What an amazing week we have had on Brianne’s Make A Wish Trip. Her wish was to go to Disneyworld!

 

On Sunday morning we were picked up by an Excursion Limo to take us to the airport. Brianne thought all of the color changing lights were really neat inside of the car. We were met by Christie, one of Brianne’s Wish Granters who took us through ticketing, which is where we met Bonnie. Bonnie was our personal airport helper. She took us through security, to get food, and to our gate. She walked us on the plane before it was time to board so Brianne could meet the pilots and sit in their seat. We were met in Florida by Jojo from Give Kids the World. She made sure we had our rental car and bags and sent us on our way to the Village. We had a late dinner from Katie’s Kitchen and settled into our villa.

 

 

 

Monday morning Brianne was up early and ready to go. We were able to explore the Village a little before going to breakfast. We ate breakfast in the Gingerbread House every morning thanks to Perkins Restaurant and a lot of volunteers. We were not even aloud to carry our own trays, there were volunteers for everything. Brianne was able to meet Pluto, Goofy, and Mickey at the Village after breakfast. She brought her Mickey stuffed animal that was given to her the night before to have it autographed. Brianne and Charlie played in Amberville (an arcade) while I went to orientation to pick up all of our tickets. Brianne chose to go to The Magic Kingdom first. We spent half of the day riding a lot of rides including Splash Mountain, Thunder Mountain, Space Mountain, etc. Brianne’s favorite ride by far was Thunder Mountain Railroad. We rode it over and over. Thanks to the Fast Passes we did not have to wait long to get on any ride. Brianne was so excited to go swimming at the Village that we left early to spend time at the pool. It was too cold for me, but Charlie and Brianne had a great time swimming. There is a party every night at Give Kids the World. Monday was Halloween. Brianne picked out a Cinderella dress to wear. The kids trick or treated, played games, and made crafts.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Tuesday Brianne woke up early and wanted to make her pillow at the Pillow Tree. The tree gave her a blue pillow with an owl design. After a big breakfast we headed out the Animal Kingdom. We rode a safari truck where we were shown a lot of animals. Brianne was our sections mascot in the Lion King show. She had to pretend to be a giraffe and danced around with the monkeys. There was a fun river ride that got Charlie really wet. She was also brave enough to ride Everest. She only rode it once though, she was not too excited about the Yeti chasing us or the backward drop. Charlie won a huge dragon in one of the carnival games, but it was too big to take home so we donated it to the Gingerbread House. Tuesday night was Mayor Clayton’s Birthday Party, which meant more games, crafts, cake and ice cream. After the birthday party we went with our friends, The Wards, to the park with the worlds largest Candy Land game. I am so glad we were able to meet The Wards. I had talked with Vanessa for a whole year online in a group of moms with children with ALL. Brianne had so much fun with Kayley and Erin.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Wednesday we decided it would be our "long" day at the parks. Before breakfast we stopped at Keaton’s Korral and rode horses. We wanted to see a light parade or fireworks show. The day started off at Hollywood Studios. Brianne was excited to ride the Toy Store ride that involved shooting at targets. She was able to take pictures with Phineas and Ferb, Buzz and Woody, and lots of other characters. Brianne wanted to take a drawing class. The class chose Snow White to draw. We ate lunch at the 50's Prime Time Café where you get a dessert if you are part of the clean plate club. We played in the Honey I Shrunk the Kids playground. After we were done with Hollywood Studios we went back to the Magic Kingdom to ride Brianne’s favorite rides again. They parade was not happening that night so we went back to Hollywood Studios for the Fantasmic Show. The characters were all on boats and images from movies were projected on a wall of water. Brianne was exhausted by the end of the day. 

