Thursday, December 27, 2012

Results from today

Once again, the kids think spending a night at a hotel gives them a pass to stay up most of the night!  Finally, they went to sleep around 12:30 and they did not want to get up this morning!  I happen to run into Stan Decker this morning in the hotel hallway.  Stan is Addison's dad, the Seymour girl I mentioned in the previous blog.  I had no idea they were there, especially in the same hotel and same floor as us!  
We arrived at clinic and Briley's port was accessed and blood drawn.  Her platelet count rose to 85,000!  Much better than last weeks counts.  Hemoglobin was 9.1 and ANC 800.  
Briley's Dr. was pleased with the counts.  However, doc said there has been a ton of kids over Christmas break with the flu.  She kind of suggested pulling Briley out of school as a homebound student until flu season has passed.  I understand the reason.  I mean, a sinus infection has kept her down for nearly a month.  What would the flu do?  We'll pray hard about the decision and go from there.  At this point, I don't know what to do.  I really don't want to take her out of school that she loves so much.  She's already missed out on so much in her young life.  I'm just ready to get all of this over with.
The spinal tap went very good and once again, she was a pro at it!  It's kinda sad that she was looking forward to it!  Or at least she was looking forward to the bubble-gum flavor that she would be breathing in her mask.  She doesn't ever remember the procedure itself thanks to the laughing gas.  Then she got the vincristine chemo afterwards.  She will start 5 straight days of those dang steroids again.  Fun Fun.  
After the spinal tap, Briley of course wanted to eat at CiCi's pizza, so that's where we went!  Both kids slept all the way home and we are glad to be here.
We'll go back to Fort Worth on Sunday for rod removal on Monday.  It will be really nice to be done with all of the orthopedics stuff.  Thank you for all of the support and prayers!

Wednesday, December 26, 2012

We made it!

All 4 of us made the trek from Seymour to Fort Worth today safely!  After Christmas day's blizzard, I had my doubts, but the roads were mostly clear all the way with the exception of a couple of stretches of some ice on the roads.  
Briley has her spinal tap scheduled for 8:00 in the morning.  I'm praying that her platelet count has at least started increasing.  I will update tomorrow after the procedure on how things went.  Thanks!

Monday, December 24, 2012

Christmas Eve Update

Merry Christmas to all!!!!   I do have some good news to report on Addison, the 9 year old that I mentioned in the previous blog.  All scans were clear, the lymph nodes were clear, they were able to get all the cancer out with surgery when they cleaned up the border.  So that's really great news and we are very happy for her and her family!  
Briley is still under the weather.  She ran a little fever yesterday and still has been really snotty with a productive cough.  We've had blood work done every week since she's been sick and she had it done this morning also.  Her platelets have been decreasing ever since she's been sick and on the antibiotics.  Right now, her platelets are hanging around the 55,000 mark.  At 50,000 they will withhold chemo.  Her platelet count has to be over 75,000 to have surgery.  
Alicia called Cooks on Friday to get some answers on why her platelets are dropping.  Unfortunately, Alicia wasn't able to talk to the nurse or doctor that's familiar with Briley and she wasn't able to get any answers.  We did read online that the antibiotic Briley is on could lower platelet counts considering she's on chemo.  So, we made the decision to withhold her antibiotics and hopefully we don't get in much trouble with the doc.
I really hope the counts increase before her surgery on the 31st.  If they don't, they will either delay surgery or she will need a platelet transfusion before hand.  I just hope and pray that it will increase on it's own.  
All of her other counts look great!  Her ANC is 1600!
Briley is scheduled for a LP this Thursday.  I canceled the hotel room for Wednesday night because of the impending winter storm we're suppose to have tonight.  I really hope we'll be able to make it down there and get some answers this week.  It will be a mess trying to reschedule for next week when she's already scheduled for rod removal.   
We're looking forward to Christmas, but ready to get this month over with!  
I hope everyone has a great Christmas with family and friends!  Thank for your support throughout this year and we're really looking forward to 2013!  

Monday, December 17, 2012

Another fever, ER visit, Special prayer request

I'm a few days late getting this on here.  Briley came home from school running fever (again) on Thursday.  So this was twice, a week apart, that she had a fever.  This time, her fever was up around the 102.0 mark.  I put a call into the on-call oncologist and of course they wanted her to go up to our ER for a round of antibiotics through her port.  
Unfortunately, the annual SVFD hamburger feed and Christmas parade was that night and Briley was suppose to be on a float with her twirling class performing.  She had to miss being there because she was in the ER.  For the first time in a long time, I became very frustrated with cancer.  We've always tried to stay positive as much as possible, but this is really starting to get old.  She has missed out on being a kid so much throughout all of this.  As my frustrations start to mount, I then learn of the school shooting in Conn.  Then things don't seem so bad in our lives.  Remember to keep the families affected by the shooting in your prayers.
I ended up getting sick over the weekend as Briley started getting better.  Briley and I both have terrible issues with sinuses.  I'm better now and Briley is also better and she's back in school today. Her platelets were a little low last week, so we'll get her counts checked again this coming Thursday.
We are looking forward to Christmas break, but it's going to be a busy one.  We will spend the night in Fort Worth on the 26th for Briley's LP procedure on the 27th.  And then again spend the night on the 30th for rod removal on the 31st.  Honestly, I'm looking forward to spending time with family over the holidays, but the upcoming procedures are in the back of my mind.  I'm ready to get this month over with!
I'm requesting a special prayer for a special little girl.  A 9 year old Seymour girl, Addison, was recently diagnosed with Melanoma.  This is extremely rare for a kid so young to have skin cancer.  Alicia taught her in kindergarten and her parents have been by our side during Briley's treatment.  They will be at Cooks for the majority of this week getting answers.  She will have scans done today, meet with the surgeon tomorrow, and will have surgery on Wednesday to remove a larger area where the cancer was found.  We are praying that the cancer has not spread and is localized to the one area and that the surgery on Wednesday will get it all.  Please lift her up in prayers as you have done us.  I will keep you updated on her as answers become available.   Thanks!  

