We are proud to announce that Team Briley will participate in the 2014 CureSearch walk at the Texas Motor Speedway in Fort Worth on April 26, 2014. This is the same walk that we attended a couple of years ago in Wichita, but we are going to Fort Worth this year.
CureSearch is very important to us. 94% of the money raised will go towards pediatric cancer research. There is a desperate financial need for pedi cancer research since the government has cut some funding for it. Also, very little money is directed to the kids by the bigger name fundraising societies.
CureSearch helps fund the Children's Oncology Group research trials. Briley has been and still is under these trials. Thanks to the trial that she was under during the maintenance phase, she received a 1/3 less chemo! That's huge!
Please consider joining Team Briley at the walk. If you are unable to make it to Fort Worth, then no problem! You can sign up as a "virtual" walker or you can make a general donation! Here is the link to Briley's walk page where you can sign up:
http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1079938&lis=0&kntae1079938=E4E816BA74B24719B74C40C3E3033C01&team=5834991&tlteam=0
Update on Briley. She's doing very well! She is still going to Cooks once/month. Her next appointment on April 1st will mark one year off treatment. She will have numerous blood work done to make sure everything is working the way is should. After that, her appointments will be once every 2 months! That will be nice. We appreciate you!
Sunday, March 9, 2014
Tuesday, January 21, 2014
Today marks 3 years since diagnosis
It was 3 years ago today that we were told that Briley has leukemia. I'll be perfectly honest with you, it seems much longer than that. So much has taken place over those three years. Both good & bad. We will always be reminded by the scars on her body and by the lasting effects of the chemo itself. However, we will continue to rejoice that she is here with us! She is back to being a kid! She has not been sick this year! Appointment days have been the only school days that she has missed this year and we are extremely grateful for that.
So many other great things happened in 2013. Foremost, she took her last dose of chemo on March 30th. Then, we were blessed by Make-A-Wish and spent a week in Orlando, Fl at Give Kids the World, Disney World, and Universal Studios. And in August, Briley had her port removed!
These past 3 years have been a testimony to God's healing. There's no doubt in my mind that He helped her get through the fight for her life.
In the same breath, we have known and seen so many other kids that have fought the battle until the very end and earn their angel wings. So many other kids have serious side-effects from chemo and radiation that they are left with severe disabilities. We will never understand the reasoning for all of this but we will continue to spread awareness and give the kids a voice.
We have also been blessed by a community and many others that came together for her. There's no way we could have done it without the support. To date, this blog has been viewed over 109,000 times! We appreciate everyone that takes the time to get on here and read my terrible writing!
Currently, Briley is doing very well. She started physical therapy this month to strengthen her legs and has been doing well with it. She still has monthly Cook appointments and will eventually have appointments every other month after March. There is not much to else to report and that it a good thing!
There is a CureSearch walk in Fort Worth in April. We plan to have Team Briley there this year and I will post more details as they become available.
Once again, thank you for everything you have done for us these past 3 years!
So many other great things happened in 2013. Foremost, she took her last dose of chemo on March 30th. Then, we were blessed by Make-A-Wish and spent a week in Orlando, Fl at Give Kids the World, Disney World, and Universal Studios. And in August, Briley had her port removed!
These past 3 years have been a testimony to God's healing. There's no doubt in my mind that He helped her get through the fight for her life.
In the same breath, we have known and seen so many other kids that have fought the battle until the very end and earn their angel wings. So many other kids have serious side-effects from chemo and radiation that they are left with severe disabilities. We will never understand the reasoning for all of this but we will continue to spread awareness and give the kids a voice.
We have also been blessed by a community and many others that came together for her. There's no way we could have done it without the support. To date, this blog has been viewed over 109,000 times! We appreciate everyone that takes the time to get on here and read my terrible writing!
Currently, Briley is doing very well. She started physical therapy this month to strengthen her legs and has been doing well with it. She still has monthly Cook appointments and will eventually have appointments every other month after March. There is not much to else to report and that it a good thing!
There is a CureSearch walk in Fort Worth in April. We plan to have Team Briley there this year and I will post more details as they become available.
Once again, thank you for everything you have done for us these past 3 years!
Monday, November 4, 2013
NORMAL!
Hi everyone! It's been over two months since my last post. Sorry about that, but there's not a whole lot to report (which is good)!
Briley still has monthly appointments at Cooks. We've actually been going to the Cooks clinic in Grapevine the past 2 or 3 months. It's not busy there and we are usually out of there in 30 minutes or so. Briley has blood draws each time and count checks. She's a big girl now so she thinks that she doesn't need numbing cream to help with the needle sticks! She just lays her arm out there and let's the nurse take blood like it's no big deal! We are very proud of her!
All of her counts have been coming back great. I must admit, I'm always a little apprehensive before getting the results. To many things run through my head. So far, so good. We pray and have faith that everything will continue to go as plan.
Briley has stopped all of her meds. It's been nice not to give her meds other than an occasional allergy pill. The doctor has been a little concern with her weight gain. It's nothing major now, but it's trending up and something we'll have to keep an eye on. She explained to me that this is normal for kids coming off chemo. I've seen this with other kids myself that are just off treatment. I think it's simply a sign that she's finally healthy for the first time in 2.5 years! If that's all we have to worry about, then she is doing good!
Life is busy around the Hostas household. It seems like we are going nonstop. Briley has Monday night dance class, Tuesday afternoon twirling, Alicia and the kids have "church school" on Wednesday nights. Bryson has soccer practice on Tuesday afternoon's and games on Saturday morning. Is all of this normal? We'll take it!
There will be a CureSearch walk in Fort Worth at the Texas Motor Speedway this coming April and Team Briley will be there to help raise money for pediatric cancer research. I will post more information as soon as I get the team signed up and ready to go.
