do with the fact that I am here with her, and away from him. My poor baby. He's had to grow up so quickly :( 


Saturday 9/3: Day -6


Today was day 2 of chemo. She took it like a champ. 
We SKYPE'd with Nandy and Daddy for a bit. She then played with Mommy! We played a bit with the kitchen. We also got down and dirty on the floor with Play Dough! :) 


Today we also had visitors! 
My close friend and sorority sister, Rachel, came by to spend some time with us! She also brought Nayelis some of her favorite snacks. Can you guess which? 
Hmmm... if you said Chef Boyardee's Spaghetti & Meatballs and Ruffles Sour cream and cheddar ridges, then you are RIGHT! Oh and let's not forget the Fruity Pebbles. Her reaction was priceless! 

And before we knew it, Daddy was knocking on the door. Nayelis heard the knock, saw who it was and squealed with joy, "DADDY"! He also came with snacks for her! 
And you already know, if Omar was here so was NANDY!!! He came to visit Mommy. 
Only thing is that he is not allowed on the floor. (Kids under the age of 12 are not allowed on the floor due to germs and keeping the patients as safe as they can) So Omar stood with Nayelis while Mommy spent time with Nandy!!! Rachel and I took him to a playground that is across the street from the hospital and he had a blast. It felt so good to see him and hear him talk & laugh. 

When it was time to say goodbye, I didn't know how to let go of him. :( 
He was upset because he wanted to see his sister and couldn't. 
He gave me his action figure that he had brought up with him so that I could give it to Nayelis. 

Mommy, I want you to give this to Beba. But it's still mine. She can play with it though. 

My heart broke and my tears came rolling down. I gave him a big squeeze and just like that he got on the elevator with Omar. And just like that I was walking back to Nayelis room Feeling like I was torn in two. I gave Nayelis the action figure Nandy left for her and told her it was from Nandy. This is what she did.

 She asked for him and I had to tell her that he went home already. :/
We played some more, and before we knew it we were both laying in her bed. She snuggled next to me and fell asleep.

Every day and night I ask God to provide me with the strength needed to overcome this all.
I have faith that Nayelis will do well with this process. I am not saying that it's not going to be difficult, but in the end everything will be fine.

Thank you for joining us in this journey. As well as for your thoughts and prayers. We need all the prayers we can get these next few weeks.

For those interested, you are able to order the Team Mona Rabiosa bracelets right from this page. There is a pay pal button to the left of the screen you are able to use. As soon as the money is received, I will mail you the bracelet.

Also, if anyone is interested in sending us mail, you can send it to:
MSKCC
c/o Nayelis Rivera
9th floor  rm 915
1275 York Avenue
New York, New York 10065