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!  

Thursday, November 15, 2012

Happy, Happy, Happy!

Before I tell you why we are so happy, I want to first tell you about the video that I've mentioned in the previous post.  I can not get that thing loaded onto this blog!  Sorry.  I've tried and tried.  It is on Alicia & mine Facebook page. I will keep trying to figure out how to get it on here.
Now, it's happy happy happy time!  Briley and I went down to Cooks today for her ortho appointment.  After a round of x-rays, the doc came in and said that both of her bones have completely healed!!!!!  Since she is doing so much better with her walking compared to two months ago, the doc is ready to take the rods out of her legs!!!!!!  Awesome news!!!
We plan to schedule the surgery during Christmas break.  It will be an out-patient thing and she'll be sore for a couple of weeks.  This chapter in our lives will be coming to a close.  All ( I use that lightly) we have to worry about is the oncology side of things after the rods are out.
We couldn't be more pleased.  Thank you God!!!!!!
Alicia and I will find a day to get it done and will let y'all know what day it is.  I figure she could use a prayer or two that day!
We appreciate everyone's prayers and well-wishes and we appreciate the cards from our friends in Haskell!

Saturday, November 3, 2012

Another trip to Cooks

Seeing that I ran into Alice in the grocery store and got in trouble for not updating the blog, I better get that done!
Briley and I went down to Cooks on Thursday for an oncology appointment/checkup.  Briley did not want to leave school (she didn't want to miss recess)!   Anyhow, I bribed her with IHOP when we get to Ft. Worth, so she was happy then!
We arrived at Cooks without any problems and went up to the oncology floor in the clinic.  The child-life gals were still in a halloween mood so Miss Kate snuck up on Briley and scared her!  Briley got her revenge by throwing crayons back at Miss Kate.  So they had a little crayon fight! 
We went back, Briley got weighed in, vitals taken, and back to the room we went.  She decided to scare her doctor when she came in, so Briley hid under a table.  Doc came in and Briley jumped out and said, "boo"!!!!!  They had a good time with that.
Briley's port was accessed and blood taken for labs.  A quick flush and she was done!  She never cried or even as much whimpered once during the needle stick!  I was so proud of her!
Her blood work came back very good.  Her ANC was 1570.  They like to keep it below between 1000 - 1500.  So Briley's nightly chemo dose was increased be just a little.  I hate increasing chemo,  that just means more poison going into her little body, but whatever needs to be done not to relapse.  
We left out of clinic and next stop - IHOP!  After eating, we headed home without any problems.  
We are very thankful to have a vehicle that we can rely on.  Some families are not so lucky.  
Halloween went very well and we had lots of fun!  Briley dressed up as a daisy and Bryson was spiderman!  I will try to post pictures once I get them on the computer.

I made a video of Briley of everything that she's been through.  If I can figure out how to post it on here, I will do that.  Warning:  have some kleenex ready!!!  And turn up the volume!   

Monday, October 22, 2012

Briley's 1st school picture!

Hello folks!  Things have been going very good around here.  The steroids have worn off and things are back to normal for Briley.  Bryson is still enjoying his school.  Briley will go back to Cooks in a couple of weeks for a checkup.  Until then, I wanted to share Briley's very first school picture with y'all!

Wednesday, October 17, 2012

Whew.......What a range of emotions today.  It really has nothing to do with Briley or us, but with other families that we have met while at Cooks.  I don't know how to explain this, but when you have a kid with cancer, it's like joining an exclusive "club" that no-one ever wants to be a part of, but you instantly become connected with others that have traveled the journey.  With that being said, 
My heart is over joyed that tomorrow will be Lianna's very last day of chemo!  We met Lianna and her family when Briley was first diagnosed.  Lianna is a few months ahead of Briley in treatment and was actually bald and in the hospital due to sickness at the time we met.  Plus it seemed like we were always in clinic together or Briley & Lianna were scheduled for LP's on the same days.  We've been keeping up with her on Facebook.  I can't tell you how happy we are that her treatments will end tomorrow!
Now, on the other hand, is Tatum.  We actually met Tatum and her family when she was in for her very last LP.  Come to find out later, Tatum had relapsed.  I can't imagine Briley relapsing, but being so close to being totally done with treatments, I just can't imagine.  I was on Tatum's caring bridge page a while ago.  She just had her first rounds of radiation.  Tatum's mom is a great writer and does a great job with the blog.  I hurt for Tatum and her family.  Tatum is doing good with treatments, but I just can't imagine having to put Briley through everything all over again with radiation and 29 days of steroids.  Her family has to stand behind a thick lead door watching their daughter getting radiation.  The poor little girl is having to fight a tough battle.  Tatum is about as tough as they come and I pray for her & her family that they can conquer the leukemia.  
And then there's Mr. Jude.  Jude and his family live in Wichita and he was recently diagnosed with leukemia.  Their journey has just begun and he is going through the Induction phase, which is by far the hardest phase to go through.  Everything is new, he's on 29 straight days of steroids plus all of the chemo.  Thankfully, tomorrow is the last day of induction and things will get easier!  Alicia and I are always available to answer any questions, not that we know it all, but we've been down that path and hopefully we can ease some anxieties.  He's a tough little boy and I have confidence and I pray that his journey will go smoothly. If you get a chance, please say a prayer for these kids.

