Gray Crowned Miss Sweetheart Elite 2012
On Saturday, May 19, 2012, the 2nd Annual Miss Sweetheart Special Needs Pageant was held at the Hillside Community Church in Keller, Texas.
The Miss Sweetheart Special Needs Pageant was founded by Malyn Bannister, a sophomore at Stephen F. Austin State University. She has competed in numerous local, state and national pageants and is a true inspiration and role model to all who meet her. Her older brother Colby has been blessed with the gift of Down Syndrome, and for most of her life Malyn has been actively striving to increase public awareness for individuals with intellectual disabilities. At age 15, she had a vision of creating a special needs pageant to allow young ladies of all ages with intellectual disabilities the opportunities she has experienced participating in pageants. At age 17 her dream came to life, and the first Miss Sweetheart Special Needs Pageant was held. This pageant gives these special ladies the opportunity to gain life skills, communication skills, self confidence and much, much more.
This year Seymour's own Candice Gayle Gray was crowned Miss Sweetheart Elite 2012. In order to express the positive impact the John Hostas family has had on Candice and the community, Candice gave her crown to Briley Hostas. Every night Candice's mother Connie reads the Team Briley Blog to Candice, and Candice says a prayer for the Hostas family. Candice certainly sacrificed something that she was so proud of because of the love she felt for Briley.
Candice is the daughter of Connie and Royce Woods of Seymour and Joe Gray of Vernon. Also at the pageant were many friends and family supporting Candice in her endeavor.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Things are going good!
There's not much new to report on Briley's recovery, other than things are going good. She's still pain med free and still hurts at time when we move her around. We'll take her for a cbc next week at the Seymour hospital just to check counts. Hopefully they are stable and she'll get back to just monthly cbc's.
She had an exciting night last night! Candice Gray, a sweet down syndrome young lady, wanted to give Briley the crown that she won at a pageant. It was super sweet of her to such a wonderful deed. Briley is super excited about it and has been playing with it non-stop! Candice has a heart of gold!
Alicia got a voice mail from Cooks wanting to know if we wanted to go to a Rangers game. Well, yeah!!!!!! Alicia called the child life at Cooks this morning to confirm. They want us to go to the game on June 30th! Not only that, they want us there for batting practice and then we will have dinner with Ian Kinsler & his wife!!! We are pumped!!! The timing couldn't have been better. I started looking for ranger tickets for the four of us and trying to figure out how to get a wheelchair seat. Now we don't have to worry about it! We are really looking forward to the trip!
We thank God each and every day for blessing us with good health, great friends, awesome support, and the rain we received tonight!
She had an exciting night last night! Candice Gray, a sweet down syndrome young lady, wanted to give Briley the crown that she won at a pageant. It was super sweet of her to such a wonderful deed. Briley is super excited about it and has been playing with it non-stop! Candice has a heart of gold!
Alicia got a voice mail from Cooks wanting to know if we wanted to go to a Rangers game. Well, yeah!!!!!! Alicia called the child life at Cooks this morning to confirm. They want us to go to the game on June 30th! Not only that, they want us there for batting practice and then we will have dinner with Ian Kinsler & his wife!!! We are pumped!!! The timing couldn't have been better. I started looking for ranger tickets for the four of us and trying to figure out how to get a wheelchair seat. Now we don't have to worry about it! We are really looking forward to the trip!
We thank God each and every day for blessing us with good health, great friends, awesome support, and the rain we received tonight!
Sunday, May 27, 2012
Memorial Day Weekend Update
I'm sorry for not posting since Thursday. Things have been a tad bit busy around here with the family reunion going on and work! I want to thank the veterans for your service!
Briley has been doing very good. She hasn't had pain meds in a few days! Hopefully she is past needing meds. She also has been sleeping all night! She still hurts some when we move her around, for example, wheelchair to couch, ect.
We give her baths by laying her on the kitchen counter and I'll hold her head over the sink while Alicia washes her hair! We've also gotten better at the potty thing. Now if we can get Bryson out of diapers............
I was very proud of her today at the reunion. When she came through the door, everyone clapped for her. Of course, that embarrassed her a little. I had the water slide set up and she watched the other kids play on it. Never once did she complain or wanted to be able to join them. I really don't know how a 4 year old little girl can be so mature about the situation that she's in. That's been a little blessing in itself.
