Happy Holidays

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!

The North Pole Experience

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.

Interim Maintenance 2

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.

Busy, busy...

We have been very busy this past week.  Brianne has felt great, with the exception of getting tired early in the evenings.  

Thursday we spent most of the day at Brianne's friend Kaylee's house.  Heather and I made tutus for the walk on Sunday while the girls played.  On Friday Brianne had a clinic visit.  Her counts went up a little, but nothing drastic.  She was high enough to not need a transfusion though.  

Saturday morning I finished making tutus, and we went to Julia and Eric's reception in the evening.  Brianne had a lot of fun in the "photo booth" at the event.  She thought it was funny to put on the mustaches and glasses for pictures.  

Sunday was the Hope Walk.  We had a great turnout, 26 walkers for Brianne's Brigade.  The weather was perfect in the shade, but a little warm everywhere else.  John pulled Brianne and Kaylee in a wagon for most of the 5K.  With the help of her dad, Brianne made it to the front of the pack and did a little wobbly jogging towards the end of the walk.  After the walk Lydia and Vinnie hosted a BBQ for all of the walkers.  Overall it was a great day!

Look at all those Brianne's Brigade shirts :)

Yesterday we spent the afternoon at McDonald Ranch with our friends Grace and Sara.  The girls rode horses, played on bouncers, rode a train, and practiced their lassoing skills.  We rode on a hayride to a pumpkin patch where Brianne picked out her pumpkin.  She was very tired after a few hours at the ranch.  

Today we went to the clinic for a count check to clear for Brianne's next round of chemo.  Unfortunately, she just missed counts.  Her platelets were good at 133,000 but her ANC was only 680.  Because she has been so tired we decided that her hemoglobin was low enough for a transfusion.  Usually they transfuse under 8, but because she was symptomatic at 8.8 we went ahead with a transfusion today.  We arrived at the clinic at 8:30 this morning and left the POTC at 5:00.  Yet another long day, but well worth it if Brianne regains some of her energy.  We will be back in the clinic on Wednesday for another count check.  As long as her ANC goes up she will start her next round of chemo on Thursday.
Brianne is still feeling great!  The antifungal medication she was put on helped her mouth sores right away.  Brianne had fun celebrating her Grandma Hopkins birthday and playing with her cousins on Sunday. 

On Monday Brianne decided that she needed to clean out her room.  We spent about 3 hours organizing her room and going through her closet.  She is so proud of how nice everything is.  In the afternoon we met Bridget with Hope Kids along with several other families to be on EVB Live to promote the Hope Walk.  She was very shy and wanted to stand in the back with me holding her.  She did let me take pictures of her with Stryker and Howler though.

Tuesday we spent another long day at the hospital.  We had a feeling that Brianne would need both blood and platelets because on Monday night her pulse was elevated and she developed bruising on her legs.   I was surprised to see that her ANC went up to 500, but her hemoglobin dropped to 7.0 and platelets to 38.  We decided it was best for Brianne to get platelets because she was bruising, even though she was not under the normal transfusion level of 20.  It was our lucky day though.  Spirit of Halloween was at the hospital giving free costumes to patients along with several other activities for everyone to participate in.  Brianne had her face painted, decorated a mask, colored a pumpkin, and played a game.  Brianne also picked out a light up ballerina dress with a matching light up wand.  Brianne also had a lot of fun playing practical jokes on everyone at the POTC yesterday.  She has an app on her ipad that farts (yes, my sweet little girl has a fart app.  I bet you can't guess who showed it to her :)).  She set a trap so that when her ipad moved it would fart.  She asked her nurses Christine and Tracy to pick it up so she could get them.  She also played a trick on Nancy with a plastic mouse that she got in her goodie bag from Spirit. 

We are getting very excited for the walk on Sunday.  Brianne will be back in the clinic on Friday to make sure that her counts are safe for the weekend.  If all is well, we will not go back until Thursday the 25th to clear her to start her next round of chemo on the 26th.

Hope Walk

We are so excited to be participating in the Hope Walk this year.  It is only one week away.  If you would like to join Brianne's Brigade in the walk it is not too late to sign up.  
To sign up to walk go to  https://www.firstgiving.com/hopekids/hopewalk2012 and click the green Fundraise button.  Make sure join Brianne's Brigade as one of the last steps.

The walk will be at 9:00 a.m. on October 21st in DC Ranch, Scottsdale.  There will be late registration the morning of the event.

If you have signed up and do not have a Brianne's Brigade t-shirt please email me at tiffanyarust@gmail.com so I can make sure to get you a shirt.    