The wide range of emotions got me fired up a little today.  So here we go:
Since it's October, we hear so much about pink this & pink that.  Don't get me wrong, I'm all for breast cancer research, awareness, and so fort.  But we try so hard to raise awareness to childhood cancer and most will turn a deaf ear to it.  Trust me, I remember the days before Briley's diagnoses.  I didn't know a thing about childhood cancer.  I didn't know any kids with cancer, but I sure knew plenty of folks with breast cancer, including my mom, two aunts, and a young wife of my co-worker.  All cancer's suck and they are all terrible.   But when you've walked in our shoes, been through what Briley, Lianna, Tatum, Jude, & Gracie has, and have seen other kids die from cancer, it changes you.  It changes everyone that's traveled down this path.  These kids don't have a voice.  They don't have a say.   It's up to us to speak for them.  If childhood cancer had half of the awareness as breast cancer, then we would be getting somewhere.  But it's considered a "rare" disease.  I don't think it's rare at all.  Not when 36 kids will be diagnosed with cancer every day.  Not when cancer is the #1 disease killer of kids.  That's more than AIDS, asthma, something else and something else, combined (sorry, I can't remember the other diseases)!  And unless you've been in our shoes or have listening to any of the 'preaching' I've done throughout the past year & half, then you wouldn't realize just how underfunded childhood cancer research is.  Pharmaceutical companies could care less because there is not a market for new and improved drugs.  Sad but true.
October can have pink.  That's fine.  I'm just about tired of having pink shoved into my face.  From being asked to wear pink to school, or pink out Facebook, or buy pink FD shirts, or watching NFL with pink jersey's.  I can't turn on the news with hearing about pink.  Let me say again.  I'm not at all against raising money for breast cancer.  We've donated to breast cancer causes and still do.  One of my inspirations is my co-workers wife that had a bad go of breast cancer and she was able to conquer it!  I can't say that I'm not jealous of all of the attention that breast cancer gets, because I am.  But, I am for a reason.  I am because I've watched my 5 year old daughter fight this disease for nearly 2 years.  We've watch other kids suffer and die.  Kids deserve to be kids.  Not stuck in a hospital in isolation or confined to the house, not able to go outside and play.  A parent should never have to attend their kid's funeral for any reason, much less because of cancer.  A parent shouldn't have to stand behind a lead door watching through thick glass as their kid lays on a table getting radiation shot into their little bodies.  Lots of folks have done amazing things for us and Briley, but only a few has joined the cause.  I really hope that some day we'll see more gold ribbons out there.  September is childhood cancer awareness month (Yup, I'm a month late).  So let's all wear gold in September and pink in October!  

Monday, October 15, 2012

The steroid regiment is over with!  Briley is back to her normal self.  Her hungry is back to normal.  She's not having any pain.  So, life is back to as normal as it can get.  Thankfully it will be another 3 months until she has to take steroids again. 
We've all had kids taking predisone at one point or another due to sickness.  Take the predisone side effects and multiply it by 10 and that's what it's like taking high dose dexamethasone.  And then add all of the chemo on top of it.  
The reason I say that is, a couple of people got a little frustrated or a little "pushy" with Briley while she was on the steroids and they would say, "oh, my kid has had steroids before when he/she was sick one time so we know what it's like".  Maybe so, but you really don't have a clue what she is going through.  Steroids + chemo + fractures - come on folks.  People soon forget that she is still undergoing treatment for cancer. Something that I hope no one else will have to deal with.
Ok, that's the end of my little rant.  Everything else is going well.  Alicia and Briley are doing good at the school.  We are thankful Alicia was able to be Briley's teacher this year!!!  Bryson is loving daycare!  My school is going well, just ready to be done with it!  We've got some rain!!!!!  That's always a good thing! Thank you for keeping up with us! 

Sunday, October 7, 2012

Sunday night update

Brileys' left knee is really hurting her.  It's not constant, but if she bends it a certain way or if we hit a bump driving down the rode, she will almost cry in pain.  So I don't know if it's the chemo, the steroids, the rods, the weather change, or if it's something totally new.  It kinda sounds like strained ligaments.  I don't know.
Anyway, the steroids are working their magic.  We had frito pies for supper as requested by Briley!  

Saturday, October 6, 2012

A quick update

Usually Briley does fine after her procedure days.  However, this time as been different.  Granted, this has been the first time that she's had a procedure and went to school the next day.  The doctor assured us that it would be fine for her to go to school the following day, but that's proven to be a mistake.  
She done way to much on friday at school.  Alicia called and asked that I bring some pain meds.  Her back and her legs were hurting.  Her back was hurting probably because of the LP & the bandage.  Her legs were hurting from a combination of the fractures, steroids, and the vincristine side effects.  She didn't feel good at all when she got home and she basically laid on the couch all afternoon.  Today (Saturday) has been a tad better.  She still hurt some and had to have pain meds.  This if the first pain meds that she's had since she first started walking after the wreck.  She's never had to have them in the past after a LP.  So, it's been a lesson learned.  Her next LP will be in January.  I don't think she'll be going to school the day after!
Hopefully she's feel much better tomorrow as the chemo leaves her system. Tuesday morning will be her last day of steroids.  The side effects have already started.  Her appetite is increasing by the day! And the roids could be a reason why she is having some bone pain.  It will take 2-3 days for the roids to get out of her system after she stops taking it, so we are looking forward to friday!  It's going to be a rough one between now and then, especially when the roid rages kick in.  Good thing she has her momma as her teacher!!! And I hope everyone else at the school is understanding that she may have uncontrollable outburst at times.  Ugh, I hate cancer.
We appreciate everyone keeping up with us and we thank God for her healing!

Friday, October 5, 2012

One more down, one to go!

