Another sleepless night for me.... I don't like it because it makes my mind wander to places I don't want to go, things I don't have answers to nor want to deal with. But it's what a mother does, Worry! So I'm up putting my thoughts in writing to update you all.
I first want to start by telling you that Australia was AMAZING!!!!!!
Yes, yes I worried myself sick before the trip, but the actual day of our trip I put my trust in God. I pleaded with him to let Kass rest and not be sick the whole trip. That she could recover from the long ride and be able to enjoy her vacation. He listened! Sigh! We could have not been more thankful to him for the gift.
Kass decided the night before she did not want to be on treatment while in the air. She did not want to deal with pump issues, pack the backpack around, have to go to the bathroom every couple of minutes since she drinks so much water while she's being infused because of the high sodium content of the medicine and she also did not want us to deal with IV bag changes on the airplane. Ryan and I timed her doses so she would end one of her doses right before we left for Vegas to LAX and it would resume during our layover there and end again right before lift off from LAX to Sydney. About 2 hours into the flight she took a full dose of phenergan. We were lucky to have an empty seat between us so she stretched out and slept and slept and slept. She slept for pretty much 11 hours straight. What a relief!
When we got to Sydney after our crazy 14 hours flight. Wow, what a long flight! Ryan prepared her medicine and got her back on treatment before we even went thru customs. She was back on track! We picked up our rental and commenced our adventure! Mind you, driving on the wrong side with a car with a steering wheel on the passenger side. Wooooo that was scary for all of us, but fun. LOL
We checked into our condo hotel and went out to explore Darling Harbour that was just walking distance away. After, a great meal we actually went back to the hotel and let Kassidy rest for the remainder of the day. I brought hydration IV bags with me and in between treatment got her hydrated and she slept and slept and slept till the next day.
We woke up to a welcome call from a representative from Make A Wish Australia. She was darling in her cute Australian accent and she pleasantly went over the itinerary with us and asked us to call her if we needed anything. She first helped us getting us to the right spot to go get Kassidy's blood taken to the routine blood test we have to do every week. She found a children's hospital that bent over backwards to run the test for us and did not even charge us. What a great start to our trip!
During the rest of the time we traveled and saw beautiful places. Sydney is a gorgeous thriving city and very clean. The people were so polite and helpful.
Here is the link to the youtube video that I made up of most all of the pictures we took of the trip, it tells the story of everything we did.
Check it out!
I think my favorite part of the trip was when Kass got to pet all the animals at the Wildlife Park especially the Joey(baby kangaroo). I can't tell you how emotional it was for me to watch her interact with all the animals. We were there with a big tour group and all the animals would either come right up to Kass and no one else. Not only that, but they would sit still and let her pet them. It was almost like they knew......
One of the zoo keepers brought the little Joey wrapped in a pack that simulated the momma's pouch, he was so excited and fidgety in the zoo keeper's arms and when she handed her to Kass this cute baby kangaroo settled into Kassidy's arms like he was home. Not only that, but looked at her so lovingly I was in love.
I am so thankful to the Make A Wish Foundation for such a precious gift. The trip was fabulous and being able to share Kassidy's wish with the whole family was a true blessing. It renewed us as a family and we made some great memories we will never forget. We will forever be grateful to the organization and especially our wish granters; Justin & Barbara, they volunteer their own time to do this for children all over Las Vegas. How great is that!
We would like to keep giving back to Make A Wish and help other children with their wishes. That's why again this year we have registered a Kassidy's Army team for the 12th Annual Run for a Wish and Walk. PLEASE come run or walk with us and show your support for these children!!!!!!!! Also let Make A Wish of Southern Nevada know that Kassidy's Army supports their program 100%. It is only $20 for the run and $15 for the walk.
COME Join our Team!
When we got home on Sunday morning after our trip Kass pretty much came home, ate and was in bed again. She wanted to get rest so she could go to school the next day since it was her first bowling match and not let her team down. Right before we left for Australia she had found out that she had made captain of the Centennial Girls Varsity Bowling Team, so proud of her. She takes leadership and especially her practices and games pretty seriously. She does not like to miss especially when others are relying on her. I admire that about her.
She had two matches back to back that week and by Tuesday evening she was exhausted and in pain. Her legs were so swollen and painful that she could not walk. She also developed red looking bruisea like nodules around her legs, Ryan and I were so scared especially since elevating them that night and advil did not help by the next day. I was advised by the nurse at the Burzynski Clinic to take Kass for a Doppler Ultrasound to make sure she had not developed blood clots from the long airplane ride. We were panicked, blood clots are not good and blood thiners are not great for brain tumor patients. We took her to Steinberg and got results right away that her legs were clear, that week we kept her home 2 days from school to let the swelling of her legs subside and just let her rest. Thank you God for a clear ultrasound!
I truly think she tried to do too much too soon after our trip. I know we were exhausted still, but she is one strong headed stubborn girl and when she gets something in her mind, she's full speed ahead. I do think sometimes it's the only way she learns her limitations.
This week she gaves us another scare. She woke up from her morning nap feeling really shaky, a bit disoriented and would not walk straight. I immediately called my neighbor to ask for help working our new glucose meter since they have a child that has type 1 diabetes. He came over and helped me work the small apparatus and her blood glucose was at a 37!!!!!!! My gosh, almost at coma level! He was wondering how Kass was even standing. I learned at that time what to give her to eat and drink to raise it quick. This has happened once before, but the glucose level was not that low. The doctor is not quite sure why this happened, we will just have to keep a closer eye on this issue to make sure it does not worsen. It could just be a fluke! I hope.
We have also been talking about Kassidy's ANP treatment. Kassidy at this time feels she needs a break. So when she has her next MRI in the end of January and if the results are stable she would like to start weaning herself off her treatment again. Ryan and I understand her concerns and don't blame her. I cringe every time I have to clean her port and she winces because I am putting alcohol on an open wound every time. I can't imagine the pain she feels every time I do that. I know that her body is tired and she would love to get a nights sleep without getting up every hour to go to the bathroom. I know she hates the fact that the 80 pounds she has gained because of the steroids has taken a toll on her body and image as a teenager. It's been a long year and half for her.
I know that we made the right decision taking Kass to Dr. Burzynski, we would not change that for the world. ANP treatment reduced Kassidy's tumor by 20% at the beginning, but her tumor has not reduced more in a little bit over a year. We have learned that just because any specified cancer treatment is used for a certain type of cancer it works different on everyone. Everyone is different, our genes our different, therefore everyone's cancer is unique. We are hoping to discuss options with Dr. B soon and see what's in store for Kassidy's treatment future. Right now, we'd like to focus on today and at the end of January when decisions will need to be made I ask that you remember us in prayer. I hope that God continues to guide us on what the next step is for our Kass. I know I worry everyday, but the ultimate will is God's. He has shows us the way thus far and I trust that he will show us the way then. Meanwhile, we help Kassidy in her fight!
NEVER GIVE UP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
|MERRY CHRISTMAS & HAPPY NEW YEAR|
FROM OUR FAMILY TO YOURS