Wednesday, April 24, 2013

Another ER trip

Briley's fever still continues.  She had a little bit of fever on Monday as she has had for the past couple of weeks.  I went on to class Monday night and on the way there, Alicia calls saying Briley's fever is creeping up.  Sure enough, it got high enough for an ER trip.  Upon the ER visit, she had some rattling in her lungs.  We were thinking that she had pneumonia at this point so I found a ride back to Seymour expecting to get things ready for admission at Cooks.  Briley had her port accessed, blood work done, x-rays, breathing treatment, and a rocephin infusion.  Her O2 sats were in the low 90's.  Not real bad, but lower than what they should.  After the breathing treatment, they came up to 96%.  X-rays showed that same spot in her lungs, but no pneumonia!  We didn't have to go to Cooks!  The rochepin infused and we were free to go home.  That night we noticed that she was burning up.  I took her temp and it was 102.7.  grrr.....    Since she had the rocephin, she was allowed to have Tylenol to help bring down the temp.  And it did.
She's feeling pretty good today.  No fever to speak of last night.  So maybe she's on the right track to getting better.  She's also not coughing like she has been for the past month.
We are so ready to get her healthy so things can return back to normal.  I know things could be a lot worse, but it's frustrating being right here at the end and having all of these set backs.  She needs to be in school.  I need to be working.  Alicia needs to be working.  It's getting hard just to keep up with the bills.  Frustrating.  
We are thankful that Bryson is in good health.  We are thankful that Briley has only common illnesses now and not relapsing.  We are thankful that treatment has worked so well for her.  We are thankful for everyone's support and prayers.  We are thankful for everyone that organized and participated in fundraisers in the past so that we have the resources to fall back on.  We are thankful for the doctors and nurses that take care of all of us.  Most importantly, we are thankful that Jesus died for us and our sins so that we may have the chance to enter the kingdom of heaven when our time on earth is done.  

 Briley getting her breathing treatment, not feeling good at all.

The "no ouch" cream is on her port.  The cream is a good thing!

Larry will kill me for putting this pic on here, but he's great with the kids.  He's having a lot of fun with Briley and Briley's having a lot of fun with Larry!  

Monday, April 22, 2013

4/22/13 Update

I got into trouble for not updating the blog by a couple of people over the weekend.  I'm sorry for that.  A good bit has happened since my last post.

Both kids have been sick.  Mostly sinus infection stuff.  Briley also had an ear infection and is currently being treated for that.  Her fever got as high as 102.6 and we stayed up half the night with her.  About the time we started getting things ready to go to the ER, her fever would drop down.  We also knew that we had an appointment at Cooks the next day, so we waited until then.  

We went to Cooks on Tuesday for a regular checkup.  All of her counts came back good.  Her ANC surprised us a little bit because it was 1040 after being off chemo for 3 weeks.  The doctor assured us that it was ok and that her counts would not normalized for 3-4 months.  So that makes sense why she is sick & running fever for a week with sinus infection and Bryson is able to fight it off in a day.  Just another good reminder of the effects of chemo on the body.  

Briley still has a rash from head to toe.  The doc asked us to try a couple of things, but it's not working.  Alicia thought today that it may be clearing a little bit.  If it doesn't clear up soon, I'm calling Cooks for a referral to a dermatologist.  It's been going on for way to long and she's up half the night itching.  

To say the least, all of this sickness that's been going on for the last couple of weeks have been frustrating.  Briley is missing school, dance, & twirling.   Alicia or I have to take off work, I'm missing some of my school. We know the end is very near and cannot wait for her counts to normalize.  It will get here soon, but not fast enough.  

Thursday, April 11, 2013

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 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.

Monday, April 1, 2013

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.