That's right, one more spinal tap down and one to go (if my math is right).  Alicia will get me in trouble if she reads this post.  She does not like to look ahead.  She is very grateful for how well things are going now and knows that things could instantly change.  I on the other hand am counting down the days until the end of treatment.  The nurses won't tell us when that will be, but according to the treatment plan, it should be March 30th.  Since she has the LP's once every 3 months, then her last procedure would be in January!  I can't help but to look ahead to when this nightmare will be over with, but at the same time I also know that things could very easily change.  I also know that she still has two surgeries ahead of her.  One for taking the rods out of her legs and another for taking the port out.  But dang it, it's been a long road and I can't help but think of the day when we give her the last dose of chemo!
We got to the hotel around 9:00 last night.  I've said this before, but there's something about staying in a hotel that causes kids to go bonkers!  They finally feel to sleep around midnight and we were up at 6:30 to make a 15 minute drive to Cooks.  We were about 15 minutes late!
Briley got her port accessed with some fussing.  The worse thing about having the port accessed for any length of time is the bandage!  It hurts coming off!  Anyway, blood was drawn for a CBC and Zofran was infused in anticipation of nausea from the chemo she would eventually have.  Her CBC looked good, although her ANC is still too high at 1850.  Her ANC needs to be between 1000-1500.  Platelets & hemoglobin were great!  The doctor didn't want to increase her nightly chemo as we thought since her genetics shows her to be extremely sensitive to the nightly chemo (6mp).  So the chemo (methotrexate) that she takes once/week was increased.  She also started a 5 day run of steroids (dexamethasone) tonight.  They also increased the steroid dosage because of her growth.  We will start noticing her appetite increase in a couple of days along with a little bit of an attitude.  Got to love the roids!
She finally went back to the procedure room.  First she had chemo (vincristine) infused through her port.  This chemo will give her  nausea and make her feel bad.  It also affects her feet by giving her a tingling feeling.  She's had a lot of vincristine throughout her treatment, especially before the start of maintenance.  Even before the wreck, she could not run normally.  We believe it's because the vincristine side effects. 
The spinal tap (LP) was next.  We tried a new sedation (Nitrous) today so that she could drink some before the procedure.  She got to decorate the mask she would be wearing before hand!  And then she got to pick a "flavor" to breath while she had the mask on.  She choose root beer of all things!  The laughing gas worked great and I'm so glad we tried it.  I think it knocked her respiratory down further than it should have at one point, but it was quickly corrected.  The one thing about Nitrous, the effects of it doesn't take long to wear off!  Anyway, about 10ml of spinal fluid was taken out and 10ml of methotrexate of injected in.  They will view the spinal fluid to make sure that no leukemia cells are present.  In this case, no news is GREAT news!
After the spinal tap, she woke up and is required to lay flat for 30 minutes so the the chemo can work it's way up the spinal column and around the brain.  Bryson kept the nurses on their toes, running around and playing.  He doesn't quite understand what is going on with big sister, but he has a good time no matter where he goes!
We left out of Cooks about 11:00 and started home.  Briley didn't want to eat lunch at first, but then she decided that she wanted to go to CiCi's pizza.  So we gave her more nausea meds before we went in and had a good lunch.  Yes, we've learned by trial & error. Always carry nausea meds and always have a puke bag handy.  Lucky, we haven't used the bag in a while!
We left out of CiCi's and the kids slept the entire way home.  
Briley has not been feeling her best tonight.  She's usually up and playing, but she just wanted to lay on the couch and watch tv.  Her back started hurting at the LP site, so we gave her lortab.  She also has a big bandage on her back that must remain on there for 24 hours.  This is the only time that she gets out of taking a bath!
There was more than normal amount of blood on her bandage, so Alicia called the doc that did the procedure and doc said that everything was fine.  It was normal to see some blood.  We've never seen that much so it had us worried a little.  
I can't say enough about Cooks, especially the oncology doctors and nurses.  I hope it's the same at all children's hospitals, but we really feel that they go out of their way for our kids.  The oncology folks see a lot of kids, but we really feel like we are one big family up there.  Briley's doctor was not in the clinic today, but she came over from the floor just to see Briley & Alicia.  She gives Alicia a hug every time she sees her.  Also, nurse Claudia and child life Kate stopped in to see Briley, although they were not assigned to her today.  And child-life Ms. Amy.  What would we do without her!  She is a God-send to that place!  The Cooks oncology floor is just different from anywhere else you go.  You are not treated like just another patient.  We've been to other children's clinics that run kids through like cattle at an auction.  I just can't say enough about the 5th floor at Cooks!
Just a little update on Kelly Livingston.  If your read my last post, Kelly had acute liver failure for unknown reasons.  She is a wife, a young mother of two, and a 3rd grade teacher here in Seymour.  She had a successful liver transplant yesterday and still has a long road ahead of her.  There's a lot of swelling going on so they have not closed her up as of yet.  She should come off of the ventilator tomorrow.  Please keep Kelly and her family in your prayers.  Thank You!

Tuesday, October 2, 2012

Oct. 2nd Update

It's October and things have settled down and things are routine now.  We love routine!   Briley wakes each morning ready to go to school.  She loves school!  Bryson also, although it's hard to get him out of bed in the mornings!  My schooling is going good, can't complain.  I'm gone 3 nights out of the week, so by the time I get home, the kids are already in bed.  I miss seeing them and it's been a little tough on Alicia getting both of them ready for bed by herself.  We'll get through it and it will be worth it in the end!
I'm at home with Bryson today.  He is sick.  He has puss pockets on his tonsils, but he's tested negative for strep.  Just a viral thing that's got to run it's course.  
Briley has her every third month procedure scheduled for this Thursday, 10/4.  She will get a LP (spinal tap), chemo infusion through her port, blood work, and start 5 days of dexamethasone (steroids). It's scheduled first thing in the morning, so we always stay in Fort Worth the night before.  Unfortunately, Bryson will not be able to make the trip this time since he has been running a fever.  Kids that are sick are basically banned from the oncology floor, which is a good thing.  If they are oncology patients with fever, then they will be put into isolation.  Anyway, I will have to keep Bryson home with me while Alicia & Briley go to Fort Worth.  I'm a little nervous sending the girls down there by themselves to spend the night.
A couple of people have ask me recently about the LP's and the purpose of them.  I'll do my best to explain.   Leukemia cells love to hide in the spinal fluid.  Although NO leukemia cells have ever been seen in her spinal fluid, that doesn't mean that they were not there.  It's just impossible to look at every last drop of spinal fluid, as it is impossible to look at every last drop of bone marrow.  Anyway, the nurses will conscious sedate her and the doc will insert a big needle inside a space in her spinal cord.  The spinal fluid leaks out of the needle and into a tube.  I believe they take out about 10cc's of fluid.  The fluid is then replaced with the same amount of chemo.  The chemo will then work itself up the spinal column into the fluid around the brain and hopefully kill any leukemia that it encounters along the way.  
Briley does great during the procedure.  She has been sedated with versed/fentanyl.  This time we are going to try Nitrous Oxide (laughing gas).  The reason for this is that it should work the same as the other, but she will be able to eat/drink before the procedure.  
During the procedure, the child life gals keep her entertained playing games on the iPad.  Thanks to the meds, she doesn't remember anything about the procedure.  She does feel some pain during the insertion of the needle, but it's mostly just mild discomfort the rest of the time.  
We appreciate it if you say an extra prayer for Briley and Alicia for safe travel and that the procedure will go according to plan.  Also say a prayer for Kelly Livingston as she is in acute liver failure for unknown reasons.  She's in ICU at a Dallas hospital right now as the doctors are trying to figure out what is going on.  
Thank you for taking the time to read the updates!  I will do another update after the procedure.  

