Brianne was so excited to be nominated to go to The Bat Cave by Camp Soaring Eagle.  It was such an amazing experience.

                The evening started out with our family parking our car at a “secret location”.  The secret location was a police substation and we had Brianne convinced that we were there to meet with the police officers to fight crime.  Her eyes lit up when a limo pulled in the parking lot with a police escort to follow with lights and sirens on.  Mr. Wayne’s chauffeur, Charles Keller, drove us to the secret location of The Bat Cave.

                When we arrived at the cave all of Brianne’s friends and family were there to greet us.  It took her a minute to realize that she had a special guest in the crowd.  When she saw Cliff she ran into his arms.  Brianne met Cliff when he and some of his Rattlers teammates were at the hospital playing games with the patients.  She has had a special connection with him all throughout her treatment.  He is so good to her. 

           We all gathered in Bruce Wayne’s office to watch a video and learn about the Bat Cave.  Brianne opened the secret Shakespeare’s bust to reveal a button that opened the bookcase entrance to the cave.  We were all able to slide down a fireman’s pole to enter the cave.  Even Cliff’s pregnant wife slid down the pole. 

                Everyone got an opportunity to play with all of the gadgets in the cave.  The kids’ favorite seemed to be the machine that let out an ear piercing alarm. 

                Next, we were able to see Batman’s fleet of cars.  The kids (and Heather) watched a movie in the parachute pick up van.  There were so many amazing vehicles to look at including the Batcycle and a Black Widow Corvette. 

                Then it was time for Brianne to start up the Batmobile.  After Brianne ran all the checks to make sure it was ready to go she got to take a ride in the car.  Charlie was able to drive the Batmobile around the building and he said it was really hard to see over the dash.  All of the kids were able to take a ride in both the Batmobile and the Batcycle. 

                Brianne was given so many special gifts at the end of the night.  She received the original Batman TV Series on DVD.  She was then given a key that will start the Batmobile!!  When she gets her driver's license she gets to come back and drive it.  Not only does she get to drive the Batmobile, but when she goes to her first dance, they will give her an honorary ride in a vehicle of her choice from Mr. Wayne’s fleet. 

                At the end of the night Brianne was able to give Camp Soaring Eagle and Hope Kids each a $2,000 check from Wayne Foundation.  They want kids to be able to experience the joy of giving.  It amazes me that they not only give children a once in a lifetime experience, but they let them give back in the process.

               We cannot thank Mr. Keller and Wayne Foundation enough.  This was a night our family will never forget.  All of the volunteers, staff, and police officers took time out of their night for Brianne, which we will forever be grateful for.  We are so thankful to all of our friends and family who helped to make the night so much fun.  

I just realized that my end of treatment post did not post or save! I bet you all thought that I gave up on updating the blog.  Sorry, it is going to be a long update to get caught up from the last one.  OT (off treatment) life has been busy....

Brianne ended her treatment on June 29th.  She had a few friends spend the night and keep her awake so we could celebrate her last chemo at 11:30 p.m.  We could not have been more excited.

795 days of treatment DONE

Ringing the gong  to signify end of treatment

Over the summer Brianne was able to go to Connecticut for eight days with Camp Soaring Eagle.  She had an amazing time.  She still is telling us stories about camp to this day.  What an amazing opportunity for her to be able to go away.  One of her favorite nurses was on the trip which made her more comfortable to leave us for a week.  She has made some amazing friends at camp and cannot wait to go back.

In July we celebrated Brianne's No More Chemo Party and her 9th Birthday.  The toy drive was such a success.  We were able to fill the clinic toy closet and leave three bins full of toys to refill it when it got low.  She was so excited to FINALLY be able to go to Sunsplash and ride all the water slides (something she has been looking forward to since the beginning of treatment).   Brianne's first day of 4th Grade was also her birthday.  She was so excited to get back to school and loves her teacher, Ms. McIntosh.  Ms. McIntosh is also a cancer survivor and they seem to share a special bond.  

Unfortunately, the beginning of the school year came with lots of germs.  It may take up to a year for Brianne's immune system to be that of a "normal" kid.  She managed to get Scarlet Fever twice and strep throat within the first four weeks of school.  She had several visits to the emergency room for fevers and a bunch of tummy troubles from all of the antibiotics she had to take.  During this time I started back to school for Surgical Technology.  It was too hard for me to be away full time on the opposite side of town when Brianne was feeling so crummy, so I withdrew from my program.  I have since enrolled in an online Bachelor's Degree program through the University of Phoenix.  This will allow me to be around when Brianne needs me.

Brianne has continued to do well.  She is learning to play the piano and is taking ballet classes several times a week.  She is very excited to be in The Nutcracker this year.  Physical therapy and orthotics have helped with her walking some.  She is working hard on her stretching to help make standing flat footed more comfortable.  