Glenn came over on Saturday and went to church with us and then to the house for a while. I know it's been really tough on Glenn and it was good that Alicia and him talked for a while.
I really don't have much more to report. I guess that's a good thing. We appreciate everyone that has brought us food. That alone has helped tremendously. She's received get-well cards from Alaska, Michigan, Delaware, Oklahoma, and many different towns across Texas. Once again, we've been humbled. Thanks!
Briley has been doing very good. She hasn't had pain meds in a few days! Hopefully she is past needing meds. She also has been sleeping all night! She still hurts some when we move her around, for example, wheelchair to couch, ect.
We give her baths by laying her on the kitchen counter and I'll hold her head over the sink while Alicia washes her hair! We've also gotten better at the potty thing. Now if we can get Bryson out of diapers............
I was very proud of her today at the reunion. When she came through the door, everyone clapped for her. Of course, that embarrassed her a little. I had the water slide set up and she watched the other kids play on it. Never once did she complain or wanted to be able to join them. I really don't know how a 4 year old little girl can be so mature about the situation that she's in. That's been a little blessing in itself.
Glenn came over on Saturday and went to church with us and then to the house for a while. I know it's been really tough on Glenn and it was good that Alicia and him talked for a while.
I really don't have much more to report. I guess that's a good thing. We appreciate everyone that has brought us food. That alone has helped tremendously. She's received get-well cards from Alaska, Michigan, Delaware, Oklahoma, and many different towns across Texas. Once again, we've been humbled. Thanks!
Thursday, May 24, 2012
Good results from the appointments
whew, it's been a day! After a long night of Briley not sleeping well, we made a 5 minute drive from the motel to Cooks. First up was her ortho appointment. She had a few x-rays and the surgeon said that everything is progressing nicely. She'll be able to take off the braces when and if she wants and at least bend her knees. It's possible that after her next appointment next month depending what the x-rays show, she may be able to start walking with use of a walker! The stitches in her foot from a couple of lacerations were removed. We will pray that her bones will heal back at a normal rate.
After a short lunch break, we went to her oncology appointment. Of course everyone up there knows her and she was a big hit! The nurses and child life gals had to come see her! They are so good with her in oncology. It's kinda hard to explain, but it's a totally different "hospital" experience on the oncology floor. They show so much compassion to all of us. From the docs, to the nurses, to the child life, they all will sit down and talk to us as long as we want. There's no rushing to get in & out of the room. Anyway, back on subject. Briley had a cbc and doc visit. Her ANC is 1600! So it's basically back to where it was before the accident. Both her hemoglobin & platelets were really good also! Her doc didn't have any concerns. Briley started back on her 6mp chemo this past Monday and she was given the green light to take her methotrexate tonight. So it's back to the normal "chemo" routine.
We stopped by Walgreens to pick up a chemo refill, and then off to Lewisville for our "new to us" suburban. Going from Fort Worth to Lewisville via hwy 121 to an adventure in itself. Road construction, traffic, and a gps that didn't know there is construction had my blood pressure through the roof. Somehow, we ended up at the DFW airport. Yup, I had to pay a toll charge just to do a U-turn. And then another wrong exit of 35E and yet another U-turn. Finally, we found our way to the dealership. When I pulled up, I asked the hungry eyed salesman waiting at the door to make us a deal how in the world they could live in such a place. Once again, I'm glad I live in Seymour Texas where the only traffic issues are getting stuck behind a couple of combines and pickups pulling headers!
The sales dude had most of our paper work ready since the deal was made over the phone. That saved tons of time.
Buying a new car is suppose to be an exciting time. This time was far from it. We had to out of necessity, but first most, it's hard to remotely get excited because of the situation. We would give anything to have our old one back and Nanna still alive.
We are safely back home now. I'm glad that we went last night because Briley did hurt at times in the carseat. We appreciate prayers that were given for a good report and continued prayers for proper healing!