Tuesday, September 18, 2012

September 18th Update

Wow, it's been 13 days since my last post!!!  So much as happened since then.  We'll start with Briley first and then the walk.
Briley's had a couple of CBC's since my last post.  She actually had one today.  Her ANC is 2100.  That is good, but not really.  With a high ANC, we really don't have to worry about infections being as serious as in low counts, but in the world of chemo & leukemia, her ANC needs to stay anywhere between 750-1500.  Most relapses happen when the chemo doesn't keep the neutrophil count suppressed, so most relapses are seen with kids with high ANC's during maintenance therapy.
Now, we are not thinking that Briley has relapsed.  I don't even want to think about it.  We need to get her ANC down to acceptable levels.  So, if her ANC is still high at her next Oncology appointment on 10/4, her nightly chemo dose will be increased.  I don't quite understand why her ANC has been level since the start of maintenance, with the exception of the wreck, and now it's getting too high on the same dose.  It pains me to give her chemo every night and now we are looking at increasing the dose.  It's just more poison that will be in her little body.  At the same time I realize that she needs it to stay cancer free.
School has been going great for both kids.  Briley is staying busy with this and that.  She has started dance class and will be signing up to join Girlscouts.  She also goes to "church school" on Wednesday nights.  That girl is busy busy.  
Shifting gears a little, the CureSearch Walk went great!!!! Team Briley raised a little over $6,000!!!  Eight teams joined together to raise awareness and funds for pediatric cancer research.  All together, the walk raised a tad over $30,000!!!  That is awesome!!!  I'm am very proud and appreciative of our team and everyone else that came out and supported the walk.  We had 250 folks registered to walk!  The weather was great and we are proud to be involved with the planning committee!  It was a good time had by all!  My legs are still a little sore from the day's activities.  We are looking forward to next year's walk!  I'll leave with a picture of Team Briley at the 2012 Wichita Falls CureSearch Walk!

Wednesday, September 5, 2012

Research Appeal

I'm going to get off subject just a little and talk about the CureSearch walk coming up in a little more than a week and what it means to us and every other family of children fighting cancer.  This is something that we believe in whole-heartedly because we know and we see how little funding is available for cancer kid research.  
To put it best, for every cancer research dollar raised in the U.S., less than a penny of it is directed towards children's cancer.
To put the situation in perspective:  I've mention Dr. Jensen a couple of times here on the blog and on Facebook.  He is a children's cancer researcher from Seattle children's.  He is presently trying to get FDA approval on a new cancer treatment, particularly leukemia, that will cure cancer without chemo or radiation!!!!  He isolates the patient's own T-cell from their own blood, reprograms the DNA to attack the cancer cells, and injects it back into the patient.  For 3 days, the kid may have no worse symptoms other than feeling like they have the flu!!!!  And guess what, they are cancer free!!!
How awesome would that be?!?!?!  Not only would this be only for children, but it would also be used in adults!!!  Dr. Jensen says that he's cured mice, but now want's to cure kids.  
It's a long, lengthy, and expensive process to get FDA approval.  Funding is the only thing holding him back.
Feel free to google Dr. Jensen at Seattle children's and watch the video.  It gives you chills seeing how close he is to having a cure!!!
I can only imagine Briley not having to get all of that poison to be cured.  I want nothing more in this world for this treatment to get FDA approval.  
This is only a small sample of things going on in research.  This brings us to the CureSearch walk.  95% of what we raise for the walk will go into research!  I know all of y'all have done so much for us in these past two years, but if you can, please consider giving to this wonderful charity by joining Team Briley.  Remember, you do not have to be at the walk to be on the team.  Simply sign up as a virtual walker!  I will post a link to the team page.  If you need help, feel free to email me
For those of you that have already signed up, THANK YOU!    It means so much to us that you have given to combat this awful disease called cancer!
A little update on Briley - She's doing great and loving school.  She has a oncology appointment tomorrow at Cooks for count check, port flush, and doctor visit.  Please pray for safe travels and that everything remains normal. I will update again and let y'all know how the appointment went.  If you are ready this blog, I just want to say, THANK YOU!   
 Team Briley CureSearch Walk

Tuesday, August 28, 2012

Briley goes to Kindergarten & Bryson to daycare!