Last Saturday Brianne developed a fever in the middle of the night.  We still have to go to the ER because of her port.  She had her antibiotics and blood work and she was discharged at 3:30 a.m.  She felt fine and was only worried about missing her baptism in the morning.  She woke up feeling great and was baptized in the morning.  She is so blessed to have so many friends and family that came to support her.  Sunday night the fever came back and we found ourselves in the ER again.  It was terrible.  It took three pokes and a lot of digging around to get her port accessed.  She had antibiotics and was discharged again.  She woke up Monday morning feeling great....until the hives started.  We headed to the clinic where they determined that she is probably allergic to Rocephin now.  She was a rockstar when they had to do a blood draw from her arm for pre-op labs.  We are so excited that she will be getting her port out a little early to avoid her needing IV antibiotics.  She will be "deported" on Tuesday, November 4th!!  

We are so excited to be teaming up with Jette's Journey Foundation to redecorate clinic room 1.  All of the rooms are very boring right now, except for the two that have been redecorated.  Brianne has come up with an amazingly girly idea for room 1.  Redecorating comes with a hefty price tag so we will be fundraising throughout the next few months.  Here is one of the rooms that has been finished already.  If you would like more information about the upcoming fundraisers visit https://www.facebook.com/events/1480271725595213/

As always, we appreciate all of your love, prayers, and support.

 

Not only is today Survivor Day, but it also marks the first day of Brianne's LAST month of treatment.  June 30th will be here before we know it.

 

Brianne has been doing well.  She finished school on Friday and earned straight A's all year long.  Mrs. Olin was an amazing teacher and we are going to miss her.  She started off our busy summer spending time with a bunch of friends and going to a birthday party.  Today she is excited to go to Flip Side for the Survivor Day event put on by the hospital she goes to.

Last month Brianne had her LAST spinal chemo.  I am so happy that she will only have anesthesia one more time for her port removal in December.  

We went camping with friends over Memorial Day weekend and were able to celebrate Brianne's 2 year cancer free anniversary while we were there.

 

 

 

 

 

 

 

 

 

 

 

 

We also had Brianne's Gold Hope Project photo shoot this month.  We truly appreciate Joyful Gestures Photography for taking time during the busy graduation season to take picture of Brianne.  We had a kitten follow us around during the photo shoot that Brianne named Mr. Pokey because he was trying to get in a cactus.

Brianne is so excited to be leaving for Connecticut on Tuesday with Camp Soaring Eagle.  She picked out the biggest suitcase she could find.  It will be very strange not having her around for 8 days, but I know she will come home with lifelong memories. 

As always...we appreciate all of your love, support, and prayers throughout this journey.

It seems like Brianne's end of treatment is just around the corner.  Only 18 weeks of treatment left!  Today Brianne had her spinal chemo along with Vincristine in her port.  I could not be happier to say that she only has ONE more spinal chemo treatment left.  We are starting to plan Brianne's No Mo Chemo Party.  We cannot wait to get together to celebrate Brianne finishing treatment and to thank everyone that has supported our family along the way.

Brianne has had a rough start to 2014.  For about a week Brianne had a dry throat, but it didn't seem to slow her down.  Everything changed when she woke up at 2:00 a.m. with a 102.7 fever and vomiting.  We rushed her to the hospital because with a fever over 100.4 the doctors worry about central line infections so antibiotics must be administered ASAP.   Brianne threw up the whole way to the hospital and about every 10 minutes until she got a second dose of antinausea medication.  Even though her blood counts were great she was still admitted due to the high fever and heart rate.  Brianne spent three days in the hospital.  The doctors believe she just had a virus, but her fevers kept coming back so she stayed on IV antibiotics while we waited to make sure her blood did not grow any bacteria.  When she was feeling good she had a great time making art projects and during music time.

Brianne was discharged just in time for us to go to Camp Soaring Eagle Family Camp in Sedona.  Once again it was nothing short of amazing.  The moms got to go shopping at Allie Ollie and pick out a new outfit along with going out to lunch at the golf course.  Brianne loved all the arts and crafts, archery, and games.  Brianne was on steroid during camp so she had a few "unhappy moments", but overall she had an amazing time.  We cannot thank Juan, Maria Elena, Tyler, and all the volunteers for everything they do to make these trips possible.  Brianne is so excited to spend a week with Camp Soaring Eagle in Connecticut this summer.  It will be such an amazing experience for her and I am sure she will come home with new lifelong friends. 

We had so much fun celebrating our friend Payte's end of treatment.  Payte, Bella, and Brianne all had the same type of leukemia.

