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!

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 jhostas@yahoo.com
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

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

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!

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 www.curesearchwalk.org 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.  

July 25th Update

Yes, yes........it'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. 
http://texomashomepage.com/fulltext/?nxd_id=190812
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. 

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!