After a short lunch break, we went to her oncology appointment. Of course everyone up there knows her and she was a big hit! The nurses and child life gals had to come see her! They are so good with her in oncology. It's kinda hard to explain, but it's a totally different "hospital" experience on the oncology floor. They show so much compassion to all of us. From the docs, to the nurses, to the child life, they all will sit down and talk to us as long as we want. There's no rushing to get in & out of the room. Anyway, back on subject. Briley had a cbc and doc visit. Her ANC is 1600! So it's basically back to where it was before the accident. Both her hemoglobin & platelets were really good also! Her doc didn't have any concerns. Briley started back on her 6mp chemo this past Monday and she was given the green light to take her methotrexate tonight. So it's back to the normal "chemo" routine.
We stopped by Walgreens to pick up a chemo refill, and then off to Lewisville for our "new to us" suburban. Going from Fort Worth to Lewisville via hwy 121 to an adventure in itself. Road construction, traffic, and a gps that didn't know there is construction had my blood pressure through the roof. Somehow, we ended up at the DFW airport. Yup, I had to pay a toll charge just to do a U-turn. And then another wrong exit of 35E and yet another U-turn. Finally, we found our way to the dealership. When I pulled up, I asked the hungry eyed salesman waiting at the door to make us a deal how in the world they could live in such a place. Once again, I'm glad I live in Seymour Texas where the only traffic issues are getting stuck behind a couple of combines and pickups pulling headers!
The sales dude had most of our paper work ready since the deal was made over the phone. That saved tons of time.
Buying a new car is suppose to be an exciting time. This time was far from it. We had to out of necessity, but first most, it's hard to remotely get excited because of the situation. We would give anything to have our old one back and Nanna still alive.
We are safely back home now. I'm glad that we went last night because Briley did hurt at times in the carseat. We appreciate prayers that were given for a good report and continued prayers for proper healing!
Wednesday, May 23, 2012
Tuesday Night Update
Today has been by far the best day that Briley has had. She has not once asked for pain meds! That is great news! It's been extremely difficult watching her hurt and at times, cry in pain. She was also in a great mood! Laughing, giggling, playing, talking, all the things that a kid is suppose to do! What impresses me the most with her is that she doesn't complain about the situation. She's perfectly content not being able to walk or run around with the other kids. She'll just watching and giggle! She's a smart little girl and knows that the wheelchair is only temporary.
Bryson on the other hand, although he is doing great, he's asked to go to Nanna's house all day. He hasn't seen her for a while and is starting to miss her. Even though we try to explain that Nanna is in heaven with Jesus, he doesn't quite understand the meaning of that. I dread the day that the kids go to Nanna's house, but at the same time, they need to know and will find out eventually. Plus, Glenn & Ruth needs to see the kids as they are having a difficult time with Gloria's passing. Please keep them in your prayers
I think we have the vehicle, or the lack of, figured out. We appreciate everyone's offer to let us use their vehicle to get down to Briley's doctor appointments and I think we will be taking the church's suburban again. We have one picked out and if things go well, we should get it on Thursday after Briley's appointments. We are getting another Suburban. Alicia didn't want a black one again because it would bring back bad memories, so we found a silver one.
I don't remember if I posted about carseat safety. So here I go! As you know, Bryson was in a carseat with a 5 point harness. Briley was in a booster with the seatbeat around her. Bryson's side took the impact, but as you know, Briley received the injuries. After spending some time talking with the carseat expert at Cooks, it's been agreed that both kids will remain in a 5 point harness until they are absolutely to big to fit in it. Some boosters have 5 point harness that are safe up to 100lbs. I do know that the carseat/booster saved their life. Just food for thought!
I returned to work today and Alicia managed just fine without me! She will be going to work tomorrow, so I've got to figure out how to manage without her! Going to work today was bittersweet. I couldn't help but think about the wreck for the better part of the day and how I could have done a lot of things differently. But I was a dad at the time and I have complete trust in my co-workers to take care of my kids as if they were their own. And the same goes to the fire dept. We're all there for each other in times of need. I'm blessed to be part of both EMS & fire and I hope I can have a positive impact on others in need.
Briley's first appointment is with ortho Thursday at 10:00. Then she has an appointment with oncology at 1:00. After all of that, we then have to pickup our "new" used suburban. It's going to be a looooong day! With that being said, we are discussing spending the night tomorrow so there we won't have to do so much driving in one day with Briley. We think it's too much driving in one day this early in recovery. Her pain is just now getting tolerable and we don't want to bounce her around in a car for too long for one day. We'll discuss it further tomorrow and maybe I can get someone to cover the rest of my shift.