We appreciate everyone that takes the time to read the blog and may God bless you.
Briley still has monthly appointments at Cooks. We've actually been going to the Cooks clinic in Grapevine the past 2 or 3 months. It's not busy there and we are usually out of there in 30 minutes or so. Briley has blood draws each time and count checks. She's a big girl now so she thinks that she doesn't need numbing cream to help with the needle sticks! She just lays her arm out there and let's the nurse take blood like it's no big deal! We are very proud of her!
All of her counts have been coming back great. I must admit, I'm always a little apprehensive before getting the results. To many things run through my head. So far, so good. We pray and have faith that everything will continue to go as plan.
Briley has stopped all of her meds. It's been nice not to give her meds other than an occasional allergy pill. The doctor has been a little concern with her weight gain. It's nothing major now, but it's trending up and something we'll have to keep an eye on. She explained to me that this is normal for kids coming off chemo. I've seen this with other kids myself that are just off treatment. I think it's simply a sign that she's finally healthy for the first time in 2.5 years! If that's all we have to worry about, then she is doing good!
Life is busy around the Hostas household. It seems like we are going nonstop. Briley has Monday night dance class, Tuesday afternoon twirling, Alicia and the kids have "church school" on Wednesday nights. Bryson has soccer practice on Tuesday afternoon's and games on Saturday morning. Is all of this normal? We'll take it!
There will be a CureSearch walk in Fort Worth at the Texas Motor Speedway this coming April and Team Briley will be there to help raise money for pediatric cancer research. I will post more information as soon as I get the team signed up and ready to go.
We appreciate everyone that takes the time to read the blog and may God bless you.
Friday, August 2, 2013
Briley's Port is Out!
First off, let me apologize for not updating in quite a while. I did get in trouble with one person in particular for not updating. Won't mention names here, Alice!
Briley had a Cooks appointment on July 19th for a check-up. Thankfully, all of her counts have stabilized and all is looking great! Briley was so excited to start taking vitamins again! She watched Bryson take them every night and she couldn't because of her treatment. Now she can. She looks forward to taking them every night. It's the small things.....
Briley's port removal was scheduled for this past Tuesday, 7/31. We traveled up the night before and met friends for a Rangers game. Briley and Alicia made a sign to hold up at the game that read, "This cancer survivor loves the Rangers"! She even had someone that saw the sign and wanted a picture with her! The game ended up being one of the best this year and the Rangers won!
The game was lonnnnnggggggg. It lasted until midnight and we didn't get back to the hotel until 1:00 that morning. Of course, we had to be at Cooks first thing the next morning. The alarm started going off at 5:15am. To say the least, we were 30 minutes late getting to Cooks. Oh-well.
We went through the motions, got her checked in, and it was time for the day we've waited on for a long time! She got her silly juice, poked herself in the eye, and off to the back she went. The doc that put her port in, took her port out. The surgery went great and we were done at 10:30. Of course Briley wanted to eat at CiCi's pizza on the way home. We got home, tired, but very happy that she can "officially" declare that she is now a cancer survivor!!
We had a little scare with Bryson over the past couple of days. He had two big "bumps" show up on his arm. Of course, this had us a worried of what it could be, especially the "C" word.
He had a sonogram done this morning and it showed two masses just under the skin. This afternoon, he was taken back to surgery to remove the masses. Turns out, it was two abscesses. They drained them and put drain tubes in. We are thankful that's all it was. So both of our kids had surgery within two days of each other. Maybe we can avoid hospitals for a while now!
I will start work on an article to put in the paper about Briley's journey. I will publish it onto the blog once done so our out-of-town friends have a chance to read it.
We appreciate everyones thoughts and prayers over the past 2 1/2 years. Briley will still have regular clinic visits at Cooks for the next 10 years, but they will just be check-ups. At some point, there will be a life after cancer study or two thrown in there. I will continue to update the blog on her progress. We appreciate everyone that has taken the time to get onto the blog and read about Briley's progress!
Thank You!
Briley had a Cooks appointment on July 19th for a check-up. Thankfully, all of her counts have stabilized and all is looking great! Briley was so excited to start taking vitamins again! She watched Bryson take them every night and she couldn't because of her treatment. Now she can. She looks forward to taking them every night. It's the small things.....
Briley's port removal was scheduled for this past Tuesday, 7/31. We traveled up the night before and met friends for a Rangers game. Briley and Alicia made a sign to hold up at the game that read, "This cancer survivor loves the Rangers"! She even had someone that saw the sign and wanted a picture with her! The game ended up being one of the best this year and the Rangers won!
The game was lonnnnnggggggg. It lasted until midnight and we didn't get back to the hotel until 1:00 that morning. Of course, we had to be at Cooks first thing the next morning. The alarm started going off at 5:15am. To say the least, we were 30 minutes late getting to Cooks. Oh-well.
We went through the motions, got her checked in, and it was time for the day we've waited on for a long time! She got her silly juice, poked herself in the eye, and off to the back she went. The doc that put her port in, took her port out. The surgery went great and we were done at 10:30. Of course Briley wanted to eat at CiCi's pizza on the way home. We got home, tired, but very happy that she can "officially" declare that she is now a cancer survivor!!
We had a little scare with Bryson over the past couple of days. He had two big "bumps" show up on his arm. Of course, this had us a worried of what it could be, especially the "C" word.
He had a sonogram done this morning and it showed two masses just under the skin. This afternoon, he was taken back to surgery to remove the masses. Turns out, it was two abscesses. They drained them and put drain tubes in. We are thankful that's all it was. So both of our kids had surgery within two days of each other. Maybe we can avoid hospitals for a while now!
