We were waiting for some greatresults from my last PET scan so that we could celebrate with a trip to Disneyland. We were just so sure it would be good results...even my Dr was surprised when it wasn't.
The mass in my chest more than doubled in size. It was 0.9 cm, now it is 2.3 cm. The disappointment of enduring through 2 months of chemo and having it do no good is almost unspeakable. There was an amazingdonation campaign going to help us get there and when we got the not-so-good news I was worried that it would all be in vain. How was I going to break the news to my kids?!?
Devastating.
Well the Disneyland trip donations came pouring in. Some small and humble, others overwhelmingly generous. All given with so much care and concern for us. Even after our disappointing news, people filled our Disneyland fund with their love.
The only solution my husband and I could come up with was to go...now! We got scan results on Thursday, we left on Friday night. We had to go before the next round of chemo started, or else we'd have to wait a while until I was strong enough to go again, and we didn't know when that would be.
Seeing the faces of my kids when we told them that we were still going, and that we were leaving the next day waspriceless. Unforgettable. Their screams and squeals, the jumping up and down...it was pure excitement. The kind of excitement only a child can produce...times 4 kids.
Yay!!!
Disneyland here we come!No time to even think about what the future holds. I need to pack!!!
Me right before my scan. My hopeful face, lol. :)
The WHOLE trip was arranged for us and paid for by many amazing people. Isn't that mind boggling?!?? We couldn't have done it by ourselves, not now...and definitely not as nice of a trip! Thank you. From the bottom of my heart and the depths of my soul, thank you all.
Here is the only way I can think to show just a fraction of my gratitude. Here is the story of our trip, and lots and lots of pictures. Enjoy it...we did!
Friday:
At the last minute we had an amazing donation of an airplane flight to CA...all of us! We were just going to drive, we do it often enough with all of our family over there, but flying was a real treat!It was Lily's first time ever on a plane and Joey and Drew's first time that they remember (they were little) they loved it.
Airport fun. Andrew on the far left...haha!
Lily, Joey and I
Jess and I
Boarded!!!
Andrew, Jess and Matthew
After arriving in CA we rented a van and we were off! First stop was my parents house where we stayed for a few days while we visited with them and Jess' parents. We couldn't come to CA without seeing our folks! We had some nice family time on Friday and Saturday. Family first!
Sunday:
After a very nice, and much needed visit, we made our way to our hotel room in Anaheim at about 3pm for check-in. What a nice place!!! It had a king size bed in one room with a big couch, a little kitchen area, and 2 full size beds in a connecting room with a bathroom and a small second fridge. It was perfect and fit all of us very well. We felt so spoiled!
Just me unpacking
Boys doing what they do best...raiding the fridge. ;)
The first thing the kids wanted to do was swim...it is February crazy kids! To let them get it out of their system we just went ahead and ok'd them to go ahead and do it. Turns out that the pool was heated and they had a very nice little dip...despite the fact that it was 56 degrees! I'm glad they didn't freeze.
Our room was on the third floor and the pool was on the fourth. Kids thought that was awesome.
Although the pool was warm, the hot tub was warmer!
Cute faces
Our hotel "The Camelot" across the street from the park. Perfect location.
Once the kids got cleaned up we had some dinner then hit Downtown Disney. I hadn't been there in years and I knew the kids would like it. Kind of like a Disneyland warm-up. We bought the kids some Disney clothes before the trip and surprised them with it! A money saving idea that worked outperfectly.
Kids on the balcony of our hotel
Walking to Downtown Disney
The Lego store
We had never tried funnel cake or German crepes before...we had to live a little!
True love (aww...so cheesy)
Monday:
Here we go! After our night at Downtown Disney I was pretty worried about my stamina. I hated to admit it (stubborn), but I needed help, so we rented a scooter. You know, the grandma kind that you ride around. Hehe...just kidding, but I wanted to be sure that I could last the whole time. 3 days isa lot of time at Disneyland! The company was great and delivered the scooter to our hotel lobby. Then we were set to go!
Waiting for the scooter to come
We're in!!!
We got inside the park and who do we see first? Minnie Mouse!!! Lily's favorite! One thing that Lily couldn't get enough of was hugs from the characters. In the past she has been very scared of the Chick-fil-a cow that has been at a few of our fundraisers, like can't be in the same room without crying, scared. I was quite nervous about how she'd be. But as you can see, she couldn't get enough of them. I was so glad that we didn't have to spend our trip avoiding the characters. Whew!
Lily getting her first, of many, character hugs
Minnie complimenting L on her polka dots
Pluto showing off for us
Another amazing perk of our first day was that we had a professional tour guide with us! Robin knew me from a few community theater productions that my family and I were a part of when I was younger, and she offered her services for the day! Awesome!!! It was so nice to have someone with us who knew not only the park, but how to optimize our time and energy. She really set us up for a super successful trip. She gave us her inside tips and her own personal time so my family could have a nice time. Thank you so, so much Robin!!!