So, it seems like I typed a book tonight. Bryson is fast asleep on my arm. Thank you for your continued prayers & get well wishes!
Bryson on the other hand, although he is doing great, he's asked to go to Nanna's house all day. He hasn't seen her for a while and is starting to miss her. Even though we try to explain that Nanna is in heaven with Jesus, he doesn't quite understand the meaning of that. I dread the day that the kids go to Nanna's house, but at the same time, they need to know and will find out eventually. Plus, Glenn & Ruth needs to see the kids as they are having a difficult time with Gloria's passing. Please keep them in your prayers
I think we have the vehicle, or the lack of, figured out. We appreciate everyone's offer to let us use their vehicle to get down to Briley's doctor appointments and I think we will be taking the church's suburban again. We have one picked out and if things go well, we should get it on Thursday after Briley's appointments. We are getting another Suburban. Alicia didn't want a black one again because it would bring back bad memories, so we found a silver one.
I don't remember if I posted about carseat safety. So here I go! As you know, Bryson was in a carseat with a 5 point harness. Briley was in a booster with the seatbeat around her. Bryson's side took the impact, but as you know, Briley received the injuries. After spending some time talking with the carseat expert at Cooks, it's been agreed that both kids will remain in a 5 point harness until they are absolutely to big to fit in it. Some boosters have 5 point harness that are safe up to 100lbs. I do know that the carseat/booster saved their life. Just food for thought!
I returned to work today and Alicia managed just fine without me! She will be going to work tomorrow, so I've got to figure out how to manage without her! Going to work today was bittersweet. I couldn't help but think about the wreck for the better part of the day and how I could have done a lot of things differently. But I was a dad at the time and I have complete trust in my co-workers to take care of my kids as if they were their own. And the same goes to the fire dept. We're all there for each other in times of need. I'm blessed to be part of both EMS & fire and I hope I can have a positive impact on others in need.
Briley's first appointment is with ortho Thursday at 10:00. Then she has an appointment with oncology at 1:00. After all of that, we then have to pickup our "new" used suburban. It's going to be a looooong day! With that being said, we are discussing spending the night tomorrow so there we won't have to do so much driving in one day with Briley. We think it's too much driving in one day this early in recovery. Her pain is just now getting tolerable and we don't want to bounce her around in a car for too long for one day. We'll discuss it further tomorrow and maybe I can get someone to cover the rest of my shift.
So, it seems like I typed a book tonight. Bryson is fast asleep on my arm. Thank you for your continued prayers & get well wishes!
Tuesday, May 22, 2012
Tuesday Morning Update
I'm sorry for not updating yesterday, it was just a little busy. Briley woke up yesterday not needing pain meds! Her pain is easing day by day and she only had pain meds twice yesterday. All of her meds were lost during the wreck, so I had to refill all of her prescriptions. We also got a potty chair that will make life a little easier for all of us. Most of her pain comes from lifting her up, so anytime we can minimize the lifting helps out a lot. I also did a good bit of searching for a vehicle on the computer. I know have a short list, but we are still waiting on the insurance stuff to come through.
KFDX 3 news crew stopped by the house and did a story on Briley. They have been extremely supportive of our family and we appreciate them so much. You can go to their website and watch the clip. I'll try to get a link to it on the blog.
I guess Briley had a pretty good night. I've been sleeping in Bryson's bed, but I never heard her waking up in pain or Alicia hollering for help! It was nice being able to sleep all night without waking up!
Alicia has been wonderful throughout this whole ordeal. She has her moments everyday, but considering what she's been through, she has been doing great! Her faith as been key to get her through this and it's been her faith that has helped me & the kids through this. She's done a great job explaining to Briley & Bryson what happen to Nanna and where nanna is now. Briley says, "when I get to heaven and see nanna, I will run to her and give her a big hug"!
Briley has both ortho and oncology appointments on Thursday. We pray that everything is heeling fine and her counts are now stable. I hate borrowing other people's stuff, but we'll have to borrow a vehicle to get down there. Hopefully we'll have our own vehicle by that next appointment.