Thursday we went to Universal Studios and Islands of Adventure. The two parks are within walking distance of each other with a shopping complex in between. At Universal Studios we were turned into Minions in a 4D Despicable Me ride and we watched a 4D Shrek movie. There was a playground with a very small water slide for the kids to ride. Brianne thought Charlie and I should take turns going with her. The small slide got us very wet! We rode the ET ride before we moved on to Islands of Adventure. There was a Seussland with all Dr. Seuss themed buildings, carousel, and rides. Brianne had her face painted while we were there. We also rode the Harry Potter and Jurassic Park rides while we were there. Thursday night was Christmas at the Village and it snowed! All the kids were able to take their pictures with Santa and then pick out a present. Brianne picked the game of Life. We ended the night with a trip to the ice cream shop and a trip to the park.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Friday morning Brianne decorated her star for the Castle of Miracles. Every wish child receives a star that is placed on the ceiling. There are so many stars! What a perfect day to make a wish on a star, it was Brianne’s one year diagnosaversary. After breakfast we left for Sea World. We started our day at the Shamu Show. We sat at the top of the Splash Zone, but did not get wet. We found out that all Wish Kids get to feed all of the animals, so Brianne was able to feed the Sea Lions, sharks, stingrays, and the dolphins. She would put her hand under the dolphins chin to say thank you and throw fish in their mouth. She tried to feed more than one dolphin, but one followed her everywhere. To thank her, it soaked her when she ran out of food. There was also a fun log ride called Atlantis there. Charlie rode the Manta, which is a roller coaster that you ride on your stomach. She had a caraccture done while we were there. We made a stop at the LaTiDa Spa at the Village for nails and airbrush tattoos. Friday night was the Pirates and Princesses Party with Shamu. The kids danced, had make up put on, did crafts, and officially crowned princesses. Brianne decided at 8:30 that she was tired and needed to go to bed. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Saturday came way too soon. We decided we would spend the day exploring the Village before we had to catch our plane. We played DinoPut and the games at Amberville. On the way to the airport we stopped at Downtown Disney for souvenirs. Brianne wanted a Minnie Mouse pencil box and a baby Dumbo. 

 

Our trip went by way too fast, but that is what happens when you are having fun 24/7. We are planning on going back in a few years to volunteer at GKTW. We could not have imagined in our wildest dreams a trip so amazing. I know I left out so many details including the all day long ice cream parlor, unlimited carousel rides, and special presents that were left in our villa everyday. We are truly blessed.

I cannot believe the last time I updated this site was in January!  We have been so busy with normal everyday life that it has slipped my mind to keep updating.  Brianne has been feeling great overall.  She continues to make it to school most days and is participating in baton after school four days a week.

In February Brianne received her Peach's Neet Feet and they are amazing.  This organization personalizes shoes for sick kids.  The artists are so incredibly talented.  Brianne loves her new shoes.

The first weekend in March Brianne walked in the Children's Cancer Network Fashion Show.  She picked out a dress with leather jacket, purse, and jewelry.  She did a great job walking in front of 800 audience members.  

She was also able to go to the Run to Fight Children's Cancer.  It was COLD!  Brianne danced, had her face painted, and played a few games.  We participated in the quarter mile survivors walk, but Brianne did not want to walk, she ran the lap and then came back to finish with us.  

Brianne started her second cycle of maintenance a few weeks ago.  Her counts have remained stable so she has stayed at 100% dosing of all of her chemo medications.  Unfortunately she caught a cold last week.  She woke up on Thursday a little congested and by the end of the night we were in the ER because she spiked a fever.  Luckily her counts were good enough for us to go home.  Thursday night and Friday morning she began coughing and not feeling well.  I took her back to the clinic for another count check to make sure she was o.k. for the weekend.  On Monday she spiked a temperature again, so we were back to the clinic (luckily  we do not have to go the the emergency room if she spikes a fever during normal business hours).  She had a bag of fluids and another dose of antibiotics to cover her in case of a line infection.  Finally she is starting to feel much better and the congestion is clearing up.  Right when life was normal a "cold" put us back in our place.  A simple cold required a trip to the ER and three doctor's visits within six days.  Hopefully the change in weather will keep her healthy for a while.

We are very much looking forward to another busy month.  Brianne has her Make A Wish trip coming up!

Last weekend we had the opportunity to spend four days with Camp Soaring Eagle at The Briar Patch in beautiful Sedona, Arizona.  We had an absolutely amazing vacation with nine other families that have a child with cancer.  The Briar Patch is a 9 acre bed and breakfast with Oak Creek running along side the grounds.

The kids had Wiggle and Giggle time with Cool Whip, a.k.a. Dr. Jake, and Courageous the Eagle.  Most parents joined in on the dancing and we got quite the workout.  Brianne's favorite dance was "Ice Cream and Cake".













The kids had activities all day long to participate in.  They made jewelry, sand art, played games in the field, made drums, and shot archery.  I heard that Charlie was quite funny at the relay race.  

The camp also had activities for the adults.  Charlie and I both had creek side massages that were amazing.  They also brought in three ladies from an Aveda Salon to do hair and facials.  The moms all got a very special treat.  We were taken out to lunch at Red Rock Cafe.  There were beautiful hand-painted wine glasses for each of us.  After lunch we went across the street to a Allie Ollie.  There we had champagne and shopped.  The store donated an entire outfit to each of us moms.  I was able to get pants, a cami, shirt, belt, and jewelry.

