4/11/13 Update

Here we are.  Being normal.  How nice it is!  Briley recovered from her sickness and fever.  Thank you God!  Now life is on cruise control.

I've got to admit, it's a little strange not having to give her multiple meds throughout the week.  Today was a very good example.  She always took her methotrexate on Thursday.  It dawned on me earlier that she needs her Thursday meds...........wait a minute.........no she doesn't!  What a wonderful feeling it is!  

We are also getting to sleep all night without getting up and giving her the nightly 6mp chemo!  That chemo is given on an empty stomach, so we got in the habit of setting the alarm at 1:00 a.m., getting out of bed, give her the chemo, and go back to sleep.  We had been doing that for over a year, every night!  The nurses thought we were crazy for doing that, but it never fails, Briley always wants a snack before bed.  It just became routine that we didn't think much of it anymore.  It's been a joy not to have to get up in the middle of the night anymore!

I don't remember if I've mentioned the future plans or not, but if I'm repeating myself, I apologize.  

She still takes Bactrim twice/day for 3 days a week to help prevent a certain type of pneumonia.  She'll take it for the next 6 months.  No sweat!

She'll still have monthly clinic trips to Cooks for the next year for checkups and blood work.  At some point 3 or 4 months from now, she will have her port taken out.

Next year, she will have clinic visits once every two months.  Then the year after that, once every three months.  And so on..........
Eventually, she will only have to go once or twice a year.  She will make clinic visits over the next 10 years.  It will be hard to believe that she'll almost be driving before everything is completely done!

We are still going to be active with CureSearch, helping other families out, and doing what we can.  In fact, Alicia and the kids may be going to the CureSearch walk in Fort Worth this weekend! I wish I could go, but I'll have to stay here and work.

I'll take Briley to Cooks next Thursday for a regular clinic visit/blood work.  I'm curious just how much her counts have improved since stopping chemo.  I'll will update more at that time.

Once again, we appreciate everyone's thoughts and prayers throughout this ordeal.  She's been a little trooper.  So has Bryson.  He's missed out on a lot of things throughout this journey also.  Both kids love going to school!  They get out of bed in the mornings ready to go!  It's been a blessing that she's done so well.  Many families can't say the same.  We are very grateful for the technology and God's grace that saved her life.

3-31-13 End of Treatment!

Briley took her very last dose of chemo Sat. night!  We are very excited and it's hard to believe that the end of chemo treatments are here!  It doesn't seem like it's been over 2 years since diagnoses.  We've been blessed in so many ways and are very grateful for everyone's support and prayers throughout this journey!
As excited as we are about the end of treatment, it didn't goes as smoothly as we had planned.  Briley jumped out of bed saturday night complaining that her chest hurt.  It hurt enough that she was crying.  Her heart rate has been fast since ending steroids last Tuesday, so saturday night's episode scared us and we ended up in the ER.  Come to find out, it was heart burn.  
Her heart is still racing today plus she has a fever.  She was sent home from school with a 101.3 temp.  Always something.  I took her to the clinic today and she was put on a z-pack.  Hopefully that will clear her up.  Her heart rate could be a combination of steroids/fever/dehydration.  We're pushing her to drink lots of water.  Hopefully the fever will be down in a day or two.  If her heart rate is still elevated by Thursday, we'll take her in for an EKG & Echo.  We pray that this too will pass.
I will update more about the end of treatment and things she'll have to look forward to in another post.

Here is a picture that Alicia and I made for Briley and everything she's been through.  

Pictures from Briley's last LP

 Briley in the middle of the LP.  She is getting a mixture of oxygen and nitrous oxide.  Alicia & Miss Amy are doing a good job keeping her occupied with the iPad.  This is why we love Cooks!  They take very good care of the kids and they try hard to make needle sticks as painless/scary as possible.  Even with the long needle going into her spine, she does not notice it and does not remember anything!

 Briley's last scheduled spinal tap!

Briley and Bryson having fun playing "I see" with the picture! 

Some reason, this is Briley's favorite part of the procedure!  She gets to decorate the mask with stickers while waiting and then chooses a flavor that she can smell during the procedure!  She loves the Rootbeer smell!  Once they turn on the Nitrous, she won't remember anything about the procedure!  Miss Amy, childlife specialist, is our favorite.  She is pictured holding the mask.  She's been so good to Briley over the last 2+ years and it's been a blessing to have her on the oncology floor.

The is a picture of Briley's very last chemo infusion.  It's called vincristine and it is partly responsible for her not able to run like kids her age should be able to do.  We are very happy that she won't be getting it anymore!  

Briley's very last spinal tap!