As long as Brianne is feeling well enough we will be going to the 12 News Studio on Monday afternoon to help promote the walk on EVB Live.  

Another phase down...

Thursday night Brianne completed another phase of her treatment.  We are very happy to have this round done and over with.  We are even happier about the fact that Brianne made it through with very few side effects.  

On Friday we were at the clinic bright and early for Bri's count check.  We packed a large bag of activities expecting that we would have to stay for a transfusion.  To my surprise her counts were high enough to make it through the weekend.  Her hemoglobin was 9.1, platelets 53,000, and ANC 230.  The two sores in Brianne's mouth have been keeping her from eating, so she was prescribed a new numbing medication.  Also, because her immune system is so low they also gave her an antifungal medication which should help the sores heal.  We expect her ANC to continue to drop because her monocytes are so low.  Once her monocytes go up we will know that her bone marrow is working again.  After going to the clinic we went to Brianne's friend Grace's house to do a Halloween craft.  She made a paper mache ghost.  Brianne decided it is called paper mache because it is mushy paper.
Brianne's paper "mushy" ghost

Yesterday we went to another amazing Hope Kids event.  Brianne was able to wear her beautiful dress made by B. Belle Couture.  Brianne was also excited to see her friend Bella.  Her and Bella were the models for the day.  We did a lot of browsing at Moonbeams and Brianne finally decided on a pink, blue, and yellow bubblegum necklace.  There was a wishing well at the event with all proceeds being matched by Moonbeams.  Brianne emptied out her piggy bank and said that she wished that all of the Hope Kids would get better.  I think she brought enough coins for every Hope Kid :).  
Bella and Brianne

We will be back in the clinic on Tuesday morning for another count check.  At this point Brianne is not taking any chemotherapy.  As long as her counts recover she will start her next phase, Interim Maintenance 2, on October 26th.

Just what we expected...

Brianne had a count check yesterday morning. Just as we expected, her counts took a huge drop. We were surprised that her hemoglobin was SO low, because she has a ton of energy. Her hemoglobin was 6.5, they transfuse under 8. Her platelets went from 100,000 of Friday to 19,000 yesterday, they transfuse under 20,000. Needless to say, we had a very long day at the clinic and POTC yesterday so Brianne could get both platelets and red blood cells. We were there from 10:30 until 6:00. Receiving two units in one day (1 platelet, 1 red cell) is a lot of volume for a little body to handle, so it raised Brianne's blood pressure. Right before we left to go home she was given Lasix, which helps remove excess fluids from the body. It works really fast. We didn't make it out of the parking lot before Bri needed to use the bathroom. We stopped before making it a block from the hospital, and then we had to stop again about 10 miles later. 
Waiting for platelets and blood to arrive 
Brianne is also neutropenic. Her ANC dropped to 400 so she is at high risk for infection. She is not happy about this because she wanted to go to another purple carpet premier this week. We told her as long as she is up for it we can go to the Hope Kids shopping event at Moonbeams on Saturday so she can get her special dress. Unfortunately she will have to wear a mask.
Other than a few tummy aches Brianne has been feeling great. She does have a sore in the back of her mouth that has been bothering her and has also developed a large sore on her gums where she accidentally got hit by the iPad. We can't complain, for this being the hardest phase of treatment she is doing great. She has two more doses of oral chemo and then she has two weeks off to let her counts recover before starting her next round.
Brianne will have another count check on Friday to make sure she is good for the weekend. Platelets are only good for a few days, so until her body starts making her own again she may need several transfusions. Thank you again to all who have donated or tried to donate blood :).
Playing with the chemo spill kit after her last home injection of Ara-C.

Better than expected

Brianne has been feeling really well considering all of the chemo that she has been receiving this week.  With the exception of developing a little mucositis, she has done great. 
I took Brianne to the clinic today for a count check.  As expected her counts have taken a major dive.  Last week her hemoglobin was 12.4, today it was 9.2.  Platelets went from 254,000 to 100,000.  ANC is still holding pretty strong at 830.  Luckily she was not low enough to require any blood products today.  We will be going back to the clinic on Tuesday for another count check, because at the rate that they have fallen she will more than likely be ready for a transfusion by then.  
Our home health nurse came over today (twice, because the pharmacy did not courier the chemo like they were supposed to).  Brianne had her first of four injections today of Ara-C.  She will finish her oral chemo next Friday and then have a two week break to let her body recover. 
Brianne's doctor and nurse are very excited about how well she is doing in this toughest phase of treatment.  She is our little Rockstar!  Everyone's prayers are definitely being answered.