I will start work on an article to put in the paper about Briley's journey. I will publish it onto the blog once done so our out-of-town friends have a chance to read it.
We appreciate everyones thoughts and prayers over the past 2 1/2 years. Briley will still have regular clinic visits at Cooks for the next 10 years, but they will just be check-ups. At some point, there will be a life after cancer study or two thrown in there. I will continue to update the blog on her progress. We appreciate everyone that has taken the time to get onto the blog and read about Briley's progress!
Thank You!
Wednesday, June 12, 2013
Back from Briley's Wish Trip!
We got back from a fun filled week in Florida this past Saturday! It was an awesome trip and we all had a blast. I can't say enough good things about Give Kids the World and Make A Wish.
On our way to DFW. We are excited!
We caught a Rangers game before heading to the motel.
Our hotel at the airport. The kids loved standing on the balcony watching the planes takeoff. We would soon be on one to Florida early the next morning!
This was our villa at GKTW for the week! We stayed here and traveled to the theme parks during the day!
Donald Duck showed up at GKTW the first morning!
So did Mickey Mouse!
After meeting Donald and Mickey at GKTW, it was off to Disney World's Magic Kingdom!
We walked up to a show at the Castle!
First ride of the week, a spin in the tea cups!
We ran into Andy and Jesse! Bryson loved it!
Back to the village after a long day at Disney World. We found the village Mayor and his wife!
The next day, we went to Universal Studios!
The Cat-in-the-Hat and company!
Briley's favorite ride! It was an elevated train with no ups or downs. She was terrified of roller coasters, so we didn't do many rides.
Dolphins at Sea World!
Briley and Bryson even got to feed the dolphins!
Briley's favorite show, Shamu!
Yes folks, Bryson is sitting on a real gator!
Briley wouldn't sit on it, but got close enough for a picture!
They loved Gatorland!
A family pic with a gator and yes, that is a real snake around Bryson's neck!
Once a week, it Christmas at GKTW!
The pool at the village. Since Friday was Briley's birthday, she got to choose what to do during the day. So we swam all day!
Briley having Birthday supper with the princesses at the village!
Ms. Mary stopped by to tuck us in during our last night before departing the next morning.
Give Kids the World is wonderful! Only wish kids and their immediate families are allowed to stay there. The village is a resort on it own with a ton of stuff to do! They provided the housing, meals, park passes, and plenty of activities! Most of the staff is consisted of volunteers. We would love to go back one day and volunteer! Everyone is very nice and will go out of their way to entertain the kids!
We appreciate Make-A-Wish for giving us the opportunity to make Briley's wish come true!
Thursday, May 30, 2013
Briley's last day of kindergarten!
Today will be Briley's last day of kindergarten! It's hard to believe that the year is over with already and she will be a 1st grader next year! She done great in school! It was a struggle at times with sickness and missing a lot of school, but we managed through it. Alicia has done a great job teaching her. Briley is reading great and loves reading books! I'm proud of her!
Briley's Make-A-Wish trip is coming up fast. We'll leave early Saturday and catch a Rangers game. Spend the night and fly out to Orlando on Sunday. We will be staying at Give Kids the World. It's a resort on it's own and it's where most of the wish families stay. I think the hard part will be deciding where to go! There is so much down there the that it will be hard to decide what to do! I imagine on Monday, we'll start at Disney World! I can't tell you how excited we are!
Briley's Make-A-Wish trip is coming up fast. We'll leave early Saturday and catch a Rangers game. Spend the night and fly out to Orlando on Sunday. We will be staying at Give Kids the World. It's a resort on it's own and it's where most of the wish families stay. I think the hard part will be deciding where to go! There is so much down there the that it will be hard to decide what to do! I imagine on Monday, we'll start at Disney World! I can't tell you how excited we are!
Wednesday, May 22, 2013
All is now well
Briley's flu only lasted for a few hours. Well, at least the fever. The next day, she was back to herself and has stayed that way since. Now that's the way to have the flu! We are very thankful she did not get really sick from it.
Everything else is going really well. Bryson is doing great and having fun being a boy and picking on big sister.
We are 10 days away from going on Briley's wish trip to Disney World. We are overly excited about it! We will be staying the night at the DFW airport for our flight departure at 10:30 the next morning. We've decided to head down to DFW earlier in the day and catch a Ranger's game before going to the hotel. I can't wait to see the kids reaction when we get on the plane and take off. I've got to admit, Alicia and I are nervous. I've flown a few times before, but it's been a long time (before 9-11). Alicia has flown once. I almost would like to drive and see a few sights between here and there, but the kids are so excited to get to fly and it will be part of the excitement.
We are blessed beyond belief.
Everything else is going really well. Bryson is doing great and having fun being a boy and picking on big sister.
We are 10 days away from going on Briley's wish trip to Disney World. We are overly excited about it! We will be staying the night at the DFW airport for our flight departure at 10:30 the next morning. We've decided to head down to DFW earlier in the day and catch a Ranger's game before going to the hotel. I can't wait to see the kids reaction when we get on the plane and take off. I've got to admit, Alicia and I are nervous. I've flown a few times before, but it's been a long time (before 9-11). Alicia has flown once. I almost would like to drive and see a few sights between here and there, but the kids are so excited to get to fly and it will be part of the excitement.
We are blessed beyond belief.
Friday, May 17, 2013
Another ER visit last night
It seems that Briley has been "sicker" off treatment than on. But we are very happy she is off treatment.
Briley went to bed unusually early last night. About the time Alicia laid down in bed, Briley woke up with the chills. She could not get warm. Her temp was 101.7. About 15 minutes later, she had a 102.8 temp. We decided then to take her to the ER. On arrival, her temp rose to 103.1.