Monday was a very exciting day for all of us!!!!  Briley went to kindergarten!!!!  Bryson also went back to daycare!!!  I (John) also started Paramedic school (not so excited about that)!  Anyway, having the kids going to school/daycare is a huge milestone for all of us!  The kids have not been to daycare but only a handful of times since Briley's diagnoses nearly 2 years ago.  We had to keep both of them out of daycare to help prevent sickness from being around a lot of other kids.  Thankfully, we had the means to keep them home and I think it really helped Briley from getting sick.  She's not out of the woods yet when it comes to sickness.  It still can be very serious since her immune system is suppressed.  But, if anyone knows Briley, she loves school!  She loved going to daycare and she's extremely excited to be starting kindergarten this year!!!  Bryson also started daycare full time.  He likes going now and then, but not quite full time.  He's had a great past couple of days there and I hope it keeps up!
Really, the biggest thing for us having the kids in school is that we can start becoming "normal" again.  I cannot understate that.  It's nice just to be normal.  Yeah, Briley still has to take chemo, make monthly trips down to Cooks, and can't keep up with other kids, but we are now doing what everyone else is doing.
It's going to be nice for me also.  Before Briley's diagnoses, I was working 4 jobs. I had to give up two of them so I could keep the kids at home.  When I was working the truck, then Gloria would keep the kids.  Now I can start working more and get rid of this "house husband" title that I've given myself.  
KFDX channel 3 did another story on Briley going to her first day of school!  I posted a link to the news story below.  Just click on it to watch the story!  KFDX & Ryan has been awesome telling Briley's story and we thank them so much.  It's neat for us knowing that so many people are interested in and praying for Briley's recovery.  
Briley's first day at school went great until about the end of class.  Alicia happens to be her teacher.  So she has a little problem with minding momma during class!  Alicia says that Briley does good in the mornings, but the later it gets and the more worn out she gets, the less she minds momma/teacher.  Hopefully that will resolve itself in time.  But she had a great time.  She jumped out of bed at 6:30 that morning ready to go and did she ever!  
We are grateful to have Alicia has her teacher.  This was done so that Alicia can keep an eye on Briley since she still has several limitations.  The doc doesn't want Briley doing anything but walking.  No running/climbing/swinging/sliding and that kind of stuff.  Well, try to tell that to an active 5 year old in her first days at school!  At least Alicia can maybe keep her from doing the really "dangerous" stuff like hanging upside down from the monkey bars!!!
Most importantly - She's a kid again!!!

Briley's news story

Wednesday, August 22, 2012

Busy Busy

Things are starting to get busy around here.  Alicia is getting her classroom ready.  I'm getting ready to go back to school.  Briley will be starting kindergarten next week!  It's a very exciting time for all of us as you can imagine.  Bryson will also start going back to daycare full time.  He's only been to daycare a hand full of times since Briley's diagnoses, so I'm just a little worried about how he will do with it, but it will be good for him.
Alicia and I are getting busy with the CureSearch walk.  We have registration forms for those of you that rather do it the old way and not online!  
KFDX 3 will be doing one more story on Briley next week.  They will do a story on her progress while at school!  Stay tuned!
Briley's walking continues to improve.  Her dance class will start up next month and she's super excited about that!  She had a CBC done over the weekend and her counts look great!  That's about all I have to report this time, until next, God bless!

Saturday, August 11, 2012

August 11th Update

I've been severely lacking on my blogging duties!  I apologize for that, but no news is good news!
Briley had an Cooks appointment this past Thursday.  Alicia & the kids went to the appointment and then they went to Alicia's sister house over by Tyler for a few days.  So it's just me in  a quiet house.
Briley's appointment went well.  Her ANC was at 910.  It has been slowly declining over the past couple of months and 910 is the lowest it's been since the start of maintenance.  There's no reason for concern at this point, but the doc wants to check her counts again in a couple of weeks.  Below 500 is considered neutropenia, but I imagine that they will withhold chemo or change dosing if it gets below 750.  I guess we'll see what it is in a couple of weeks.  Her platelets & hemoglobin were both great!
Briley's walking has been improving slowly.  She still has a noticeable hitch in her step.  Since we are around her all the time, it's hard for us to notice how much she has improved walking over the past couple of weeks, however, other people that doesn't see her often can really tell how much better she is!  It's been really good hearing that!
She will start school coming in less than a month!  We are excited and scared for her.  She won't be able to play like "normal" kids do.  I don't know how that will affect her socially.  I hope that her classmates will rally behind her and not leave her behind.
The loss of Gloria is still heavy on everyone's heart.  Alicia seems strong on the outside, but really, she's still trying to cope with the loss.  I think the same can be said with all of the kids.  It's definitely been an adjustment.  Glenn is still having a rough go of things.  Gloria was such a presence in everyone's life, from her husband, to the kids, grandkids, her mom, brother, and sister, and people in the community.  One thing we realize is that she's not missing us.  She's rejoicing with the Angels in Heaven. She was an angel to us here on earth and I can't imagine that she's anywhere else but with the Lord.  Death is terrible for us here on earth, but live your life right, obey God's commands, and believe, then death isn't so scary after all.  Our goal in life should be to do everything possible to make it through the gates of heaven.  This earth is only temporary.  Heaven is eternity.  We just have to get there!  Once we are there, then oh-boy!!!!!!  We've made it!!!!!!  That feeling wouldn't even come close to comparing to winning an Olympic gold.  It will be so much bigger than that!  We just got to do what we can here to get there.
Ok, I'm done preaching.   Here is a reminder.  The CureSearch walk is about a month away, Sept 15th.  If you've been thinking about signing up or donating, now is the time to do it!  Go to and click on the Texas on the map.  You will then see the Wichita Falls walk and click on it.  Then you will see Team Briley.  You can click on it to join our team or you can make a general donation.  Alicia & I have been on the planning committee for a while now.  This is something near & dear to our heart as 94% of the money raised will go to research and education.  I can tell you that there are some exciting research out there that the COG is partially funding that will cure kids with cancer WITHOUT chemo!  And this is only a small part of what Curesearch & the COG is doing!  Please think about donating to this wonderful cause.  If you have any question, please feel free to ask and I'll do my best to answer them!  
We appreciate each and everyone of you that takes the time to get on the blog and reads my gibberish.  