I'm back at work today. It's been a little rough for me coming back, but I've got get back on that horse. Alicia plans to work tomorrow & friday. If we can get through this week, then Alicia's sister, Jessica, will come down to help with Briley on the days that I work.
Thanks!
KFDX 3 news crew stopped by the house and did a story on Briley. They have been extremely supportive of our family and we appreciate them so much. You can go to their website and watch the clip. I'll try to get a link to it on the blog.
I guess Briley had a pretty good night. I've been sleeping in Bryson's bed, but I never heard her waking up in pain or Alicia hollering for help! It was nice being able to sleep all night without waking up!
Alicia has been wonderful throughout this whole ordeal. She has her moments everyday, but considering what she's been through, she has been doing great! Her faith as been key to get her through this and it's been her faith that has helped me & the kids through this. She's done a great job explaining to Briley & Bryson what happen to Nanna and where nanna is now. Briley says, "when I get to heaven and see nanna, I will run to her and give her a big hug"!
Briley has both ortho and oncology appointments on Thursday. We pray that everything is heeling fine and her counts are now stable. I hate borrowing other people's stuff, but we'll have to borrow a vehicle to get down there. Hopefully we'll have our own vehicle by that next appointment.
I'm back at work today. It's been a little rough for me coming back, but I've got get back on that horse. Alicia plans to work tomorrow & friday. If we can get through this week, then Alicia's sister, Jessica, will come down to help with Briley on the days that I work.
Thanks!
Sunday, May 20, 2012
Briley's first full day back at home!
Briley is still waking up in pain at night, but she only got up twice last night needing pain meds. She's had a pretty good day today. She's needed pain meds 3 times throughout the day. We had a few visitors. A couple of Briley's friends came over along with her cousins. She played some, but otherwise watched the other kids run around the house. She'll be able to join them running around soon! She's been eating a little better. Her diet has consisted of only scrambled eggs and great grandma's homemade bread! We can't get her to eat anything else! She got a bath today. We laid her on the kitchen bar on towels and washed her hair over the sink. Other than that, there's not a whole lot to report.
I plan to go back to work on Tuesday. That's a big maybe because I have no idea how Alicia can take Briley to the potty by herself. So if anyone has a wheelchair bound kid that would like to give some pointers, we would appreciate it!
KFDX TV-3 called today and said that they would like to come over tomorrow to do a follow up story on Briley. We are grateful for Ryan for doing a wonderful job with the stories and keeping everyone informed of her progress.
We are counting are blessing because things could have been lots worse. Yeah, our Briley has been through her fair share of crap in her young life, but she and Bryson are still here. She will walk again. Bones will heal. Gloria's passing will be easier with time. We are grateful to live in Seymour, Alicia's roots in Munday, and in this area of Texas. Briley has received get-well cards from all over this area. We appreciate everyone one of them.
Tonight, please say a prayer for the Chambers family from Wichita. Their little girl has recently diagnosed with leukemia. I was fortunate enough to be able to meet them while we were at Cooks. In fact, it was their second day diagnosed when we met. I could tell they were scared of what will happen, as were we when Briley was first diagnosed.
I want to personally thank everyone who has been reading the blog, so Thank You!
I plan to go back to work on Tuesday. That's a big maybe because I have no idea how Alicia can take Briley to the potty by herself. So if anyone has a wheelchair bound kid that would like to give some pointers, we would appreciate it!
KFDX TV-3 called today and said that they would like to come over tomorrow to do a follow up story on Briley. We are grateful for Ryan for doing a wonderful job with the stories and keeping everyone informed of her progress.
We are counting are blessing because things could have been lots worse. Yeah, our Briley has been through her fair share of crap in her young life, but she and Bryson are still here. She will walk again. Bones will heal. Gloria's passing will be easier with time. We are grateful to live in Seymour, Alicia's roots in Munday, and in this area of Texas. Briley has received get-well cards from all over this area. We appreciate everyone one of them.
Tonight, please say a prayer for the Chambers family from Wichita. Their little girl has recently diagnosed with leukemia. I was fortunate enough to be able to meet them while we were at Cooks. In fact, it was their second day diagnosed when we met. I could tell they were scared of what will happen, as were we when Briley was first diagnosed.
I want to personally thank everyone who has been reading the blog, so Thank You!