So she got her port accessed and lab draws. She then got a rocephine infusion. The lab results came back and showed that she is positive for the flu!
We thought the flu season was well behind us. We were wrong.
She got a dose of Tamiflu and after a call to the oncologist, we got to come home. She seemed like she was feeling much better by the time we left. Upon getting home, her temp was down to 100.7. By the time I finally laid down for bed she didn't have a fever and she's been fever free since then.
We were all suppose to travel up to Stratford this weekend for Brad & Heather's newest addition, Caleb's baptism. Alicia and I were going to be Godparents. We won't be able to make it. I feel really bad about that since we already had to cancel Caleb's baptism once before due to sickness. Ugh. At least Alicia didn't have to make the trip to Cooks today for Briley's scheduled appointment.
Briley went to bed unusually early last night. About the time Alicia laid down in bed, Briley woke up with the chills. She could not get warm. Her temp was 101.7. About 15 minutes later, she had a 102.8 temp. We decided then to take her to the ER. On arrival, her temp rose to 103.1.
So she got her port accessed and lab draws. She then got a rocephine infusion. The lab results came back and showed that she is positive for the flu!
We thought the flu season was well behind us. We were wrong.
She got a dose of Tamiflu and after a call to the oncologist, we got to come home. She seemed like she was feeling much better by the time we left. Upon getting home, her temp was down to 100.7. By the time I finally laid down for bed she didn't have a fever and she's been fever free since then.
We were all suppose to travel up to Stratford this weekend for Brad & Heather's newest addition, Caleb's baptism. Alicia and I were going to be Godparents. We won't be able to make it. I feel really bad about that since we already had to cancel Caleb's baptism once before due to sickness. Ugh. At least Alicia didn't have to make the trip to Cooks today for Briley's scheduled appointment.
Monday, May 13, 2013
Another News Story on Briley
KFDX, Channel 3, stop by the house yesterday and did another segment on Briley's progress. To view the story, click on the link on the right of this page under, "Briley Hostas is Cancer Free!".
We appreciate KFDX for doing stories on Briley. They always do a wonderful job! Really awesome!
We appreciate KFDX for doing stories on Briley. They always do a wonderful job! Really awesome!
Friday, May 10, 2013
A year ago today......
It was a year ago today that we would have to endure another devastating event. It was the night that Gloria, Briley, and Bryson were involved in the wreck.
I just assume to forget about that night. I don't talk about it.
Thank God Bryson was not hurt that night and thank God that Briley has fully recovered from her injuries. She is one tough little girl that has missed out on so much in her life, that she enjoys everything that life has to offer. We are blessed to have both kids still here with us.
We miss Gloria. That's an understatement. Understandably, things have been rough for Alicia this past year. Today is going to be extra hard on her, Jess, Nathan, Glenn, and Ruth. Please keep all of them in your thoughts and prayers today and also on this Sunday, Mother's day.
I just assume to forget about that night. I don't talk about it.
Thank God Bryson was not hurt that night and thank God that Briley has fully recovered from her injuries. She is one tough little girl that has missed out on so much in her life, that she enjoys everything that life has to offer. We are blessed to have both kids still here with us.
We miss Gloria. That's an understatement. Understandably, things have been rough for Alicia this past year. Today is going to be extra hard on her, Jess, Nathan, Glenn, and Ruth. Please keep all of them in your thoughts and prayers today and also on this Sunday, Mother's day.
Thursday, May 2, 2013
Briley is back to her old self!
Briley is back in school and feeling great! No more fever, no more sinus infection, and the coughing is just about gone. That's really good news! She's missed so many days of school this year so it's a good thing that she's a smart little thing and able to move on to 1st grade next year! Bryson has also gotten over the same crud and is feeling great! He is also back in daycare and back to being a little tornado. Thank you for your prayers!
Now, I've got to get something off of my chest, so please forgive me for the little rant I'm about to go on, but it will make me feel better to throw it out there.
I am sick and tired of seeing bald-headed kids being used for advertisements for the Leukemia & Lymphoma Society. It seems like here lately I see an LLS advertisement every time I turn around. Why am I mad (I know you're asking that!)? The LLS gives $0.02 to pediatric cancer research for every public dollar that is raised. That's 2 pennies folks. So if someone sees one of their ads with a bald-headed kid and donates $100 thinking that they will help the organization with pedi cancer research, little do they know that only $2 out of that $100 would actually go towards the intended cause. I don't think that's right. In fact, it's unacceptable. There are so many other better organizations out there that would make better use of that money. It's almost a slap in the face.
Ok, I feel better!
Now, I've got to get something off of my chest, so please forgive me for the little rant I'm about to go on, but it will make me feel better to throw it out there.
I am sick and tired of seeing bald-headed kids being used for advertisements for the Leukemia & Lymphoma Society. It seems like here lately I see an LLS advertisement every time I turn around. Why am I mad (I know you're asking that!)? The LLS gives $0.02 to pediatric cancer research for every public dollar that is raised. That's 2 pennies folks. So if someone sees one of their ads with a bald-headed kid and donates $100 thinking that they will help the organization with pedi cancer research, little do they know that only $2 out of that $100 would actually go towards the intended cause. I don't think that's right. In fact, it's unacceptable. There are so many other better organizations out there that would make better use of that money. It's almost a slap in the face.
Ok, I feel better!