Wednesday, July 25, 2012

July 25th Update

Yes,'s been 10 days since my last update.  I will apologize for that now!  It's just been a little busy around here.
Briley's walking continues to slowly improve.  She still has a very noticeable limp when she walks, but that is to be expected.  The news crew stopped by last week and aired an update story on Briley this past Monday.  I will post a link to the story below.
Alicia and I went to a Rangers game with a couple of friends and without the kids!  This has been the first time both of us has been without the kids since the wreck and the first time the kids have stayed the night without at least one of us since last June.  It was nice to have some time for just the two of us!  The kids went to daycare and they loved it!  Briley more-so than Bryson, but they did good.  In fact, we thought Briley would be excited to see us after being gone for two days, but as soon as she saw Alicia come through the doors at daycare, she started crying.  She did NOT want to leave!!!!  She was having too much fun playing with the kids and doing projects!   Her legs were tired after two days of daycare and she's struggled with walking a little bit yesterday and today.
We are blessed that Briley has been progressing the way she has been.  She's been right on track in her recovery.  That's good, because things are about to get a little hectic and tough.  I'm starting Paramedic school this fall.  I was signed up and ready to start the school before Briley was diagnosed with leukemia, but of course, I had to drop the class.  I'll be gone every Monday, Wednesday, and Friday nights to class in Wichita for 2 semesters!  It's going to be rough, but ready to get it over with.
Briley has an oncology appointment Aug. 9th.  The nurses and doctors will be very excited to see her walking!  We appreciate everyone's support. 

Sunday, July 15, 2012

July 15th Update with Exciting News!

Thursday morning, we went to a the 7th Annual Ian Surratt Memorial Fishing tournament.  It was put on for some cancer kids from Cooks.  I believe there were about 20 kids fishing.  We first met at the marina on Eagle Mountain lake and had breakfast.  We are then matched up with some local anglers that fish the bigger tournament trails in the area.  We were paired with Monte and both kids were given a fish in pole, tackle box, and shirts.  They couldn't wait to get out on the water!  We first started fishing for sand bass.  Monte found them on the electronics, but they weren't feeding.  After a short time trying to get one to bite, we decided to find something easier to catch.  We found a little place by a different marina and started catching perch, and a lot of them!  Bryson was a little tired and cranky from staying up late and getting up early, but his attitude changed when he started catching fish!  We probably caught over 20 perch, and then it was time to head in.  Lunch was waiting for us when we got back and plaques were giving to each family and boater.  I couldn't be more proud of the plaque!  It was a great time and I'm differently looking forward to it next year!  And Bryson slept for 4 hours after leaving the lake!  

I guess the fishing trip did Briley a lot of good.  Here's the big news - she is walking WITHOUT assistance!!!!!  She no longer needs her walker or wheelchair.  Her & Alicia were in Alicia's classroom on Friday when Briley took on step without holding on to anything.  I guess something clicked, and she took off!  Granted, she's still very unsteady on her feet and walks a little bowlegged, but she's walking on her own!!!!   She is so proud of herself and that night, she walked every where around the house.  It was such a good sight to see and very emotional for Alicia and I.  Even little brother was excited for her!
As faith would have it, the steroids that she's on is affecting her walking.  Not only does the steroids give her an attitude and an appetite, it causes bone pain.  Especially in her legs.  So the stinking steroids have slowed down the walking process just a tad. Her last dose will be tomorrow morning and it will take a couple of days to completely get out of her system and she will be back to her normal self.  She always craves something different when she's on steroids.  This time it's spaghettios!  
We will go back to Fort Worth (again) on Thursday for her ortho checkup.  I hope and pray that the doctor will be please with Briley progress.  
There will be a blood drive here in Seymour this coming Tuesday at the Portwood Pavilion.  I encourage everyone to give blood if you are able.  Briley has had numerous blood transfusion and the importance of giving blood has really become apparent after her diagnoses and after the wreck.  Giving blood really does save lives!  Thank you for keeping up with Briley's progress!  

Thursday, July 12, 2012

LP/Fishing Tourney

We are back home now.  It's always good to be in your own house, even though we are being invaded by crickets! 
I talked briefly about her procedure yesterday, but I wanted to expand on it just a little.  The spinal taps, or otherwise known in "our world", as Lumbar Punctures (LP for short),  are done in accordance with the vincristine (chemo) and dexamethasone (steroids).  These rounds are called vincristine/dexamethasone pulses.  Under standard protocol, these are done once/month.  Thanks to the COG research trial she is under, they come around once/ 3 months.  
During the LP's, they take out 10cc's (I think) of spinal fluid (CSF) and replaces that same with Methotrexate.  Leukemia cells like to hide in the CSF.  Although no leukemia has every been found in Briley's CSF, it's done for precautionary reasons.  Just one cell can cause a relapse.  That's the reason for 2.5 years of chemo.  
The dexamethasone is taken 2mg twice a day for 5 days during these pulses.  During the first phase of treatment, called induction, she was on 29 straight days of the steroid.  This was when she gained all of that weight and couldn't walk.  The steroid in itself kills off a lot of the leukemia cells.  The five days of it isn't bad, but she will start having cravings and a little attitude towards the end of it.
She also takes another chemo called 6mp every night.  This chemo must be taken on an completely empty stomach.  We are in a bad habit letting the kids eat a snack right before bed, so Alicia sets her  alarm for 2:00 in the morning, gets out of bed, and gives Briley her chemo. This has been going on for nearly a year!  We're use to it now!  I know there's easier ways to do it, but that's just how we (Alicia) does it!
Briley also takes an oral form of the methotrexate once/week, except for weeks that she's getting an LP.  
And there's one more routine med.  She takes Bactrim 3 days a week, twice a day.  It helps prevent her from getting a certain type of pneumonia that cancer patients are prone to.
Then there's the as needed meds.  2 types of nausea meds, pain meds, zantac (because of the steroids), laxative (because of the vincristine).  
I kinda got off of what I intentionally wanted to talk about (her latest procedure and the fishing trip), so I will update on that tomorrow.  My goal is to eventually print all of these blogs and save them for Briley when she gets older.  That way, if she ever wanted to look back and read what she's been through, we would have something to let her do such a thing.  
Even though she's in maintenance, she still takes a lot of meds.  I know that there will be an end one day and it can't get here fast enough.  Until then, we appreciate everyone's continued thoughts and prayers!  