Just a quick update to let everyone know that Brianne handled all of her medications well yesterday. We were in the POTC for 7.5 hours for everything. Before leaving Bri was having stool races with the nurses in the hallways :)

Brianne also updated her Beads of Courage while we were in the POTC yesterday.

I woke Bri up at 10:00 p.m. to take her oral chemo (it has to be on an empty stomach). She threw up 5 minutes later. We got her back to sleep and I woke her up again at midnight to try the chemo again. The second time was a charm.

Her home health nurse came today to give Brianne her chemo injection. She is very nice and Brianne seemed to be really comfortable around her. She will be here tomorrow morning and Monday. 

Other than the stomach issue last night, she has felt pretty good. I will give her Zofran before she goes to sleep tonight to hopefully avoid the same situation we had last night. 

A short delay...

Brianne's counts were a little too low for her to start the second part of Delayed Intensification on Tuesday. Her ANC was 580, and it needed to be above 750. Today her ANC was up to 950, so she will start this phase tomorrow. I expect tomorrow to be a very long day. We will be in the POTC at 7:00 a.m. She will have to be put to sleep for her IT methotrexate. From what I hear, the new medication, cyclophosphamide, is very hard on the bladder and requires a lot of hydration to get it out of her system quickly. I am expecting one hour of hydration before chemo and four hours of hydration afterward. She will also be getting her first dose of Ara-C tomorrow. She needs this medication for four days in a row through injections, so we will be having home health come to our house to administer the chemo. She will have a small break and then have four more days of Ara-C. Lastly, she will be starting a new oral chemo, 6TG, that she will be taking every night for four weeks. 

If you lost count...that is 4 different types of chemo tomorrow. The next month should be the most challenging on Brianne's body, but we are praying that she will sail through this round as well as she has the previous.

Happy Friday everyone.  Brianne had a rough start to her week, but is ending it on a good note.  We spent most of last weekend laying around.  Finally on Monday she started to regain some energy.  She also woke up Monday with a small bald spot on top of her head.  Since then she has lost a good portion of her hair again and it is still falling out.  
Brianne's bald spot :)

Tuesday morning we went to the clinic for her count check.  Brianne's counts stayed pretty much the same as they were the week before.  Her ANC was 620, hemoglobin 13.4, and platelets 122,000.  Because steroids can falsely elevate ANC levels we are treating Brianne as if she is neutropenic.  Tuesday evening Brianne was in complete agony complaining of groin pain.  After the pain medication did not help for a half an hour we called the doctor and they suggested that we bring her to the ER.  Four hours and an x-ray later we were told that she was constipated and that can cause shooting pain down her legs.  Constipation is one of the number one side effects of the chemotherapy Vincristine that she has been having weekly.  

Wednesday Brianne woke up with horrible knee pain.  Unfortunately, many kids develop a lot of pain once they stop taking steroids.  Brianne's energy was gone the rest of the day on Wednesday.

Thursday Brianne woke up feeling much better.  We went to The Disney Store in the morning to pick out a gift for her friend Grace's Make a Wish Princess Tea Party.  As soon as the manager found out what we were shopping for she let Brianne pick out a special doll for herself and Grace along with reusable bags to help make their day more special.  We went to the princess party in the afternoon where Brianne was able to have her face painted, get several balloon animals, and have a tea party with the princesses.  She can't wait to hear how Grace's trip to Disneyland goes.  
Brianne and her friend Grace with their dolls that the manager gave them from The Disney Store

Today we ran some errands and started working on Brianne's Halloween costume.  She wants to be Taylor Swift this year.  I just got a call from Bridget from Hope Kids to let me know that a boutique owner saw Brianne at the last Hope Kids event and would like to design a dress for her.  Brianne is so excited.  Please pray that she feels well enough to go to the event on October 13th to show off the dress.  

We will be back in the clinic on Monday morning to clear Brianne for the next round of treatment.  She needs an ANC of 750 and platelets of 75,000 to clear.  

We hope everyone has a great weekend :)

Stella & Dot

We are continuing our fundraising efforts along with Stella & Dot jewelry with an online fundraiser for Brianne's Bridgade.  100% of the proceeds will be going to the family.  You will be able to shop until August 5th through the following link- http://www.stelladot.com/ts/to6i5 .  If you contact the Stella & Dot Stylist, Elisabeth, directly at esk315@yahoo.com or 602-790-0629 she will be able to extend a free shipping discount to you.  There is one necklace that is being highlighted it is called the "Watch Over You" necklace.  It is a  single sterling silver angel wing with glistening handset Czech stones on sterling silver chain.  It really is a beautiful necklace.  Become one of Brianne's Angels.  Happy Shopping!