The scariest thing this Halloween

The scariest thing this Halloween was waiting 2 & 1/2 hours while Kaitlyn was in surgery having her new port placed. Here is how our day went...

9:15am: We arrived at the clinic where Kaitlyn had her blood drawn (in her arm) in order to test her levels to determine if her blood would be ready to begin the next round of treatment. After 1/2 an hour, the results were back and they told us she was ready to go!

10:15am: With the results in hand, we headed off to the surgery. She was checked in and drugged by 11am. They gave her an oral sedation so that she wouldn't really realize that they were taking her away to the OR without us. That is the most heartbreaking part because you are standing there as these complete strangers wheel your child off to the unknown. You have no idea what they are about to do or what could go wrong. THIS WAS THE MOST FRIGHTENING THING ON MY HALLOWEEN! I hate it, waiting for hours while Kaitlyn is in surgery, it scares me to death. The port placement was supposed to take an hour and they wheeled her off at 11:30.

12:30pm: The OR called to let us know that the surgery just started. So after waiting an hour in the waiting room and thinking it was almost over, we got a call to let us know that it had just started, so the clock started over again. The knot in my stomach doubled.

1:30pm: We got another call from the OR to let us know that the port placement was almost complete and that Dr. Keuker was on his way to do her Lumbar Puncture and chemo administration into her spine.

1:45pm: Dr. DeRoss, the surgeon, came out to the waiting room (2.25 hours after they wheeled her off) to let us know that everything went well with her port placement and Dr. Keuker was with her now performing the lumbar puncture.

2:10pm: They finally came out to get us and bring us back to the recovery area. It was such a relief to be by her side, even if she did sleep for a while. Shortly after we arrived, she woke up for a short time, just long enough to cry a little and say that she wanted me to hold her. So, I took her out of the crib and held her on my lap while she continued to sleep for a few hours. All the while, there was another little girl recovering next to us. Her name was Madelyn and she woke up before Kaitlyn. They were administering her Chemo treatment and she was screaming bloody murder. It broke my heart to hear this little girl scream as if she were being tortured. Much like the screams I have heard from Kaitlyn many times. It breaks my heart to know that there are so many little children dealing with this horrible disease.

4:00pm: Kaitlyn finally woke up with some prompting from Mike and I. We told her that the sun was going down and that it was almost time to go Trick or Treating, she woke up almost immediately. Once she was awake, they started administering her chemo treatment. Since her new port is under the skin, they left it "accessed" after surgery. Which means that they left a needle in her skin which in turn went into the port. She received her dose of Vincristine through the port and then the pulled the needle out. When I say pull, I mean Mike had to hold her while the nurse yanked out the needle. All of this took about an hour.

5:00pm: Kaitlyn received her last dose of chemo, PEG asparaginase. This was administered in two shots in her legs (one shot in each leg). You can imagine how well that went over. But then I thought we were done and the nurse told us they now needed to monitor her for 45 minutes to make sure she didn't have an allergic reaction to the drug. Of course, all this time Kaitlyn is screaming to go home.

5:45pm: Finally we were on our way home. All Katie could talk about on the way home was going Trick or Treating with her friends..."Honor and Mikey and Thorin and Alison and Rachel and Caryn too!!!" She kept saying it over and over...lol. It was so cute.

We stopped at Burger King for dinner because we were all starving. None of us had eaten anything but snacks all day long. We got home and scoffed down our dinner, gave Kaitlyn her first dose of steroids and got her dressed for Trick or Treating.

7:00pm: We met our friends on Grafton Common for our traditional Trick or Treating on South Street. Katie looked exhausted, but she was raring to go. It was SO nice to be able to go out with our friends last night and have a "normal" night with the kids. It was nice to see Katie doing some dancing with Ali & Honor. It was another great Halloween on South Street!!! What a great time :-)

9:00pm: Kaitlyn finally decided she had enough excitement and asked to go in her stroller. We left our friends at the house with the popcorn maker and bar ;-) On the ride home, Katie fell asleep by the time we reached Perrault Nursery (two minutes from the common). Of course then we had to wake her up for more medicine when we got home. She still had to take her oral chemo and steroids.

For those of you counting...that was...
- 1 surgery
- 1 blood draw in the arm
- 1 lumbar puncture with chemo administration
- 2 shots of chemo in her legs
- 1 dose of chemo through her port
- oral steroids x 2
- oral chemo x 1

By the time the day was done, she ended up having 4 different types of chemo and a new type of steroid. How many of us would actually feel like putting on a costume and walking around a neighborhood for Tricks or Treats after all that? I certainly wouldn't feel up to it. But, somehow my amazing little girl was raring to go. Her resilience is absolutely unbelievable. I am in truly in awe of her.

Happy Halloween everyone!!!