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!

I am sure that a lot of people would look at our current situation and wonder how we could say we are thankful.  Even though the past 7 months have been incredibly difficult, they have also taught us to be thankful for the little things.  We have the most amazing support group of friends and family.  Brianne is in so many people's daily prayers, and the prayers are all being answered.  God is good!  I am thankful that I was able to stop working to take care of Brianne.  There are so many children left at the hospital alone becuase their parents cannot afford to miss work.  I am thankful for strangers who have become friends.  The list could go on and on....

Now to catch up on all the fun stuff Brianne has been doing.  On the 15th we went to the hospital for a Children's Cancer Network event.  Brianne was excited to see her friends Grace and Bella there too.  They made scarecrows, pumpkins, and cards along with painting nails and getting makeup. 

Brianne, Bella, Grace

The Wednesday before Thanksgiving Brianne had her appointment for chemo.  The nurses decided to give her the chemo VERY slowly in hopes that it would minimize the side effects.  IT WORKED!  Brianne did not feel horrible from her increased dose of methotrexate.  We gave her Zofran around the clock for the next two days to insure that she would not get nauseated. 

Brianne had a great Thanksgiving.  We were able to go to both side of the family to celebrate.  Brianne even ate some, which is pretty rare the day after chemo.  We went on a bike ride Thanksgiving morning, and guess who was at our door when we returned...Heidi (our Elf on a Shelf).  I wish I had my phone recording when Brianne saw the package at the front door, she was so excited. 

Heidi made Brianne an ornament out of perler beads.

 

Brianne may have had a little too much fun on Thanksgiving.  She ended up spiking a fever of 101.1 on Friday which landed us in the hospital.  When we arrived we realized that her hemoglobin had dropped to 8.3.  After receiving a blood transfusion on Friday night Brianne was back to her normal self on Saturday morning.  We were already planning on stopping by the hospital on Saturday to drop off all the toys we had collected from neighbors, friends, and family.  Brianne was so excited to help fill the toy closet.  She even sold some of her toys so she could purchase new toys for the hospital.  For those who do not know, any child at the hospital who has to have something painful done gets the reward of going to the toy closet.  It is a great way for children to not focus on the pain, but to get excited about a new toy.  We are very thankful to all those who donated.

4 carts full of toys filled the once bare toy closet to the brim.  Thank you Connor, Carli, and Dawson for all your help.

Brianne was excited to help The Purple Society with their bagel and cookie delivery.  The Puple Society was founded by a girl named Natalia with a brain tumor.  She earned her angel wings, but her family is continuing to follow her dreams.  Brianne was able to tell Natalia's parents that she had her Natalia bear in her hospital room that she received at one of the Purple Carpet events that they put on.

We were able to leave the hospital on Saturday afternoon.  Dr. Smith said Brianne was way too healthy to have to stay the normal three days.  We spent Sunday and Monday decorating the house.  Yesterday Brianne had to have her counts checked to make sure she hadn't dropped too far.  Her hemoglobin and platelets were great.  Her ANC dropped to 750.  We are praying it does not go any lower, because it needs to be 750 on Thursday in order for her to get her chemo on Friday.  We do not want any delays.  The way her chemo schedule looks now she should feel well enough to enjoy the North Pole Experience for a night and have the two weeks before Christmas completely off with no chemo. 

We had a lot of fun at the Botanical Gardens for Brianne's class field trip on Tuesday. We met them there to avoid the germy bus. It was hot and the kids were all cranky because they were hungry. The kids learned about life cycles and were able to go through the butterfly garden. The rest of the week was very uneventful.
On Saturday Charlie and Brianne went to see Wreck It Ralph in 3D while I stayed home to scrapbook with some friends. Brianne said that she really liked the movie. 

In the evening was the Light the Night Walk. It was very cold that evening. We bundled up along with around 40 more walkers for Brianne's Team. By the time the walk started Brianne had on four layers on top, two hats, and a blanket. She was nice and warm. We are so fortunate to have such a great group of supporters on Brianne's side.

Most of our Light the Night Team

 



Sunday morning Brianne played with her friend Kylee while her mom, Corey, and I did our physics lab together. We spent the rest of the afternoon playing Risk (Brianne's choice).
Monday morning Brianne had her second dose of chemo for this round. Unfortuantely she was nauseated as soon as the medication was being pushed in her port. She spent the whole day feeling pretty bad, but fortunately the Zofran kept her from vomiting.
This morning Brianne woke up feeling yucky. She has started to eat a little, so hopefully in the next day or two she will be feeling back to normal.
Brianne is scheduled for her next dose of chemo, which will be a higher dose than yesterday's, the day before Thanksgiving. We are praying that she will feel well enough to celebrate the holiday with friends and family, but we will also plan a backup meal for our house if needed.

Last week was pretty uneventful, which was good, because the weekend was very busy.  Brianne was very excited to go to her school's Fright Fest on Saturday.  She had fun trick or treating, seeing some of her friends, and playing the carnival games. 

Brianne and Kylee at Fright Fest

We had to leave early because Brianne had another event to be at.  We went to the Hope Kids Movie Under the Stars to watch E.T.  It was so much fun to watch the movie on the 50' blow up screen. 

A friend from high school was there helping out at the event because her mom's work sponsored it.  It was great to catch up with The Everetts while we were there.  They brought Brianne a beautiful princess bag filled with tons of goodies to keep her busy while at the hospital.  She was so excited to keep pulling things out of the bag, it was so thoughtful of them.  On Sunday morning we woke up and went to our yearly Halloween pictures.  We are missing a few faces in our group picture this year thanks to a lovely stomach bug that is going around. 

Sunday morning Brianne woke up a with a little rash on her cheeks, but by Monday morning it had gotten worse.  I spoke with her nurse practitioner who told me to watch for it to spread.  It never spread, and by Wednesday it was almost completely gone.  On Wednesday, Halloween, Brianne started her day at the clinic.  She was so excited that the clinic staff was able to dress up.  We saw Goofy, cats, Minnie Mouse, Snow White, Bat Girl, a crayon, and even a cow.  Brianne's counts were great, so we were all set to start her next round of treatment. 

Bri with her nurses Mackenzie (Bat Girl) and Brianne (Crayon)

 

After her clinic visit we went to her class party.  Once again, she was very excited to see her friends.  She cannot wait to go back to school fulltime again.  The kids made a ghost craft, played a game, and ate a ton of sugar.  We went trick or treating in the evening with some friends and I think Brianne fell asleep before her head hit the pillow.  It was a very busy, fun day for her.  Thursday Brianne started Interim Maintenance 2.  This is her last round of front line treatment before starting maintenance.  Hopefully this round will go as smoothly as it did in the past.  She had spinal chemo on Thursday along with Vincristine and methotrexate in her port.  She will receive Vincristine and methotrexate every 10 days for the next 8 weeks.  She has had a few moments of not feeling well since her treatment on Thursday, but overall has done quite well.  Saturday we tried to go to the zoo, but it was packed.  Instead, we chose to go minature golfing at Golfland.  It was nice to do something different.  Sunday Brianne ran some errands with Charlie while I did homework.  Charlie and I took a hike while Brianne spent some time with her grandma. 

This week Brianne has no appointments scheduled.  She is excited to go on her class field trip to The Botanical Gardens on Tuesday if she is feeling well enough.  We also are excited for the Light the Night Walk on Saturday.  It is not too late to register if you would like to join us.

http://pages.lightthenight.org/az/Phoenix12/BriannesBrigade