The crew
Us with Robin getting ready to tackle our day
Famous castle
On Dumbo
Jess and Andrew
He tried and tried, but never got it to budge, dang!
At Snow Whites Castle
Pinocchio
Pinocchio
About to be swallowed by Monstro the whale
Autotopia driving fun
Kids showing off their colored tongues from the suckers that Robin gave them in line for Pirates of the Caribbean
Jungle Tours
Listening to the Jungle Tour corny jokes
Lily and I met Genie when we were separated from the boys for a bit. Lily was so excited...I thought he was kind of creepy, lol!
One thing that Disney never disappoints with is their parades. It was phenomenal and so much fun!!! The kids faces just lit up with every float, and Lily waved so cutely and with so much enthusiasm to almost every character. Beautiful costumes, awesome performers and an all around fun night. It was a magical way to end our first day for sure.
Amazing drumline
Dancing princesses
Lion King
Tuesday:
We had the opportunity to make reservations at the Storyteller Cafe. It was a wonderful breakfast buffet experience with a number of fun to meet characters walking around. We really had a good time there, and the food was delicious!
Jess showing off his yummy food
With Dale
with "Terk" from Tarzan (I had to look him up)
Mickey waffle
Looking at the map to California Adventure and planning our day
They participated in a parade around the restaurant with Koda and earned these pins!
Koda from Brother Bear
Matt and Lily. She is sneaking in another big fuzzy hug from Chip!
The boys look like twins, haha!
Once we had our bellies filled we were off to California Adventures!!! It was thefirst time for all of us, so since none if us had been there before, it was anextra special "first" we could share together.
First stop, CARS land. It was so cute and so much fun to feel like we were in the movie. It ended up being one of their favorite"lands".
Andrew being a ham like usual
Boys waiting for the girls at a bathroom break. Girls take too long.
Tons to see and so much to do! We saw Minnie singing and dancing, the kids rode a zip-line and did some rock climbing and did an obstacle course. Fun stuff! Big smiles and lots of laughing!
Smily Joey
Matt being an awesome big brother, like usual.
In the above pictures Lily looks so smiley, but she actually had a fever. We were able to control it so she could have some attempt at a nice day, but in the pic below you can tell she doesn't feel well, but is being a real trooper. She is an awesome little girl. So proud of her. One of her favorite rides was Mickey's Fun Wheel. It brought out the giggles in her. I love the video that Jess made. VERY FUNNY!!!
Sick baby girl
Cool pic of Mickey's Fun Wheel
View from inside the ride
Looks on their faces, love it!
Once we were done there, we explored the rest of CA Adventures. Rides and trolly's with singing characters on them made it so wealways had something fun to see and do! It's like being in a Disney movie!
Lily waving to Mickey int the trolly with singing characters from the Newsies on it
(kids didn't know who they were).
Great view of the park. (I'm in the bottom left corner)
Sully
Lily sneaking in another big fuzzy hug, hehe. :)
You can't tell from the pic, but Lightning McQueen was driving down the street!
The CARS ride was one of our favorite rides, so we went on a second time and bought the pic. Can't see Andrew well, but Lily looks adorable with her little arms up. :)
I think Drew was bored on this one, lol.
Sick girl smiling!
My "big boys"
Lily excited to drive
This would be a perfect pic if Drew wasn't pulling a face...oh well, he just can't help himself.
To get Lily through the day I had her ride on the scooter with me instead of walking around. Well, around dinner time, the day finally caught up with her and she fell asleep. Sweet baby. It was cold and herloving daddy gave up his warm hoodie so she could have a blanket. He was a little cold, and it was definitely a challenge for me to hold a sleeping 5 year old on that scooter and drive it, but she needed us, and we were glad to do whatever we could to make her comfortable.
Jess found us a great place to watch the World of Color show and me and my sleeping princess stayed there for about an hour to hold the spot while him and the boys went to ride California Screamin' again. That was one of the favorites for sure! They came back to us with hot chocolate and we waited for the show to start. The park looked so pretty all lit up.
World of Color show
Wednesday:
Our last and final day. In the hotel there was a bit of drama. Although Lily's fever seemed to have broken,I was sick. Really sick...and so was Joey. His fever seemed to be controlled a little by a fever reducer, but mine wasn't. I don't exactly have the greatest immune system right now. The family was dressed and ready to go. I was still in bed. I didn't want to stay in the hotel by myself, but I didn't really see any other way. I didn't want to risk having to be hospitalized because I didn't give my body a chance to get well.