Wednesday, April 24, 2013
Another ER trip
Briley's fever still continues. She had a little bit of fever on Monday as she has had for the past couple of weeks. I went on to class Monday night and on the way there, Alicia calls saying Briley's fever is creeping up. Sure enough, it got high enough for an ER trip. Upon the ER visit, she had some rattling in her lungs. We were thinking that she had pneumonia at this point so I found a ride back to Seymour expecting to get things ready for admission at Cooks. Briley had her port accessed, blood work done, x-rays, breathing treatment, and a rocephin infusion. Her O2 sats were in the low 90's. Not real bad, but lower than what they should. After the breathing treatment, they came up to 96%. X-rays showed that same spot in her lungs, but no pneumonia! We didn't have to go to Cooks! The rochepin infused and we were free to go home. That night we noticed that she was burning up. I took her temp and it was 102.7. grrr..... Since she had the rocephin, she was allowed to have Tylenol to help bring down the temp. And it did.
She's feeling pretty good today. No fever to speak of last night. So maybe she's on the right track to getting better. She's also not coughing like she has been for the past month.
We are so ready to get her healthy so things can return back to normal. I know things could be a lot worse, but it's frustrating being right here at the end and having all of these set backs. She needs to be in school. I need to be working. Alicia needs to be working. It's getting hard just to keep up with the bills. Frustrating.
We are thankful that Bryson is in good health. We are thankful that Briley has only common illnesses now and not relapsing. We are thankful that treatment has worked so well for her. We are thankful for everyone's support and prayers. We are thankful for everyone that organized and participated in fundraisers in the past so that we have the resources to fall back on. We are thankful for the doctors and nurses that take care of all of us. Most importantly, we are thankful that Jesus died for us and our sins so that we may have the chance to enter the kingdom of heaven when our time on earth is done.
She's feeling pretty good today. No fever to speak of last night. So maybe she's on the right track to getting better. She's also not coughing like she has been for the past month.
We are so ready to get her healthy so things can return back to normal. I know things could be a lot worse, but it's frustrating being right here at the end and having all of these set backs. She needs to be in school. I need to be working. Alicia needs to be working. It's getting hard just to keep up with the bills. Frustrating.
We are thankful that Bryson is in good health. We are thankful that Briley has only common illnesses now and not relapsing. We are thankful that treatment has worked so well for her. We are thankful for everyone's support and prayers. We are thankful for everyone that organized and participated in fundraisers in the past so that we have the resources to fall back on. We are thankful for the doctors and nurses that take care of all of us. Most importantly, we are thankful that Jesus died for us and our sins so that we may have the chance to enter the kingdom of heaven when our time on earth is done.
Briley getting her breathing treatment, not feeling good at all.
The "no ouch" cream is on her port. The cream is a good thing!
Larry will kill me for putting this pic on here, but he's great with the kids. He's having a lot of fun with Briley and Briley's having a lot of fun with Larry!
Monday, April 22, 2013
4/22/13 Update
I got into trouble for not updating the blog by a couple of people over the weekend. I'm sorry for that. A good bit has happened since my last post.
Both kids have been sick. Mostly sinus infection stuff. Briley also had an ear infection and is currently being treated for that. Her fever got as high as 102.6 and we stayed up half the night with her. About the time we started getting things ready to go to the ER, her fever would drop down. We also knew that we had an appointment at Cooks the next day, so we waited until then.
We went to Cooks on Tuesday for a regular checkup. All of her counts came back good. Her ANC surprised us a little bit because it was 1040 after being off chemo for 3 weeks. The doctor assured us that it was ok and that her counts would not normalized for 3-4 months. So that makes sense why she is sick & running fever for a week with sinus infection and Bryson is able to fight it off in a day. Just another good reminder of the effects of chemo on the body.
Briley still has a rash from head to toe. The doc asked us to try a couple of things, but it's not working. Alicia thought today that it may be clearing a little bit. If it doesn't clear up soon, I'm calling Cooks for a referral to a dermatologist. It's been going on for way to long and she's up half the night itching.
To say the least, all of this sickness that's been going on for the last couple of weeks have been frustrating. Briley is missing school, dance, & twirling. Alicia or I have to take off work, I'm missing some of my school. We know the end is very near and cannot wait for her counts to normalize. It will get here soon, but not fast enough.
Both kids have been sick. Mostly sinus infection stuff. Briley also had an ear infection and is currently being treated for that. Her fever got as high as 102.6 and we stayed up half the night with her. About the time we started getting things ready to go to the ER, her fever would drop down. We also knew that we had an appointment at Cooks the next day, so we waited until then.
We went to Cooks on Tuesday for a regular checkup. All of her counts came back good. Her ANC surprised us a little bit because it was 1040 after being off chemo for 3 weeks. The doctor assured us that it was ok and that her counts would not normalized for 3-4 months. So that makes sense why she is sick & running fever for a week with sinus infection and Bryson is able to fight it off in a day. Just another good reminder of the effects of chemo on the body.
Briley still has a rash from head to toe. The doc asked us to try a couple of things, but it's not working. Alicia thought today that it may be clearing a little bit. If it doesn't clear up soon, I'm calling Cooks for a referral to a dermatologist. It's been going on for way to long and she's up half the night itching.
To say the least, all of this sickness that's been going on for the last couple of weeks have been frustrating. Briley is missing school, dance, & twirling. Alicia or I have to take off work, I'm missing some of my school. We know the end is very near and cannot wait for her counts to normalize. It will get here soon, but not fast enough.
Thursday, April 11, 2013
4/11/13 Update
Here we are. Being normal. How nice it is! Briley recovered from her sickness and fever. Thank you God! Now life is on cruise control.
I've got to admit, it's a little strange not having to give her multiple meds throughout the week. Today was a very good example. She always took her methotrexate on Thursday. It dawned on me earlier that she needs her Thursday meds...........wait a minute.........no she doesn't! What a wonderful feeling it is!
