"OT"

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.



Happy Survivor Day

 
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.

Starting the Count Down

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.

video

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 :)
video
  

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