I was praying. A lot.What should I do? If I didn't go, the kids wouldn't be able to use my special "Guest Assistance" pass to get to the front of the lines and they might not be able to do as much. It wouldn't be the experience they were used to from the past 2 days.
I had a feeling of peace come over me. As I thought about going I just felt that if I went, I might not feel good, but everything would be ok. I decided to give it a try and tough it out. I got dressed and ready in like 5 minutes and I knew that Joey was being tough too. He still didn't feel good. And Lily had to wear the same shirt that she did the day before because she threw up on her other one. Sigh...here we go...giving it our best shot!
The three of us got blessings of comfort and strength from our wonderful, worthy priesthood holder, and we were on our way. Putting on a smile as often as we could.
We found Goofy!
Welovedthe new Star Tours in 3D from the day before, so we went on it again, then for nostalgicreasons for me, we watched the Captain Eo show. Yes, I love all things Michael Jackson. :)
One of the reasons I felt I could to this day was that my mom was going to come and be with us to help...and what a huge help she was!
Waiting at Captain Eo with Grandma
We saw a big line and found out that it was to meet Tinkerbell...Lily had to meet her! Although my pass did us no good in cutting down the wait time, she waited in line with her Grandma for 45 minutes (the longest she waited for anything) just to meet her.
Jess did take the boys to go ride a ride or two while she waited.
Fairies Welcome!
Robin (tour guide) had told us the first day that there are hidden Mickey's all around the park. There really are and we have had fun trying to find them! Andrew was pretty proud to have found this one!
Look carefully, do you see Mickey?
My little fairy girl
Lily with Tink and Terrance
Even the boys got in on the fun!
We met the Mad Hatter too! Lily didn't want a pic with him, lol!
After going on a few ride repeats (Soaring over California was awesome) Lily had to go on the rockets andfinally got the chance to!
Drew
Matt and Joe
Flying high! There's Lily and Grandma!
We did a lot on the third day, but somehow the pictures are lacking. We just didn't take as many pictures. Bummer, but we did both Disneyland and California Adventures. Kind of like we just hit the rides that we had already done that they wanted to do again before we had to leave.
By the end of the day Joey was pretty lethargic, but I was doing fairly well. He wanted to sleep, and I didn't think I could go through another night holding a sleeping kid on the scooter, so I walked while Jess rode and held our sick Joey.
Waiting in line at the CARS ride for a third time. (Jess and Joe are on the scooter)
Although we didn't buy this one, I had to take a picture of the screen. My mom looks so cutecovering her eyes on the way down and Matt is wearing his newly acquired Mickey hands making peace signs. Lily has her little hands up again, but my arm is covering her face. Andyes, I am wearing Lily's red minnie gloves. She didn't want them and I had given mine to my sick Joey. Jess and Joey did go on this ride together on the car after us even though he was sleeping just a few minutes before.
Sorry mom...it is just a great shot!
We parted ways with my mom at the end of the day and went back to our hotel. What amiracle of a trip in so many ways!
The fact that we were able to come in the first place, then to have so many of us so sick that it could've ruined things. Crazy how life is sometimes. So amazingfilled with special experiences and creatinggreat memories, yet still throwing us a curve ball for us to overcome. The great thing about challenges is that after you overcome them you can look back and know that with the support of the ones you love, great friends and a loving God, you did it! That's how we feel.
So grateful and blessed!
The next morning we packed up and headed out. Our flight wasn't until later in the afternoon so we went to see my Grandma and Grandpa for a lunch visit. I failed at taking pictures of us together (boo), but it was a trulyperfect way to end a great experience...with more family time.
This trip will be talked about for along time. We couldn't have done it without you. Your loveandsupportand most of all, your generosity. Thank you.