We are also getting to sleep all night without getting up and giving her the nightly 6mp chemo! That chemo is given on an empty stomach, so we got in the habit of setting the alarm at 1:00 a.m., getting out of bed, give her the chemo, and go back to sleep. We had been doing that for over a year, every night! The nurses thought we were crazy for doing that, but it never fails, Briley always wants a snack before bed. It just became routine that we didn't think much of it anymore. It's been a joy not to have to get up in the middle of the night anymore!
I don't remember if I've mentioned the future plans or not, but if I'm repeating myself, I apologize.
She still takes Bactrim twice/day for 3 days a week to help prevent a certain type of pneumonia. She'll take it for the next 6 months. No sweat!
She'll still have monthly clinic trips to Cooks for the next year for checkups and blood work. At some point 3 or 4 months from now, she will have her port taken out.
Next year, she will have clinic visits once every two months. Then the year after that, once every three months. And so on..........
Eventually, she will only have to go once or twice a year. She will make clinic visits over the next 10 years. It will be hard to believe that she'll almost be driving before everything is completely done!
We are still going to be active with CureSearch, helping other families out, and doing what we can. In fact, Alicia and the kids may be going to the CureSearch walk in Fort Worth this weekend! I wish I could go, but I'll have to stay here and work.
I'll take Briley to Cooks next Thursday for a regular clinic visit/blood work. I'm curious just how much her counts have improved since stopping chemo. I'll will update more at that time.
Once again, we appreciate everyone's thoughts and prayers throughout this ordeal. She's been a little trooper. So has Bryson. He's missed out on a lot of things throughout this journey also. Both kids love going to school! They get out of bed in the mornings ready to go! It's been a blessing that she's done so well. Many families can't say the same. We are very grateful for the technology and God's grace that saved her life.
I've got to admit, it's a little strange not having to give her multiple meds throughout the week. Today was a very good example. She always took her methotrexate on Thursday. It dawned on me earlier that she needs her Thursday meds...........wait a minute.........no she doesn't! What a wonderful feeling it is!
We are also getting to sleep all night without getting up and giving her the nightly 6mp chemo! That chemo is given on an empty stomach, so we got in the habit of setting the alarm at 1:00 a.m., getting out of bed, give her the chemo, and go back to sleep. We had been doing that for over a year, every night! The nurses thought we were crazy for doing that, but it never fails, Briley always wants a snack before bed. It just became routine that we didn't think much of it anymore. It's been a joy not to have to get up in the middle of the night anymore!
I don't remember if I've mentioned the future plans or not, but if I'm repeating myself, I apologize.
She still takes Bactrim twice/day for 3 days a week to help prevent a certain type of pneumonia. She'll take it for the next 6 months. No sweat!
She'll still have monthly clinic trips to Cooks for the next year for checkups and blood work. At some point 3 or 4 months from now, she will have her port taken out.
Next year, she will have clinic visits once every two months. Then the year after that, once every three months. And so on..........
Eventually, she will only have to go once or twice a year. She will make clinic visits over the next 10 years. It will be hard to believe that she'll almost be driving before everything is completely done!
We are still going to be active with CureSearch, helping other families out, and doing what we can. In fact, Alicia and the kids may be going to the CureSearch walk in Fort Worth this weekend! I wish I could go, but I'll have to stay here and work.
I'll take Briley to Cooks next Thursday for a regular clinic visit/blood work. I'm curious just how much her counts have improved since stopping chemo. I'll will update more at that time.
Once again, we appreciate everyone's thoughts and prayers throughout this ordeal. She's been a little trooper. So has Bryson. He's missed out on a lot of things throughout this journey also. Both kids love going to school! They get out of bed in the mornings ready to go! It's been a blessing that she's done so well. Many families can't say the same. We are very grateful for the technology and God's grace that saved her life.
Monday, April 1, 2013
3-31-13 End of Treatment!
Briley took her very last dose of chemo Sat. night! We are very excited and it's hard to believe that the end of chemo treatments are here! It doesn't seem like it's been over 2 years since diagnoses. We've been blessed in so many ways and are very grateful for everyone's support and prayers throughout this journey!
As excited as we are about the end of treatment, it didn't goes as smoothly as we had planned. Briley jumped out of bed saturday night complaining that her chest hurt. It hurt enough that she was crying. Her heart rate has been fast since ending steroids last Tuesday, so saturday night's episode scared us and we ended up in the ER. Come to find out, it was heart burn.
Her heart is still racing today plus she has a fever. She was sent home from school with a 101.3 temp. Always something. I took her to the clinic today and she was put on a z-pack. Hopefully that will clear her up. Her heart rate could be a combination of steroids/fever/dehydration. We're pushing her to drink lots of water. Hopefully the fever will be down in a day or two. If her heart rate is still elevated by Thursday, we'll take her in for an EKG & Echo. We pray that this too will pass.
I will update more about the end of treatment and things she'll have to look forward to in another post.
Here is a picture that Alicia and I made for Briley and everything she's been through.
As excited as we are about the end of treatment, it didn't goes as smoothly as we had planned. Briley jumped out of bed saturday night complaining that her chest hurt. It hurt enough that she was crying. Her heart rate has been fast since ending steroids last Tuesday, so saturday night's episode scared us and we ended up in the ER. Come to find out, it was heart burn.
Her heart is still racing today plus she has a fever. She was sent home from school with a 101.3 temp. Always something. I took her to the clinic today and she was put on a z-pack. Hopefully that will clear her up. Her heart rate could be a combination of steroids/fever/dehydration. We're pushing her to drink lots of water. Hopefully the fever will be down in a day or two. If her heart rate is still elevated by Thursday, we'll take her in for an EKG & Echo. We pray that this too will pass.
I will update more about the end of treatment and things she'll have to look forward to in another post.
Here is a picture that Alicia and I made for Briley and everything she's been through.