Five days after we came home from camp Brianne ended up with a fever again.  She had a flu swab, chest x-ray, and UA.  When everything came back clear we were sent home with instructions to follow up at the clinic the next day for more antibiotics.  Brianne was placed on 10 days of a new antibiotic for what the doctor suspected to be a sinus infection.  She has been feeling great since finishing the antibiotics.  I just wish she would get rid of the lingering cough.  It sounds horrible!    Unfortunately, with adding the antibiotic Brianne's counts were screwed up this week.  Her ANC dropped to 840 when she normally runs in the 1200-1500 range.  She will go back to the clinic in two weeks for another count check to make sure she doesn't drop any lower.  Until then we will be extra diligent with keeping germs away, which is hard during flu season. 

I have to post one more video....the Forever Young Zone was doing Winter Olympic today.  Here is Brianne and her nurse Christine curling :)

  

As always, that you for all of your prayers and support.

We are so excited for 2014!  Tomorrow will begin the six month countdown to end of treatment for Brianne.  

 

Brianne continues to excel in school.  She has had straight A's for the first and second quarter.  She loves her new school and has made a lot of new friends.  She is in an afterschool club that made cards for kids that were in the hospital during the holidays.  We met a couple of the girls from the club at the hospital to deliver the cards and treats to Mr. David.

 

 Brianne's monthly chemo day fell on Halloween again this year.  She trick or treated around the clinic and all the nurses and staff were dressed up as Minions.  She felt good enough to go trick or treating with her friend Kaylee that night.

 

 

We spent Thanksgiving up north at Kohl's Ranch with Charlie's family.  It was a nice relaxing holiday.  Brianne had spinal chemo the day before Thanksgiving.  Thankfully she felt pretty good most of the weekend with the exception of a few stomachaches.

 

 

The Christmas season was full of family, food, and fun events.  We were able to attend the Hope Kids Christmas Party at Metro Auto Auction.  It was incredible.  There were carnival games, pony rides, delicious food, crafts, and more.  Brianne didn't have to have her monthly chemo infusion until the 26th, so she felt great for all the holiday fun.

 

As for Brianne's health, she has been doing great.  Her ANC (measure of immune system) continued to be outside of the 500-1500 range that her protocol targets.  She was staying between 1700 and 1900.  To lower her ANC they upper her weekly methotrexate dose to 125% at the beginning of November.  Fortunately at this dose her ANC is now running right where it should be, 1200s.  The increased dose of methotrexate has led to some not so fun side effects.  Her hair is falling out again.  We are hoping that it is just going to thin, but it has been falling out everywhere since Thanksgiving.  Also, in the last couple of weeks Brianne developed a rash on her face around her eye and down on her cheek.  Thankfully, her current steroid pulse has seemed to help the rash immensely.   

 

We cannot thank everyone enough for all of your support and prayers for the past year.  2014 is going to be a great year!!

 

I know it has been a while since I have updated the site so there is a lot to catch up on.

Brianne finished 2nd Grade and stayed on the honor roll the whole year.  Some kids on chemo have a hard time with school, so I was very happy that she didn't seem to experience any problems learning.  We decided to switch schools for Brianne this year.  She is going to a charter school right around the corner from our house.  She loves that it is close enough to ride her bike and we are hoping that she will meet some new friends in the neighborhood.  So far she loves the school.  It was a hard decision to make because we were very happy at Noah Webster, but the smaller class sizes and having the school in our neighborhood has proved to be a great move for Brianne.

Brianne had a ton of fun over the summer being able to spend time with her grandma, cousins, and Brooke while I was at work.  She swam practically every day.   We went camping over 4th of July with friends and family.  Summer was a bit shorter for us this year, as American Leadership Academy started on July 29th.

Brianne and I were able to go visit our friends in Texas.  They were kind enough to give us vouchers so we could make the trip.  Reagan and Brianne played non-stop for the six days we were there.  It was so nice to be able to catch up with Lori and Dean and see their beautiful new home.  The highlight of Brianne's trip was being able to go to the American Girl store.  We had lunch there and let the girls each pick out a couple of outfits.  The girls have already decided that we will take turns traveling back and forth so they can see each other over the summer.

Brianne also turned 8 this summer.  We had a small party at our house.  She is looking forward to hopefully having a huge swim party next year for her birthday and to celebrate her completing treatment.  She expressed several times this summer that she wished she could go to a public pool, but unfortunately it is not safe enough for her at this point.    Although it upsets her, she understands that we are always going to make decisions based on her safety.  She is so grown up for her age.

Medically Brianne has been doing wonderful.  Her counts have remained right where the doctors want them so she is still only being seen once a month and she is still taking 100% chemo doses.  Our only complaint is the rebound affect from the steroids.  About a week after she stops her steroid pulse she develops horrible congestion that turns into a nasty sounding cough.  Luckily it does usually come with a fever, just a lot of restless sleep, and annoyance.  If this is the worst side effect she is going to experience we will take it.  Brianne is scheduled for her spinal chemo on Thursday, which means we will take a quick trip to the clinic on Wednesday for a count check.

We appreciate all of your continued prayers and support.  It is Childhood Cancer and Leukemia Awareness month in September.  Stay tuned for ways to Go Gold.

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.