Alicia, the kids, and I traveled down to Fort Worth last night for an early morning appointment today.  Briley was a champ like always during her very last spinal tap! She also had her very last chemo infusion today!  She also started the 5 days of steroids and I'm ready for that to be over with before it even started!  It's hard to believe that treatment is coming to an end.  We've been blessed in so many ways since her diagnoses that I don't even know where to begin.  
It was also confirmed today that her very last nightly oral chemo will be on the 30th of this month!  I didn't realize, but it's only 9 days away!  What will we do?  It's going to be a little weird just stopping chemo.  Just give her the last dose and that's it.  Don't get me wrong, it will be a happy weird, but still.
During her spinal tap today, we were talking to the nurses about everything she's been through.  We talked about other cancer kid's and their families and everything they've been through.  It's changed our lives.  I've changed.  Some for the better and some not.  
I am happy to report that Briley's friend, Lianna is completely done with treatment!  Lianna also had ALL and is a couple of months ahead of Briley in treatment.  We met her right after Briley was diagnosed.  We found out that Lianna was having surgery today to remove her port!  She had a complication with the removal when a piece of the catheter broke off in her artery.  They were able to fish the piece out of her heart and she's doing great!  She will soon have a victory party!  We are so happy for Lianna!  
Above all, we thank the Almighty God for blessing us with two wonderful kids and provided for our family throughout this ordeal. We want to thank all of you and many many more that has been there for us, prayed for us, and just cared for us.

More Exciting News!

Today, we received word from the HopeWell Foundation that they will be sending us to Orlando, Florida for Briley's dream trip!  I can't begin to tell you how excited we all are!!!  We are scheduled for the trip June 2nd - 8th.  Briley's 6th birthday will be on June 7th!!  I'm pretty sure this will be one birthday celebration that she won't forget!
We will be staying at a place called Give Kids the World.  It's a resort of it's own!  If you are not familiar with GKTW, they fulfill wishes of children around the world with a great family experiences.  Wonderful people such as the HopeWell Foundation work with GKTW to provide a child's wish.  We will stay in a villa at GKTW (I bet we don't see much of the villa, other than a place to sleep!), and we will also have tickets to Disney World, Universal Studios, & Sea World!  The GKTW website has several videos of what to expect when you get there.  The kids have watched the videos nonstop that past couple of days!  They really get excited when they see the castle at Disney World, the Orca's at Sea World, and their favorite, ice cream for breakfast at GKTW!  Briley just can't believe that we get to eat ice cream for breakfast!  It's been 3 years since we've been on any kind of vacation, so I can't tell you how excited we are to have a trip of a lifetime!  
Changing gears a little bit, Briley had blood work done today to see how the increase in the nightly chemo dose has affected her counts.  Her ANC is 2600.  It's still higher than we like, but it's down from the count check 2 weeks ago.  Her nurse called and said to keep things the same.  She wasn't worried about it.
Briley will go back to Cooks on the 21st of this month for a LP, IV chemo, and start 5 days of steroids.  
God willing, everything will go according to plan with her treatment and the trip.  We appreciate all of the prayers.  

Exciting news!

Bryson, Briley, and I traveled down to Cooks yesterday for Briley's appointment.  Her counts were great!  In fact, they were too good.  Her ANC was 3010.  It was really high, which is good for normal immune systems, but not suppressed systems.  We want to keep her ANC around 1000.  So, her doctor increased her nightly chemo dose.  Due to Briley's genetics, she's really sensitive to the chemo.  So even a small dose increase could bottom her counts out.  Because of that, she will have a count check in a couple of weeks and we'll go from there.  
Now for the good news!  Because of the good counts and because the flu is starting to fade away, Briley was released to go back to school!  She was so excited about it and she talked about going back to school nonstop on the way home!  I've never known any kid so excited to be going to school!  We've been very blessed that both kids have stayed healthy through-out the winter months and we are also blessed to have had the opportunity to use the robot!  We appreciate the school for making it available for her to use!
We'll keep an eye on her counts.  In the mean time, we'll enjoy each day as it happens and be thankful for what the Lord has provided.  We also thank everyone for their thoughts and prayers!

100,000 Blog views!

Briley's blog has topped 100,000 views!  Kinda scary knowing that many people has read my awful writing, but at the same time, it's awesome knowing so many care about her.  I'm thinking to myself that if this blog has been viewed that many times, how many prayers have we received?  Many many more than that! And that's what counts!
Yes, it's been a while since I've last blog.  I guess in the world of "blogging", no news is good news!  Briley is still homebound school and she is trying to use the robot for her class instructions.  There are some issues we are working on.  We can hear just fine and for the most part, that works.  However, the video is very choppy and freezes a lot.  I think it's just a problem with living in rural Texas and not being able to get a faster internet.  Regardless, we'll make do with it and we are very grateful that Briley has the opportunity to be able to use it!
I think all of the sickness is starting to trend downward.  Less and less kids are being sent home, but it is still going around.  We'll see what this week and next week brings at school and hopefully she'll get to go back soon!
We have also been working on her wish trip.  Since she will be done with treatment on March 30th, we are looking at taking the trip on the second week in April.  As more details become available, I'll will let y'all know.  
She has a regular appointment/checkup at Cooks next Thursday, the 21st.  She's doing really good right now!  The only concern we have is that Briley has some sort of rash on both arms and both legs that continues to get worse.  We are putting the cortisone cream on constantly and it seems to help a little.  We haven't called her doctor yet, but we will if it seems to worsen anymore.  We've tried using frag. free laundry detergent, lotion, and so on without luck.  So I'm wondering if she's becoming sensitive to the meds.  Other than that, she's getting around great and has been feeling great.  Both kids have stayed well!  That has been such a blessing!
You may remember in a previous post that I mentioned that melanoma was found on a young Seymour girl.  Addision started treatment at Cooks last week.  She had to change schools and they are basically living at the RMH in Fort Worth.  Please keep her and her family in your prayers.  Their world has been turned upside down and they could use all the prayers they can get.  Thank you!