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.