Wednesday, July 11, 2012

Briley's Appointment

Just a quick update.  Briley's appointment/spinal tap/chemo went great today.  Her counts were good.  ANC - 1180!  It has leveled out again and we are happy with that.  Both her hemoglobin & platelets were great also!  
The spinal tap went good.  They no longer put her completely out. Instead, they use a mix of versed/fentyl for sedation.  She's pretty funny when the versed takes hold!  She never once complained about the needle in her back, other than she asked the doc what he was doing back there.  Miss Amy, the child life specialist, does a great job keeping her busy with games on the iPad when the procedure is being done.  
I guess no news is good news.  They take the spinal fluid out and look for leukemia cells.  They replace the same amount of fluid that is taken out with chemo.  Then she got another round of chemo through her port.  So far, so good.  We've kept her on nausea meds throughout the day.
We will wake up in the morning and head to Azle for the fishing tournament.  I'll will post more about that and the trip has a whole later on.  Right now, the kiddos need to get to sleep because 6:30 will come early for them!

Friday, July 6, 2012

Briley is back from camp. Six Flags

The 4 of us left out at 5:30 yesterday morning to Fort Worth for camp Sanguinity.  The camp is for kid's getting treatments at Cooks for cancer and other blood disorders.  The siblings also get to go, but Bryson is too young this year.  Alicia has had a lot of anxiety about letting Briley go and has worried and worried about it.  But in the end, Briley had a blast and that's what counts!
We dropped Briley off at Cook's and saw her off on the big bus!  She was so excited to ride a bus!
Bryson was sad because he couldn't ride the bus with Briley.  We decided to have a Bryson day.  Just to spoil him a little bit since Briley gets most of the attention and there are times that he feels left out.  So off to Six Flags we went!
Now, I almost turned around and left when we saw how much it cost just to park and get tickets.  Unreal.  But, we were there and he needed this time together and have fun.
We had no idea how he would react to the rides.  We tried out the log ride first.  He loved it!  So we went down it 2 more times.  Then the mini mine train a couple of times.  He was getting brave, so we went to the mine train.  That one started getting a little big for him and he didn't like it as much.  We ended the day on the boat that goes way up and splashes down.  Alicia didn't want to get wet, so him & I got the very front seat for the ride.  We splashed down, soaking wet, and he loved it!  He wanted to go back and do it again, but we were out of time (and exhausted).  We noticed a pattern.  If it involved floating on water in a boat, that was the ride for him!  That's my boy!  He's our 3 year old daredevil! 
We left Six Flags and Bryson was sound asleep before we got out of the parking lot!
We ran by Walgreens to pickup a chemo refill and then to Cooks to pickup Briley.  She came off the bus just a smiling and so were most of the other kids (that were awake)!  They all had a blast!  It was great sight to see!  These kids go through so much and it's cool that they get to share a fun time together and get to see each other at some place other than the clinic!  Briley said she loved swimming and the nature show!  She told us of a big snake that they had, but she didn't touch!  She love the lizard the most!  And she had a bag full of crafts they worked during the day.  Each kid was paired with an adult volunteer for the day. That made Alicia feel really good about letting her go, and she's glad that she did!  Hopefully Alicia will be able to volunteer next year, it would be right up her alley!  
Alicia and I are both sore and exhausted, but it was well worth it for both kids to have a great day!  We haven't been able to take a vacation for the past 2 years, but the rangers/six flags/camp/fishing trips are making up for that and it's nice that Cooks does these things for their kids.  
Our next trip to Cooks will be next Tuesday.  We will spend the night so we'll be there close for her 7:15 appointment on Wednesday.  It is the dreaded procedure day that comes around every 3 months. She will have the spinal tap with chemo injection.  Chemo through her port.  And start the 5 days of steroids.  Joy.
We will stay a second night and fish the kids tournament at Eagle Mountain Lake with the pros on Thursday!  I hope the side effects have passed from the previous day's procedure by then and we can all enjoy a day on the water!  
I think she only has 3 spinal taps left until she's done with treatment!  Awesome!  I'd like to thank the folks in Haskell for following along and sending cards.  Thanks!!

Monday, July 2, 2012

Rangers Game

The big day was upon us on Saturday!  Rangers game, here we come!  Mom and dad rode with us.  They met aunt Dewanna and uncle Gary at the hotel.  We got to the gate on time and went upstairs to the Diamond club.  We met up with the Sunshine Kids Foundation folks, got signed in, and they had tons of pizza to eat.

After eating, the Ranger's 2nd baseman, Ian Kinsler and his wife, Tess, visited with every family.  They had a bag full of goodies for the kids.  There were 21 cancer kids at the event.  

All of the kids gathered around the podium and took group pictures.

After the events from upstairs, Alicia, Bryson and I went to our seats while the Sunshine kids went downstairs to go out on the field.  A child life specialist took Briley down there.  Briley was excited to go, until.......

Captain, the ranger's mascot, walked up behind her and autographed her shirt!  She didn't want anything to do with anyone dressed up as a big horse and she especially didn't want that horse writing on her shirt!  So she cried the whole time on the field.  You can kinda see her on the right in the picture above.  She is being held by the child life gal.  

The group of kids on the big screen!

After the on field presentation, Briley was brought up to our seats. As soon  as she saw Alicia, she broke down crying, "mamma!!!! he wrote on my shirt!!!!"  We had a good laugh, and she calmed down and settled in and watched the game.

The Rangers beat the A's, 6-2!  We had a great time.  It was nice getting away as a family and having mom & dad go with us.  The following picture didn't turn out great, but it's a picture of a bald-headed cancer kid sitting in front of us watching the game.  This is what it's all about!

Briley is doing much better the past couple of days with her walking.  She is able to stand for a short time without holding on to anything.  She is walking more and more with her walker.  I think the swimming has done a lot of good.  She will be going to cancer camp on Thursday and we may take Bryson to six flags while she's away.  I know she will have a great time there!  Thanks!