Friday, March 22, 2013
Pictures from Briley's last LP
Briley in the middle of the LP. She is getting a mixture of oxygen and nitrous oxide. Alicia & Miss Amy are doing a good job keeping her occupied with the iPad. This is why we love Cooks! They take very good care of the kids and they try hard to make needle sticks as painless/scary as possible. Even with the long needle going into her spine, she does not notice it and does not remember anything!
Briley's last scheduled spinal tap!
Briley and Bryson having fun playing "I see" with the picture!
Some reason, this is Briley's favorite part of the procedure! She gets to decorate the mask with stickers while waiting and then chooses a flavor that she can smell during the procedure! She loves the Rootbeer smell! Once they turn on the Nitrous, she won't remember anything about the procedure! Miss Amy, childlife specialist, is our favorite. She is pictured holding the mask. She's been so good to Briley over the last 2+ years and it's been a blessing to have her on the oncology floor.
The is a picture of Briley's very last chemo infusion. It's called vincristine and it is partly responsible for her not able to run like kids her age should be able to do. We are very happy that she won't be getting it anymore!
Thursday, March 21, 2013
Briley's very last spinal tap!
Alicia, the kids, and I traveled down to Fort Worth last night for an early morning appointment today. Briley was a champ like always during her very last spinal tap! She also had her very last chemo infusion today! She also started the 5 days of steroids and I'm ready for that to be over with before it even started! It's hard to believe that treatment is coming to an end. We've been blessed in so many ways since her diagnoses that I don't even know where to begin.
It was also confirmed today that her very last nightly oral chemo will be on the 30th of this month! I didn't realize, but it's only 9 days away! What will we do? It's going to be a little weird just stopping chemo. Just give her the last dose and that's it. Don't get me wrong, it will be a happy weird, but still.
During her spinal tap today, we were talking to the nurses about everything she's been through. We talked about other cancer kid's and their families and everything they've been through. It's changed our lives. I've changed. Some for the better and some not.
I am happy to report that Briley's friend, Lianna is completely done with treatment! Lianna also had ALL and is a couple of months ahead of Briley in treatment. We met her right after Briley was diagnosed. We found out that Lianna was having surgery today to remove her port! She had a complication with the removal when a piece of the catheter broke off in her artery. They were able to fish the piece out of her heart and she's doing great! She will soon have a victory party! We are so happy for Lianna!
Above all, we thank the Almighty God for blessing us with two wonderful kids and provided for our family throughout this ordeal. We want to thank all of you and many many more that has been there for us, prayed for us, and just cared for us.
It was also confirmed today that her very last nightly oral chemo will be on the 30th of this month! I didn't realize, but it's only 9 days away! What will we do? It's going to be a little weird just stopping chemo. Just give her the last dose and that's it. Don't get me wrong, it will be a happy weird, but still.
During her spinal tap today, we were talking to the nurses about everything she's been through. We talked about other cancer kid's and their families and everything they've been through. It's changed our lives. I've changed. Some for the better and some not.
I am happy to report that Briley's friend, Lianna is completely done with treatment! Lianna also had ALL and is a couple of months ahead of Briley in treatment. We met her right after Briley was diagnosed. We found out that Lianna was having surgery today to remove her port! She had a complication with the removal when a piece of the catheter broke off in her artery. They were able to fish the piece out of her heart and she's doing great! She will soon have a victory party! We are so happy for Lianna!
Above all, we thank the Almighty God for blessing us with two wonderful kids and provided for our family throughout this ordeal. We want to thank all of you and many many more that has been there for us, prayed for us, and just cared for us.
Thursday, March 7, 2013
More Exciting News!
Today, we received word from the HopeWell Foundation that they will be sending us to Orlando, Florida for Briley's dream trip! I can't begin to tell you how excited we all are!!! We are scheduled for the trip June 2nd - 8th. Briley's 6th birthday will be on June 7th!! I'm pretty sure this will be one birthday celebration that she won't forget!
We will be staying at a place called Give Kids the World. It's a resort of it's own! If you are not familiar with GKTW, they fulfill wishes of children around the world with a great family experiences. Wonderful people such as the HopeWell Foundation work with GKTW to provide a child's wish. We will stay in a villa at GKTW (I bet we don't see much of the villa, other than a place to sleep!), and we will also have tickets to Disney World, Universal Studios, & Sea World! The GKTW website has several videos of what to expect when you get there. The kids have watched the videos nonstop that past couple of days! They really get excited when they see the castle at Disney World, the Orca's at Sea World, and their favorite, ice cream for breakfast at GKTW! Briley just can't believe that we get to eat ice cream for breakfast! It's been 3 years since we've been on any kind of vacation, so I can't tell you how excited we are to have a trip of a lifetime!
Changing gears a little bit, Briley had blood work done today to see how the increase in the nightly chemo dose has affected her counts. Her ANC is 2600. It's still higher than we like, but it's down from the count check 2 weeks ago. Her nurse called and said to keep things the same. She wasn't worried about it.
Briley will go back to Cooks on the 21st of this month for a LP, IV chemo, and start 5 days of steroids.
God willing, everything will go according to plan with her treatment and the trip. We appreciate all of the prayers.
We will be staying at a place called Give Kids the World. It's a resort of it's own! If you are not familiar with GKTW, they fulfill wishes of children around the world with a great family experiences. Wonderful people such as the HopeWell Foundation work with GKTW to provide a child's wish. We will stay in a villa at GKTW (I bet we don't see much of the villa, other than a place to sleep!), and we will also have tickets to Disney World, Universal Studios, & Sea World! The GKTW website has several videos of what to expect when you get there. The kids have watched the videos nonstop that past couple of days! They really get excited when they see the castle at Disney World, the Orca's at Sea World, and their favorite, ice cream for breakfast at GKTW! Briley just can't believe that we get to eat ice cream for breakfast! It's been 3 years since we've been on any kind of vacation, so I can't tell you how excited we are to have a trip of a lifetime!