We are all home now!
It's late, everyone is fast asleep. Time to update! Briley's cbc showed her ANC to be 2280! That's the highest that we ever seen! It was good enough to send Briley home! Alicia called me and said to come get them. I couldn't get out of the door fast enough!
Since Briley had been running a low grade fever last night, she was given antibiotics that should get her through a day or two. They know that we will keep an eye on her temp and if need be, we will go to the Seymour Hospital for cultures, count check, and antibiotics. But we'll pray that her fever stays away.
We were fortunate to be able to take our church's Yukon to Fort Worth and pick up Briley & Alicia. The extra room was needed since her legs have to to stay straight out. Dad and I engineered by building leg supports up from the floorboard by stacking a box, suitcase, and pillows. Briley got pain meds before we left and it worked pretty good until about Springtown. We pulled over and gave her some more and it lasted until we got home. Briley was so excited to be leaving. She talked & talked & talked.
She got to try out the little wheelchair when we got home and she looked like a pro wheeling that thing around. Of course Bryson was excited to see everyone! I started timing him and Briley how long it would take for them to start fighting. From the time they first saw each other to the first fight..........it only took 30 minutes! Bryson thought it would be funny if he blocked Briley's wheelchair path by standing in her way or stacking toys in her path. I'm very surprised that he hasn't tried to give her a ride around the house yet. And we still have at least 6 weeks to go! oh-boy..........
Alicia's sister, brother-in-law & kids came over for a while. We had a good home cooked meal! Everyone is thrilled to be home!
I am now looking forward to sleeping in my own bed again. Yes, all 4 of us slept in the same bed! Well, Bryson and I got the boot. That's ok. As long as Briley is comfortable. I guess it's the couch for me and this is one way for Bryson to start sleeping in his bed.
Briley is scheduled to go back to Cooks this coming Wednesday or Thursday for follow up x-rays. I hope we can get a vehicle at that time. I appreciate my co-workers for covering my days while I was out! We thank everyone for their support, get well wishes, and prayers. Words cannot express how much we appreciate everyone! Thank You!
Since Briley had been running a low grade fever last night, she was given antibiotics that should get her through a day or two. They know that we will keep an eye on her temp and if need be, we will go to the Seymour Hospital for cultures, count check, and antibiotics. But we'll pray that her fever stays away.
We were fortunate to be able to take our church's Yukon to Fort Worth and pick up Briley & Alicia. The extra room was needed since her legs have to to stay straight out. Dad and I engineered by building leg supports up from the floorboard by stacking a box, suitcase, and pillows. Briley got pain meds before we left and it worked pretty good until about Springtown. We pulled over and gave her some more and it lasted until we got home. Briley was so excited to be leaving. She talked & talked & talked.
She got to try out the little wheelchair when we got home and she looked like a pro wheeling that thing around. Of course Bryson was excited to see everyone! I started timing him and Briley how long it would take for them to start fighting. From the time they first saw each other to the first fight..........it only took 30 minutes! Bryson thought it would be funny if he blocked Briley's wheelchair path by standing in her way or stacking toys in her path. I'm very surprised that he hasn't tried to give her a ride around the house yet. And we still have at least 6 weeks to go! oh-boy..........
Alicia's sister, brother-in-law & kids came over for a while. We had a good home cooked meal! Everyone is thrilled to be home!
I am now looking forward to sleeping in my own bed again. Yes, all 4 of us slept in the same bed! Well, Bryson and I got the boot. That's ok. As long as Briley is comfortable. I guess it's the couch for me and this is one way for Bryson to start sleeping in his bed.
Briley is scheduled to go back to Cooks this coming Wednesday or Thursday for follow up x-rays. I hope we can get a vehicle at that time. I appreciate my co-workers for covering my days while I was out! We thank everyone for their support, get well wishes, and prayers. Words cannot express how much we appreciate everyone! Thank You!
Saturday, May 19, 2012
Briley is Home!
I got the call today that I was waiting for! Alicia said to get the car and come get us! I don't have much time to write right now, as we are cooking a home cook meal! I will try to update for later. Anyhow, we are all under one roof tonight at home!!!!!!!!!