Saturday, December 8, 2012

Spam comments

We are getting a lot of spam comments that are very offensive. I can't figure out how to delete them or block them, but I will ask someone that knows more about it than I do. I apologize for this and will have it fixed as soon as I can.

Friday, December 7, 2012

Cooks Visit

Briley and I traveled to Cooks yesterday for her regular scheduled appointment.  The night before, she started running a temp that stayed right around 101.0 - 101.5 mark.  She cannot have tylenol because that will only mask a possibly serious infection.  Anyway, we came ever so close to going to the ER for antibiotics, but as soon as we get ready to go, her temp would drop back down below 101.  We also knew that she had an appointment the following morning at Cooks.
While at Cooks, she had her port accessed.  Blood drawn for CBC & cultures.  The doc sent her downstairs for chest & sinus x-rays.  Then we went back upstairs to the infusion room for a round of rocephin.  Her ANC was 738, about the same as on Tuesday.  The chest x-rays were clear, but the sinus x-rays showed a sinus infection.  So all of this for a sinus infection!
This was a very good reminder for all of us that she's still very much fighting cancer.  Even something as simple as a sinus infection can have very serious consequences if not treated right away.  She is now on 21 days of antibiotics.  
Her temp rose again last night to 101.5, but since it's been less than 24 hours since her rocephin dose, she was able to have tylenol that dropped it back down.  So far today, her temp has remained under 100.0. She doing a lot of coughing and nose is constantly running.  I think the crap in her sinuses is trying to break up.
Thank you for all of your prayers!

Tuesday, December 4, 2012

Fever going down and news on Bryson

Well, it's been a while since I've blogged three days in a row!  Not for sure if that's a good thing, but I wanted to keep everyone updated on the kids.  
We took Briley to the local clinic today for her fever.  Although it came down some since last night, she needed to be seen.  She was still running a temp around 100.0 and she had count check, blood cultures, and a flu swab.  She tested negative for the flu!  That's great!  However, her ANC was lower than we want it at 740.  Ideally, we want to keep it right around the 1000 mark.  So she's not neutropenic, but she's getting there.  750 is the cut off, so after a call into her oncologist, she was given a shot of rocephin.  She barely missed spending a week admitted to Cooks.  If her temp was still as high as last night, she'd be at Cooks.  Thankfully she's not and her fever continues to drop.  It was 99.0 at last check and she's really felt great this afternoon!  I'll keep her home again from school tomorrow.
Now on to Bryson.  Cooks called Alicia this morning to confirm the MRI and asked for a $1000 payment up front.  What!?!?!?!?!  $1000 bucks for a MRI?  Crazy!  Come to find out, we have not met our family deductible for the year, just have met it on Briley (in 3 months time).  So, after a little online research, Alicia asked the local pediatrician, Dr. Chu, about doing a sonogram on Bryson's leg.  She totally agreed, so we took him to the Seymour hospital for the sonogram.  Now getting Bryson to lay still was a challenge, but we somehow managed to hold him down long enough to get it done!  We will get the report tomorrow, but by looking at it, it looks like a fluid filled cyst!!!!!  That's great news!!!!  The last thing we wanted to see was a solid tumor mass.  Alicia and I can breath a little easier now.  Hopefully, because of this, we can cancel the MRI scheduled for Thursday.  After looking at a few things, the cyst should disappear on it's own in some time.  Surgical removal would only be required if it started causing pain.  We'll know more about it after tomorrow, but we are relieved.  
We appreciate the prayers!!

Monday, December 3, 2012

Briley has a fever

Briley came home from school today running a fever.  It's been constantly hanging around 100.7.  For a short time, the fever got as high as 101.6.  
Times like this it hits us again that our daughter is a cancer patient.  If her temp gets up to 101.5 for any length of time, we have to take her to the ER to get her port accessed, blood work done, counts checked, and antibiotics started.  The ER doc would then call the on-call oncologist at Cooks and go from there.  If she is neutropenic and/or blood cultures come back positive, then she would have to go down to Cooks for an automatic week stay in the hospital.  
She cannot have tylenol or motrin for her fever as this will only mask it.  There's been the stomach bug and flu going around school, but she hasn't had any stomach issues.  Hopefully it's just a 24 hour bug.
Briley has an oncology appointment on Thursday.  If she's still running a temp on Wednesday, we will have to call them to see if they want her to come.  The last thing they (and we) want is to infect the oncology patients with what she has.
Bryson will also have an MRI on his leg Thursday also.  I really think it's a cyst, but only an MRI will tell us for sure.  Just want to be safe.  At least both Briley and Bryson's appointments are on the same day!  That will save us a trip!

Prayers for Bryson

We discovered a lump behind one of Bryson's knee on Saturday.  I took him up to the doc this morning and he is being scheduled for a MRI.  We hope and pray that it's nothing, but rhabdomyosarcoma does cross our mind and is something that we have to worry about.  
Briley has an oncology appointment this coming Thursday, so Alicia has decided to take off of work and we'll take Bryson with us and let Briley's doctor glance at it.  Please be nothing more than a cyst.
I hope everyone had a great Thanksgiving.  Things were a little different for us this year.  Gloria and maw maw are no longer with us and my Grandma was put in the nursing home.  So much has changed this past year.  We gathered in Munday for a feast, but had no gatherings on my side of the family.  That's the first time that I know of neither my mom side or dad's side has not gathered. But I did cook a good pot roast for the 4 of us on Thanksgiving day!