Changing gears a little bit, Briley had blood work done today to see how the increase in the nightly chemo dose has affected her counts. Her ANC is 2600. It's still higher than we like, but it's down from the count check 2 weeks ago. Her nurse called and said to keep things the same. She wasn't worried about it.
Briley will go back to Cooks on the 21st of this month for a LP, IV chemo, and start 5 days of steroids.
God willing, everything will go according to plan with her treatment and the trip. We appreciate all of the prayers.
Friday, February 22, 2013
Exciting news!
Bryson, Briley, and I traveled down to Cooks yesterday for Briley's appointment. Her counts were great! In fact, they were too good. Her ANC was 3010. It was really high, which is good for normal immune systems, but not suppressed systems. We want to keep her ANC around 1000. So, her doctor increased her nightly chemo dose. Due to Briley's genetics, she's really sensitive to the chemo. So even a small dose increase could bottom her counts out. Because of that, she will have a count check in a couple of weeks and we'll go from there.
Now for the good news! Because of the good counts and because the flu is starting to fade away, Briley was released to go back to school! She was so excited about it and she talked about going back to school nonstop on the way home! I've never known any kid so excited to be going to school! We've been very blessed that both kids have stayed healthy through-out the winter months and we are also blessed to have had the opportunity to use the robot! We appreciate the school for making it available for her to use!
We'll keep an eye on her counts. In the mean time, we'll enjoy each day as it happens and be thankful for what the Lord has provided. We also thank everyone for their thoughts and prayers!
Now for the good news! Because of the good counts and because the flu is starting to fade away, Briley was released to go back to school! She was so excited about it and she talked about going back to school nonstop on the way home! I've never known any kid so excited to be going to school! We've been very blessed that both kids have stayed healthy through-out the winter months and we are also blessed to have had the opportunity to use the robot! We appreciate the school for making it available for her to use!
We'll keep an eye on her counts. In the mean time, we'll enjoy each day as it happens and be thankful for what the Lord has provided. We also thank everyone for their thoughts and prayers!
Tuesday, February 12, 2013
100,000 Blog views!
Briley's blog has topped 100,000 views! Kinda scary knowing that many people has read my awful writing, but at the same time, it's awesome knowing so many care about her. I'm thinking to myself that if this blog has been viewed that many times, how many prayers have we received? Many many more than that! And that's what counts!
Yes, it's been a while since I've last blog. I guess in the world of "blogging", no news is good news! Briley is still homebound school and she is trying to use the robot for her class instructions. There are some issues we are working on. We can hear just fine and for the most part, that works. However, the video is very choppy and freezes a lot. I think it's just a problem with living in rural Texas and not being able to get a faster internet. Regardless, we'll make do with it and we are very grateful that Briley has the opportunity to be able to use it!
I think all of the sickness is starting to trend downward. Less and less kids are being sent home, but it is still going around. We'll see what this week and next week brings at school and hopefully she'll get to go back soon!
We have also been working on her wish trip. Since she will be done with treatment on March 30th, we are looking at taking the trip on the second week in April. As more details become available, I'll will let y'all know.
She has a regular appointment/checkup at Cooks next Thursday, the 21st. She's doing really good right now! The only concern we have is that Briley has some sort of rash on both arms and both legs that continues to get worse. We are putting the cortisone cream on constantly and it seems to help a little. We haven't called her doctor yet, but we will if it seems to worsen anymore. We've tried using frag. free laundry detergent, lotion, and so on without luck. So I'm wondering if she's becoming sensitive to the meds. Other than that, she's getting around great and has been feeling great. Both kids have stayed well! That has been such a blessing!
You may remember in a previous post that I mentioned that melanoma was found on a young Seymour girl. Addision started treatment at Cooks last week. She had to change schools and they are basically living at the RMH in Fort Worth. Please keep her and her family in your prayers. Their world has been turned upside down and they could use all the prayers they can get. Thank you!
Yes, it's been a while since I've last blog. I guess in the world of "blogging", no news is good news! Briley is still homebound school and she is trying to use the robot for her class instructions. There are some issues we are working on. We can hear just fine and for the most part, that works. However, the video is very choppy and freezes a lot. I think it's just a problem with living in rural Texas and not being able to get a faster internet. Regardless, we'll make do with it and we are very grateful that Briley has the opportunity to be able to use it!
I think all of the sickness is starting to trend downward. Less and less kids are being sent home, but it is still going around. We'll see what this week and next week brings at school and hopefully she'll get to go back soon!
We have also been working on her wish trip. Since she will be done with treatment on March 30th, we are looking at taking the trip on the second week in April. As more details become available, I'll will let y'all know.
She has a regular appointment/checkup at Cooks next Thursday, the 21st. She's doing really good right now! The only concern we have is that Briley has some sort of rash on both arms and both legs that continues to get worse. We are putting the cortisone cream on constantly and it seems to help a little. We haven't called her doctor yet, but we will if it seems to worsen anymore. We've tried using frag. free laundry detergent, lotion, and so on without luck. So I'm wondering if she's becoming sensitive to the meds. Other than that, she's getting around great and has been feeling great. Both kids have stayed well! That has been such a blessing!
You may remember in a previous post that I mentioned that melanoma was found on a young Seymour girl. Addision started treatment at Cooks last week. She had to change schools and they are basically living at the RMH in Fort Worth. Please keep her and her family in your prayers. Their world has been turned upside down and they could use all the prayers they can get. Thank you!
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