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.

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.