Friday, May 18, 2012
Friday Night Update
Briley woke up in a good mood this morning! She felt good pretty much all day! Briley's doc stopped by and said her ANC was 840! Great! The shot worked! So she stopped the antibiotics that Briley was receiving daily. The doctor said that the counts should keep going up a little more and then drop some, but they shouldn't drop below 500. Hopefully she should be over being neutropenic! The doc also said if Briley's fever stays away and her counts were up, that she could go home as soon as tomorrow!!!!! But.........
she's running fever tonight. 101.7. Crap. Maybe Sunday we'll get everyone home.
Briley still hasn't been eating or drinking well at all, except for chips & hot sauce. She loves chips & hot sauce! Anyway, her doc was concerned about that and said that they may have to hook her IV back up for fluids and put a feeding tube in if things didn't improve today. I think it scared her a little into eating more!
Ortho came in and took x-rays & put new bandages on her legs. The x-rays looked good, except no new bone is growing yet. There's no reason to be concerned about that until later.
We had some visitors today and one person brought some very pretty flowers! Just a reminder, we can't have flowers on the cancer floor. Something about pollen, bacteria, or something that's not allowed around kids with low ANC. We appreciate it and I know that Briley will love them when she gets home!d
I got back to Seymour around 4:00 this afternoon. I thought that I would be excited to be home, but I'm the exact opposite. I'm very happy to be able to see Bryson, as he is excited to see me, but I haven't been this "down" since the night of the accident. Bryson wanted to go to nanna's house. How do I explain that he won't be able to see his nanna? I guess it will all work out in time.
We are about to Skype Alicia & Briley so maybe that will perk me up a little. Maybe a fishing trip on Sunday will help out also. Good Night!
she's running fever tonight. 101.7. Crap. Maybe Sunday we'll get everyone home.
Briley still hasn't been eating or drinking well at all, except for chips & hot sauce. She loves chips & hot sauce! Anyway, her doc was concerned about that and said that they may have to hook her IV back up for fluids and put a feeding tube in if things didn't improve today. I think it scared her a little into eating more!
Ortho came in and took x-rays & put new bandages on her legs. The x-rays looked good, except no new bone is growing yet. There's no reason to be concerned about that until later.
We had some visitors today and one person brought some very pretty flowers! Just a reminder, we can't have flowers on the cancer floor. Something about pollen, bacteria, or something that's not allowed around kids with low ANC. We appreciate it and I know that Briley will love them when she gets home!d
I got back to Seymour around 4:00 this afternoon. I thought that I would be excited to be home, but I'm the exact opposite. I'm very happy to be able to see Bryson, as he is excited to see me, but I haven't been this "down" since the night of the accident. Bryson wanted to go to nanna's house. How do I explain that he won't be able to see his nanna? I guess it will all work out in time.
We are about to Skype Alicia & Briley so maybe that will perk me up a little. Maybe a fishing trip on Sunday will help out also. Good Night!
SES 1st Grade Walks for CureSearch
Thursday, May 17, 2012
Peacock Alley Boutique Supports TEAM BRILEY
Peacock Alley Boutique Supports TEAM BRILEY
Peacock Alley Boutique will be donating 25% of their sales on May 18 & 19 (Fri & Sat) to the Briley Hostas Family. The boutique owners, P.J. & Lindsey, have followed Briley’s story and would like to help the family out. So, please visit http://www.peacockalleyboutique.com/, get you a cute new shirt, dress or piece of jewelry and help theHostas Family out.
Thursday Night Update
Briley's had a terrible day. First it was the low ANC. They gave her a shot that is suppose to put her bone marrow into overdrive. She's never had that before. Usually only high risk leukemia & solid tumor patients get it. A side effect is bone pain. She's hurt & cried throughout the day. There were only short periods of time after her pain meds that she felt alright, but those were few & far between. The pain meds are making her constipated. She spent a lot of time on the potty trying. She even feel asleep on it at one point! Finally the meds worked! Then we gave her a sponge bath and tilted the wheel chair back over the bath tub and washed her hair. She felt pretty dang good after all of that. That was my chance to head to Seymour. But..........
We got back to the room for supper after being in the playroom. She started feeling bad again & hurting. She's running a fever, again........