Creek side massage room

                                                   At Allie Ollie


Sunday afternoon we were able to paint our leaf on the totem pole.  The pole will be standing at The Briar Patch for us to visit whenever we would like.  Not only did the pole get painted, but the kids, nurses, and volunteers were painted too. The pole of courage was carved by one of Brianne's favorite nurse's husband, Bob.  It was a lot of fun to watch the progress each day.

Madison painted Brianne's face


          Nurses Stephanie                     
                 and Christine

 

On Sunday night the parents all were able to have a date night.  We went to the lodge for a prime rib dinner while all of the kids stayed with the volunteers to play bingo.

Monday it was time for us to go home.  There was a beautiful closing ceremony   Each child was presented with an amazing quilt to keep them warm.  The ceremony ended at the field with the raising of the totem pole.

We cannot thank The Briar Patch, Camp Soaring Eagle, staff, and volunteers enough.  This was an amazing get away for our family.  

We decided to go back to Flagstaff and spend a day in the snow with Lydia and Vin.  Brianne did not last very long in the snow, but she did sled down a small hill a few times.

I am very happy to report that Brianne had an amazing Christmas.  I was worried we were going to end up inpatient due to Brianne's congestion, but she did not get a fever so we were able to manage her symptoms with Benadryl.  We were able to go to the annual Pasko Family Christmas Party on Saturday and to the Hopkins Christmas get together on Sunday.  We chose to lay low on Christmas Eve so that we would not tire Brianne out too much.  It seems like everyone has been battling respiratory illness and we did our best to avoid it.  The one thing we did on Christmas Eve was go to church.  We had not been to church since Brianne's diagnosis, but because the kids stayed with their parents for the service I was not worried about her being exposed to too many germs. It was great to be back at church and I am hoping we will start to be able to attend more regularly next year.

 Christmas morning Brianne woke up at 2:50 ready to start opening presents.  She was very excited that Santa brought the American Girl Doll that she wanted.  A family from the clinic "adopted" Brianne and went way overboard.  She had about 50 presents under the tree to open Christmas morning.  We spent the afternoon with Charlie's side of the family opening gifts and eating a delicious meal.


Brianne with her American Girl Doll she named Bri.  They have matching PJs thanks to Grandma and Grandpa Doras.









These are all of the gifts that the family from the clinic purchased for Brianne along witht he Lego table the Dad and Grandpa Hopkins built for her.




First thing Wednesday morning we were at the clinic for Bri's count check.  Her counts were great and she cleared to start Maintenance for Thursday.  Thursday Brianne had spinal chemo and Vincristine through her port.  She will receive nightly oral chemo until the summer of 2014 along with lumbar punctures every three months, Vincristine in her port monthly, and 5 days of steroids monthly.  We are very excited to get started with this last phase of treatment.  The nurse explained maintenance as being like Italian cooking, there is no real recipe you just adjust things until everything is right.  We will be going to weekly appointments for a while and hopefully slowly working towards only coming in once a month if counts are within normal range.

Brianne is very excited to go back to school.  As long as her class is healthy enough she should be returning on January 7th. 

We hope everyone is having a great holiday season.  Happy New Year!

Brianne had an amazing time in Flagstaff last weekend at The North Pole Experience.  We were greeted with a room full of gifts for Brianne including an Elf University sweatshirt, sugar cookies, a Ram Rocket, ornament, and lots of other sweet treats.  We had a great time during the experience with Brianne's cousins, Connor and Kylie.  We enjoyed a "sleigh" ride through the woods after dinner.  In the morning we had breakfast with Santa, played at the playground, and packed up to go home.  It was great to be able to meet Morgan and her whole family while we were up north.  She is the person who made our trip possible.

Brianne with Santa's Oldest Elf, Alabaster

Brianne and Morgan

Getting an autograph on her ornament

Making toys in Santa's Workshop

Monday morning Brianne had her LAST dose of chemo for her frontline treatment.  This is the first time she has ever said she did not want her medicine.  She told me she didn't want to feel sick.  She slept most of the day after her chemo and threw up in the evening.  Tuesday was spent laying on the couch.  Brianne threw up again this morning, but seems to be doing better this afternoon.  She has started eating again, so hopefully the side effects are behind her.  If all goes as planned she will never have to take IV methotrexate again, which she is very happy about since this seems to be the medication that is making her so nauseated. 

I have a meeting with Brianne's school tomorrow to discuss her going back to school in January.  She is very excited to be back in school, I am a little nervous about the flu season.  Brianne will have count check the next two Wednesdays and will start her maintenance treatment on December 27th.  Maintenance will consist of daily oral chemo, monthly IV chemo, and spinal chemo every three months.

We hope everyone is having a very happy holiday season!