Thursday, January 24, 2013

Doctor Appointment Today

The kids and I traveled down to Cooks today for a regularly scheduled appointment in oncology.  Briley's port was accessed and blood drawn for a cbc.  Briley did great once again getting a needle stick!  Bryson watched and was rooting Briley on, "you can do it Briley"!  After the blood draw, Briley wanted to show off her dance moves to child-life Kate, so she danced to Rudolf, the red-nose rain deer.  A couple of nurses stopped in and watched the show!

We waited a little bit for the doctor to come in with her counts.  It's always with a little anxiety waiting for counts.  Things race through my mind. 
What's taking so long?
Are her counts ok?
What if her platelets dropped again?
What if she relapsed?

But soon all of my worries ended.  The doc came in with great news!  All of her counts have stabilized and were very very good!  Then, we finally got a end-of-treatment date.  March 30th!!!!!  Her very last dose of chemo will be on March 30th!  I can only imagine the feeling we will have when she takes that last dose of chemo!  God willing, she will stay on track and get through the last couple of months without any issues.  We are praying hard for this and for no relapse.  I think a party will be in store for March 30th to celebrate end of treatment and to give grace to God!

Doc said that after treatment, she will still have to go to Cooks once/month for a year for count checks.  The port will be taken 3-4 months after end-of-treatment.  The following year, she will have to go down there once/every other month.  The year after that will be once/every 3 months, and so on. It will still be another 10 years of checkups at Cooks.  I'll sure take the next 10 years of driving down there just for checkups as long as she stays cancer free!

Homebound school is going great!  We tried out the Skype/robot thing today (I need to get the official name of it).  The robot will allow Briley to sit through her classes at home!  It didn't work out very good today.  Something I didn't think of, our internet is super slow.  One step above dial-up.  So I put a call into the internet company and got a higher speed.  Hopefully that will fix the problem and she'll "virtually" be in school!

I ask you for prayers that both kids will continue to stay healthy and please pray that all of the leukemia cells have been destroyed in Briley's body.  Now that she's getting close, I can't help but think of Tatum.  They found out that she relapsed at her very last LP.  As exciting of a time that this is for us, it's also a time of great anxiety.  All we can do is pray and give it up to the Lord.

Monday, January 21, 2013

2 years ago today......

2 years ago today, we were told Briley could possibly have leukemia.  She had battled the flu for two weeks, but she never really completely recovered.  She was very pale and had bruising in places where it shouldn't have been.  A quick doctor visit turned into lab work and then into our worse nightmare when we were told that Briley could have leukemia.  She would need to get down to Cooks quickly for further testing.  And so the journey began.....

Briley has been in the maintenance phase of chemo this past year.  Other than a fever scare here and there, all things went very well (the oncology side of things).  The treatment plan has gone as expected with no major delays, but most importantly, she has not been hospitalized for sickness!  I cannot say that enough!  Her immune system is still suppressed and will be until the end of treatment.  Any sickness would be very dangerous.  Just look at how much trouble a sinus infection caused!  We've been very blessed in that regard.  She continues to take chemo (6mp) every night, another chemo (methotrexate) once/week.  Bactrim 3 days/week.  Spinal taps with methotrexate injection and vincristine infusions once/every 3 months.  

This past year also involved the wreck.  Earlier today, I went back and read the blog from the time of the wreck in May.  I just assume to forget about it.  But the main thing is, she's doing great right now!  We're all doing great!  There are moments here and there, but all in all things are good.  Briley has been in very good spirits and her mobility is getting better by the day!

In the present, Briley and Bryson are both homebound. We are keeping them away from crowds.  Doing what we can to keep them from getting sick during this bad flu season.  Thankfully, the flu is starting to slow down some, but the stomach bug is going around in force.  Briley has a scheduled appointment at Cooks this Thursday, so maybe we can get a better idea of when she can go back to school.  In the meantime, the school is getting a "robot" for her from the district.  I don't know exactly what it's called, but basically it's going to allow her to have class with her classmates at home!  A robot will be in Alicia's classroom room.  It will have a camera and through the magic of technology, she will be able to see and hear her class at home on the computer.  Her "teacher" and the kids will be able to interact with her through this robot!  Really Really neat!  She's not sure about all of this, but I think she'll do great!  Of course she would much rather be in class herself!  We thank the school and the district for this opportunity!  

There's a couple of things that we are really looking forward to in the future!  #1 and foremost is the end of treatment!!  I think it will be sometime in June.  I am going to try to find out Thursday exactly when that will be.  All I know is that we will have a big party!  #2 and we are very excited about it, we will be taking a trip to Disney World.  I know we've been talking about it for a while now, and it seems like it's been one delay after another.  We've talked about going towards the end of Feb, but now that she's homebound, we might have to delay that a little longer.  Hopefully we'll be able to have a better time frame after the appointment on Thursday.  I will most definitely update more on it once we get it figured out.

Most of all, I don't know where we would be or how we could have made it through all of this without our faith in God. Sometimes we may not understand why, but we would be lost without faith, hope, and love.  Also,  I want to thank everyone for the outpouring of love and prayers over the past 2 years.  There's no words to describe how appreciative we are.  I hope a simple "Thank You" is adequate. THANK YOU!!

Thursday, January 10, 2013

Briley's very last ortho visit!