Wednesday, June 27, 2012

Briley in the NEWS on KFDX

Briley Hostas Takes Next Step , is the latest news coverage on Briley's progress.  All coverage stories are located on the right of the blog.

Tuesday, June 26, 2012

Walking is slowly getting better

Briley is walking a little more each day, but it's still not what I anticipated her doing.  We've have so much much going on in the next few weeks and I guess I'm just wanting things to go faster than what they are.  I have to remind myself, patience!  
She wants to walk!  So that's a good thing!  We don't have to force her to get up and walk.  The more she walks, the faster she will get back into the swing of things.  Her legs tire out quickly.  By the afternoon, her legs are really sore and she doesn't walk.  We try to give her as little pain meds as possible, but we may need to step it up a little just to get her back on her feet a little more.  
We are going to Alicia's uncle Johnny's house tomorrow to let the kids swim in his pool.  It will be great exercise for those little legs!  And fun too!  
There are noticeable differences in both of the kids since the wreck.  Briley is now scared of the dark.  Never has been before, but it's bad now.  She also keeps asking why Nanna didn't see the truck coming and why they pulled over.  Bryson doesn't want to be separated from Alicia or I.  He always loved going out to my mom & dads, but he no longer wants to.  He asked Alicia last night if he could go to Nanna's house when she got home from Heaven.  I hope things improve eventually, and they will.  
I'm just about ready for things to get back to normal.

Sunday, June 24, 2012

Info Needed

Someone sent Briley a barbie.  You had written on there that you had a broken leg when younger, but just one and Briley must special.
If you are this person, we need your address!

Saturday, June 23, 2012

A new News story

Here is a link to the news story that was done today.  I can't figure out how to post the link with the others, but Audra will when she gets back to town!  Anyway, I hope this works for now.  I will try to update more tomorrow on Briley's progress.  Once again, thank you KFDX!
Briley Hostas Takes Next Step texomashomepage.comBriley Hostas has been fighting leukemia for the last few years. Then last month, she was in a horrible car wreck, but Briley is moving forward.

Thursday, June 21, 2012

Post Appointment Update

We left out this morning, tired, or at least I was.  Only 4 hours of sleep last night.  grrr
Anyway, a miracle happened this morning.  We made to Cooks right on time!  That never happens!
First stop at ortho.  Briley had x-rays of both femurs.  Her surgeon came in and said that the bones were healing nicely and the rods are were they are suppose to be.  Soooooooo, she doesn't have to wear the braces anymore.  And the big news is, she is allowed to start putting weight on her legs!!!  Time for her to start walking again!!!! (more on that later).
All four incisions looks good.  The bump on the side of her left knee is actually one of the rods.  And it's swollen more than the other because of that rod irritating the surrounding tissue, but it's nothing to worry about.
They called over to Cooks home health for a walker and we were done there.  Alicia and I were very excited to hear the wonderful news!
After ortho, up to the oncology floor we went.  We first got to meet a parent who Alicia has been talking to on Facebook through a cancer page.  Her 3 year old daughter has neuroblastoma and still has some tumor left on her spine.  She's a precious little girl named Maddie.  Please say an extra prayer for Maddie that she will win the fight against cancer.
Briley went back for a CBC & port flush.  All of her counts looked great!  Her ANC is 1400!  Hemoglobin was 11.4 and platelets were 200,000+!  All of this is good news!  It looks like her counts have stabilized again!
Next month, on the 11th, she is scheduled for a lumbar puncture with chemo injection & vincristine through her port.  She has these done once/3 months thanks to the research that she's on.  Otherwise it would be once/month.  
She usually doesn't feel good after the procedure, but perks up the next day.  I really hope that this round doesn't affect her much since we have the kid's fishing tournament the next day!  We'll play it by ear and she how she's feeling that morning of the tournament.  We'll carry an extra zofran or two on the boat!
Really the only thing that has me a little worried about the tournament is from a sunburn!  She takes methotrexate once/week by mouth, and she will get it injected into her spinal fluid the day of her lumbar puncture.  One of the side-effects of methotrexate is sensibility to the sun and sunburns can be a big issue.  I'm sure Alicia will smoother on the sunscreen!
Ok, back on track.  After her appointments, we drove over to Pappadeaux's for lunch.  Good stuff!  Briley just had to eat some gator!
Then we decided to take the kid's to the Ft. Worth zoo.  They enjoyed it very much!  Bryson was super excited and was very good.  He agitated the gorillas  and the big croc wanted him for a snack!  It was so humid there today, it was almost miserable, but we didn't care.  The kids were having a blast!
Then it was time to come home.  Both kids crashed within minutes of leaving the zoo.  They were worn smooth out, as is their daddy!
We made our way home without any problems and couldn't wait to get Briley standing up and walking!  We adjusted her little walker to fit just right and then it was the moment of truth!  
The truth is - it's going to be a long road.  It didn't really hurt her much, but her coordination is out of wack and her legs are very weak.  She was not able to stand on her own.  I stood behind her and supported her as she tried to take some steps, but that didn't work out to great either.  Especially that left leg.  It's lagging behind a little.  The main thing is, she tried.  She tried very hard and wanted to do it!  And it will come with time.  We will work with her as much as we can get by with and get her going again.  It amazes me how the simple task of walking that most of us takes for granted can be so hard for others.  I'm proud of her and we'll keep moving forward!
Briley was also able to take a real bath tonight!  We've been laying her on the kitchen counter and washing her hair in the sink and giving her a sponge bath.  So being able to sit in the bathtub again was a big deal!
I think the biggest surprise of the day has been Bryson's reaction to big sister trying to get back to doing normal again.  He was rooting her on and hugging her when she was trying to walk.  And then he was so excited for her when she was able to take a bath!  He's love for her poured out tonight!  He was one proud little brother!
All in all, today was a great day!  We were blessed in so many ways and I want to thank each of you for praying for Briley.  I think many prayers were definitely answered today!  Words cannot express the gratefulness that we have from the support that we have received.  Thank You!