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!
so happy to hear that the transplant went well, hope today is good one for all of you, considering all that you have been through, she is just such a little cutie pie ! what do you think she would like for her birthday? is she allowed to have anything in her room? sending blessings to all~
ReplyDeleteThank you Holly! Not sure what she would like for her birthday! She likes everything! :) She's allowed to have things in her room, especially now to keep her entertained because she will be confined to this room for a while!
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I just read about your sweet girl. I am so sorry you have had to deal with AML for so long. My daughter is 3 and has been in remission from AML M7 for 9 months and we keep praying that she stays in remission. There isn't a day that goes by that I don't think about cancer.
ReplyDeleteIt might sound weird, but I am so happy to finally meet another family with a little girl with AML M7, as it is so rare and usually kids with M7 have downs syndrome. We have felt like the only family in the world with a kid with AML M7.
I am amazed at how much your little girl has fought through! I will add her to my thoughts and prayers.
Much love, Jill
littleairbear.blogspot.com
Hi Jill! It doesn't sound weird because I know exactly what you mean about meeting other families with AML M7! I am happy to hear that your daughter is in remission, and I will add her to my prayers! I am also following your blog! Feel free to email me! Hugs, Yvette
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