The kids & I traveled down to Cooks today for Briley's post-op check-up.  It was unusually quiet at the clinic today, not a whole lot of people around for some reason.  In fact, we were the only ones in the waiting area, and we didn't wait long at all to go back!   The doc came in after he read her x-rays and said everything looked great.  He asked how she was doing with her walking and pain.  I told him that she is pain free and walking great!  He said that she was good to go and that he didn't need to see her again!!!! Awesome news!  No more orthopedic appointments!  I thanked the doc for everything he has done and thanked him for being a great doctor.  Most of all, we thank our Lord & Savior the Great Physician!  
We are very glad to be done with this chapter in our lives.  Now we can focus on the oncology side of things.  The kids have been staying home and out of school.  There is so much sickness going around right now that I have no doubt that we are doing the right thing.  We struggled to figure out who would keep the kids when Alicia or I couldn't, but once again, God heard our need and lead us to an amazing person that can come over to the house to watch the kids!  It's all working out great!
However, Briley is missing school in a bad way.  She wants to go back so bad and I do feel sorry for her.  She had a melt down this morning wanting to go to school.  "What if my friends forget about me", she said crying.  I know this is only temporary, and she will soon be back as soon as the flu has made it's rounds.  I can't wait until she can be back to doing normal things without having to worry this or that.
Here is a picture of Briley and her ortho doc after today's great news!

Thursday, January 3, 2013

She's walking/Homebound school

Briley had a very good day yesterday.  She went throughout the day with NO pain meds!!! She also is able to get off the couch by herself and walk!  It's been a blessing that she was able to recover so fast.  Plus, the steroids are working their way out of her system and her appetite is becoming less, along with the roid' attitude!  She's feeling really good!  All is going well with recovery!  We gave her a sponge bath last night on the kitchen bar.  We'll take the bandages off Saturday, so that will help even more with her mobility.
I mentioned in a earlier post about her doctor wanted her out of school because of the flu and pneumonia going around.  One thing that you got to understand is that Alicia and I are the exact opposite when it comes to being cautious about things.  Alicia is overcautious and me, not so much.  I did not like the idea about keeping her out of school just for the reason that she may or may not catch the flu.  She's had her flu shot, so if she did get it, it won't be that bad.  Plus, she loves going to school and if it looked like sickness was going around the school, we could always pull her out then.  I finally realized yesterday that I was wrong with my thinking.
Yesterday, a young cancer patient at Cooks earned his angel wings from complications of pneumonia.  Many many more cancer kids are hospitalized because of the flu.  Flu shot or not, these kids are still getting the flu and having to spend weeks in the hospital.  Thanks to the wonderful world of Facebook, we read daily of one kid or another getting sick, some of which is in Briley's class.  Briley's immune system is still suppressed.  It will stay suppressed until she's completely done with chemo.  She still takes chemo every night and still takes a large dose once/week.  A sickness like pneumonia or the flu could be life threatening.  I now know that we are making the right decision.  Just look at the problems a sinus infection caused.  2 trips to the ER, multiple needle sticks, very low platelet counts and lower hemoglobin counts.  She was almost to the point that she needed a platelet transfusion and the rod removal surgery would have been delayed.  So can you imagine what a sickness like the flu or pneumonia would do?  Not good.  Maybe we should have waited to start Briley in school until next year, but this was something that we didn't think about at the time. I know things will work out.  God will provide the way and I pray that we are making the right decisions.
Anyway, we are very pleased with Briley's progress.  We appreciate your prayers during this time.  
Here is a picture of Briley from last night standing and feeling great!

Tuesday, January 1, 2013

The Rods Are Out!

I'm sorry that I haven't updated sooner.  I just now found the time to sit down to write.  Alicia, Briley, and I traveled Fort Worth Sunday afternoon for Briley's scheduled surgery Monday morning. Alicia's cousin, Keramie, kept Bryson.  We were worried that he would not do good with being away from us, but he did great!  He had Jase to play with that kept him busy.  
Once we got to Fort Worth, we met up with a long time friend of mine and ate supper with him and his family.  After getting a belly full, it was off to the hotel.
The next morning, Briley's surgery was scheduled for 9:00 that morning and they wanted  us there at 7:30.  We got there on time, registered, and up to surgery.  Her doctor's first case was delayed, so that in turn delayed us.  Finally the doc came in around 10:30 for a short visit.  He asked us if we wanted to keep the rods.  Alicia and I both agreed that we didn't care if we ever saw those dang things, so in the trash they went.  They took her back and the waiting game began.
Finally around 12:00 noon, the doc came out and said that everything went fine and gave us instructions on post-surgery care.  He also said that he made a couple of the previous incisions look better so that maybe the scars won't be so noticeable.  We were then allowed to go back to see her.  Once again, her maturity and bravery amazes me.  She was kicked back in bed waiting for us to come in.  She was in quite a bit of pain.  They gave her a little morphine to make it better, and it did.  After a little while, we were good to go.  
Now, Briley has been on the steroid regiment since last week and she has the appetite to go with it (along with the grouchiness)!  This time she has been craving Subway.  Meatball subs & pizza!  Anyway, we were advised to only give her crackers or light snacks during the day until the anesthesia wore off, but Briley was determined to eat a meatball sub.  So that's what she got!  She hadn't had a bite to eat all day and she scarfed it down in no time!  We headed home and she slept most of the way.
Briley has bandages around both knees that will stay on for 5 days.  After that, we can take them off.  She has dissolvable stitches in and she won't be able to be submerged in a bath for a few weeks.  She is able to walk as tolerated, but that hasn't been much since we've been home.  It's been really hard to judge if she's in pain or if it's just steroids making her grouchy.  We've gave her a couple doses of pain meds today and that seems to help for a while.  
Her last dose of steroids were this morning, so they should be out of her system in 3 days.  That's really good news!  We'll take her legs one day at a time.  I know she'll be running around before long!  Bryson has also been really good with her.  So far, no fighting between the two!  In fact, he'll go fetch thing around the house for her!
We appreciate everyone's thoughts and prayers.  We are looking forward to the new year and glad that 2012 is over with.  Happy New Year everyone!  I'll keep you updated on Briley's progress.  Thanks!