I have to admit that we have very mixed feelings about being finished with treatments. I'm so grateful we made it this far with no major problems, but in the other hand, we are no more actively preventing her leukemia from returning. It's a scary place to be. I actually feel more depressed today than the day she was diagnosed. I'm exhausted, wore out, and ready to be done and move on. Each of us have lasting side effects from this crazy cancer life.
We could not be more proud of Presley. She is strong, and has endured so much. She is our hero and our sunshine. Her smiles remind us that everything is going to be okay!
May 27th was a big day for Sister! We had to check into the surgery office (same day surgery) at 8:30 am, then we headed to clinic for her LAST port access. lab work, and to see the oncologist. Presley was then given her last Vinc (IV chemo).
In the truck putting emla cream on for the LAST time!
Here she is getting her last port access, doing it all by herself. She didn't me to hold her!
Sending her blood work off to the lab with her favorite nurse!
Thanks so much Doctor Fluchel for being the best doctor! Words can not describe how thankful we have been for amazing, doctors, nurses, staff and facilities. We love PCH!
Last Vinc (IV Chemo!)
At about 10:30 we headed to the 2nd floor to get her port removed. It was scary for Presley, everything was new and not her normal clinic visit. She knew that she was going to have "Pickle" her port removed. She has been sad for this to come. A few months back I told her that she was going to get her port our and she cried. She wondered why anyone would want to take her port out. As far as she can remember her port has always been there. I realized she didn't remember life before the port. But the night before she told us it was okay if they took her port out. We were happy to hear that.
They had us go into a room to wash her and change her into the surgery clothes/gown. She cried hard.
Then we went to the waiting room.
I was so thankful that day (everyday) for the Child Life Specialist. She explained everything to her and helped Presley to realize that everything was going to be okay. She used the hospital dolls to explain what was going to happen to Presley. She told her that when she wakes up she is going to have an IV in her arm and no more port. Presley was calm at that point. She was starving. She finally after waiting for an extra hour wheeled herself back for surgery at about 12:00 pm. She was brave.
The anesthesiologist let us go until the doors. Then told Presley to kiss mommy and daddy because they needed to stay here. She was so brave. We kissed her goodbye and tears were in my eyes.
Time stands still when your loved one is behind those doors.
About an hour later the surgeon found us in the waiting room and told us that she was getting her LAST back poke and that everything went well with the port removal. We waited for about 10 min and then we were invited to see her in the recovery room. The doctors said she came out of anesthesia happy and did great. She never cried.
We then headed back to clinic for her IV antibiotic! She didn't love getting the antibiotics in her hand so she was thankful when that IV came out and it was only an hour.
Family, friend, nurses, and doctors gathered around to sing and watch her ring the bell!
The nurses sang:
"You got a smile on your face, that you cant erase, and you just cant wait to get our of this place! Singing NO more, no more chemo-therapy. No more, no more chemo-therapy!
She then rang the BELL loud and clear!!
Ring this bell,
Three times real well
It's toll to clearly say
My treatments done,
This course is run
Now I am on my way!
I remember that first week back in March of 2013 when Pres was first dx. We were inpatient. We heard the bell and cheering. I remember the nurse telling us that it would be us in 2.5 years. I thought we were never going to make it. We made it! She did it! No more chemo. Can't wait for her to know what it feels like to not take chemo everyday, to be able to taste her food again and to not feel crummy all the time. I want her to remember life after cancer! There is nothing more than a parents wants for your child with special needs to feel like any other kid. To just be a normal kid.
Clinic was long, 8 hours. We were so excited to hit this milestone!
Here she is the day her port was placed and the day it was removed! My baby has grown up!
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