I'm all smiles and strength. That's what people need to see. That's what my kids need to see. That's what I need. Putting on a brave face does help me stay positive and hopeful even when times are hardest. It's like you can "trick" your emotions into being happy when that's definitely not the first emotion that you feel. You can say "things are going well" enough times and actually start to believe yourself. I know this is important in my path to becoming cancer free. A positive attitude can, and has been what I rely on to get through each day. I try to see how much I do have. My beautiful kids, my fairytale true love that I get to be married to, an awesome support system in friends and family, and so much more. I think the key to having a sunny outlook is gratitude. Even with all that said. I am sitting alone, on my 32nd birthday, in my hospital room (it has practically become mine because I've been here so often) and I'm sobbing. Not just getting teary, but sobbing uncontrolably. Tissues are all over the place in my dimly lit room. It doesn't happen often, and especially not when people are here. Just when I'm alone. I'm not ashamed of this because I feel like this is also a healthy behavior. It is cleansing. So because I don't break down often, when I do I do it right! I cry until my eyes are ugly puffy and my nose is red and hurts from blowing it so much. I just let myself get it all out and I usually feel better. It only takes a few minutes of this and I'm "cured" of my blues. I think the process of my treatments just start to wear me down and I don't realize it right away. My life has so many wonderful distractions (my kids and husband) that I don't get sad often anymore. Being in the hospital is a rude awakening to the seriousness of my situation though. I think I minimize it to help me put good energy and love into my family. Like I said, you start to believe yourself! Even as I am typing, I started out not even being able to see the screen through my tears...now I'm not crying. Writing is very therapeutic too. It helps me control my mind. Sometimes if I'm left alone with my thoughts too long I start to crumble...like now. So I start to type and it helps me realize that yes, I am crying and it is a major bummer to spend your birthday in the hospital, but I am grateful for so much. So again I have changed my emotions through intentional actions and positive words and thoughts...until next time. And next time will definitely come, but I know I can get through this. Not only physically, but emotionally. I am stronger than I think. Well more accurately, I am strengthened when I need it. I know that my faith in Jesus Christ is the rock I need to stand on. I know He suffered and died for us. I know that He knows my physical and emotional pain and He is there to send his angels to comfort me, and that I am never really alone. That is my testimony, in His holy name, amen. Oh...and Happy Birthday to me!!!
I walked into the office alone. I felt well enough to drive myself and I was proud of that. It was my last scheduled radiation therapy for the ever shrinking tumor in my brain, thanks to Dr Flores' expertise. After today the plan is just to get an MRI in 3 months.
I am in the waiting room for what feels like 2 minutes before they call me into the radiation room with the Novalis machine in it. I had met with Dr Flores the day before, so I didn't need to see him today.
Just my final radiation treatment.
Dr Nick Flores (far right) and the Novalis radiation machine
I knew the routine well. I have come out to Scottsdale everyday for the last few weeks. After a friendly greeting from the tech I remove my earrings and lay on the hard, narrow table. Making sure my head is cradled just right in the plastic head-shaped holder. She gets my "mask" and pins my head down to the table to ensure the correct position.
"Is that okay?" She asks.
"Uh-huh" I answer...trying to sound like I'm content. The sooner we start, the sooner it's over.
Me in my mask while lining up the laser
I now cannot move my mouth or jaw, only make throat sounds. Even though I say that I'm ok, putting that mask on my face seems to take my breath away for a split second every time. It is just so tight and fits my face exactly. I would think that having your face trapped and your head pinned down to a table would never become a comfortable experience. No matter how "used to it" you get.
She lines up the laser lights on my head and says, "okay, here we go." Then she leaves the room.
Laying completely still the room is quiet for a few seconds, then the machine turns on. A series of buzzing and beeping sounds start up. There is a part of the machine that actually moves around my head, buzzing and I can see a flashing a light.
This lasts about 6 minutes.
Finally the tech comes back in and starts to undo the latches that are holding the mask down.
Ahhhh...done.
I grab my purse off of the table and give the girl a hug. She is sweet and we've developed a nice relationship.
"Alright, you're all done! You can take this home if you want." She hands me the mask.
I grin and say "why not" and take the weird contraption. Unsure if I really do want it.
Wow. I'm not just done for the day...I'm done, done.
While walking out of the office, I felt happy and proud of myself for completing this huge task. But I really had no one to share it with...because I drove myself.
Bummer.
To remedy this I was sure to talk to some unsuspecting people in the waiting room and proudly tell them it was my last day. They eagerly congratulated me and wished me well.
I stepped outside, into the parking lot and immediately stopped in my tracks. I had a thought that made me want to run back inside and ask if I have to be done. If they are sure radiation is over. Maybe I needed a few more just to be sure.
I started to tear up.
What in the world would make me want my radiation treatments to last longer?
Chemo.
My oncologist was waiting for radiation to be over so we could start chemo. All of a sudden I was scared...and still alone. This part ending meant the next part had to begin. The worst part.
I guess I hadn't really dealt with my fear...despite the strong faith of my last post.
I slowly walked to my car and sat down. I cried as I texted my husband, Jess. The surprising feelings that seemed to dump onto me came out in my message. He promptly texted me back that he would call me as soon as he could get away from his work.
He is my rock and my strength. We we are not only still in love, but are the best of friends.
I wiped my soggy eyes and got on the road. I had to move forward. It was the only way to reach my goals. I do feel like the finish line keeps being moved farther away, but I will never stop moving forward to get across it.
I got home fine. I got a chance to talk to my Jess. I cried more, but I was okay. I wasn't alone anymore. I was safely tucked into his arms and I never wanted to leave.
He said he was proud of me. I knew we had to move on to the next step...scary as it may be. But we will do it together. We are a team.