I know how hard it is to be by yourself with her right now. It takes two people to do a lot of things since she's got to be moved a certain way in a certain position. It will be a lot easier for everyone if I stay here tonight to help out since she's been hurting so bad and running a temp. I guess I will try to head back home tomorrow morning after we see the doctor.
I think that I got the car insurance stuff figured out and sent off. Alicia and I were talking about how we can even leave Briley behind for a day to find another vehicle. Hopefully we'll get into a routine at some point and things will come a little easier.
I applaude parents that have wheelchair bound kids. I don't know how they do it!
I don't know why she's running temp or why it's taking so long for her ANC to recover. Yeah, because her bone marrow has been traumatized, but everyone seems a little surprised that it's taking this long to recover.
We found out today that a downs kid from Wichita was diagnosed with Leukemia yesterday. They are here at Cooks. I've walked by their room several times today, but I haven't seen anyone. Anyway, say an extra prayer for that family!
I know that I've said this many times before, but Briley is a long ways from being out of the woods. Please keep her in your thoughts and prayers, along with the rest of us as our patience is being tested.
Thanks!
We got back to the room for supper after being in the playroom. She started feeling bad again & hurting. She's running a fever, again........
I know how hard it is to be by yourself with her right now. It takes two people to do a lot of things since she's got to be moved a certain way in a certain position. It will be a lot easier for everyone if I stay here tonight to help out since she's been hurting so bad and running a temp. I guess I will try to head back home tomorrow morning after we see the doctor.
I think that I got the car insurance stuff figured out and sent off. Alicia and I were talking about how we can even leave Briley behind for a day to find another vehicle. Hopefully we'll get into a routine at some point and things will come a little easier.
I applaude parents that have wheelchair bound kids. I don't know how they do it!
I don't know why she's running temp or why it's taking so long for her ANC to recover. Yeah, because her bone marrow has been traumatized, but everyone seems a little surprised that it's taking this long to recover.
We found out today that a downs kid from Wichita was diagnosed with Leukemia yesterday. They are here at Cooks. I've walked by their room several times today, but I haven't seen anyone. Anyway, say an extra prayer for that family!
I know that I've said this many times before, but Briley is a long ways from being out of the woods. Please keep her in your thoughts and prayers, along with the rest of us as our patience is being tested.
Thanks!
Peacock Alley Boutique Supports TEAM BRILEY
Peacock Alley Boutique will be donating 25% of their sales on May 18 & 19 (Fri & Sat) to the Briley Hostas Family. The boutique owners, P.J. & Lindsey, have followed Briley’s story and would like to help the family out. So, please visit http://www.peacockalleyboutique.com/, get you a cute new shirt, dress or piece of jewelry and help the Hostas Family out.
Thursday Morning Update
Briley had a little set back this morning. Her ANC dropped back down to 50. So, that's exactly the opposite of what needs to happen to get back home. Not going home tomorrow. Her doctor said that they will give her a round of shots that will help her bone marrow get back into action. The doctor said it would be another 3-4 days before her counts would come up enough to be able to come home.
I will be going home today. Bryson needs to see at least me. Maybe he can come back with me & dad for a day this weekend so he can see Briley & Alicia.
Not much else happening around here. She had a fairly good night last night. She only woke up once around 3:00 and needed pain meds. She slept the rest of the time!
She's still not eating hardly anything, but drinking fluids better. Other than that, here we sit.
I'll get reports from Alicia while at home and keep the blog updated!
I will be going home today. Bryson needs to see at least me. Maybe he can come back with me & dad for a day this weekend so he can see Briley & Alicia.
Not much else happening around here. She had a fairly good night last night. She only woke up once around 3:00 and needed pain meds. She slept the rest of the time!
She's still not eating hardly anything, but drinking fluids better. Other than that, here we sit.
I'll get reports from Alicia while at home and keep the blog updated!
Wednesday, May 16, 2012
Wednesday Night Update
As I posted this morning, Briley's ANC went up to 140! However, the fever has returned tonight. Her temp is 101.5 The oncologist said that they wanted to see her ANC trend upward before they will release her. She'll have another cbc in the morning so we are praying that it will be higher. If it's still on the rise on Friday morning, she may be discharged back home!
The doc said that she would be discharged home and not to the Ronald Mcdonald House! That's good, so I checked out of the house today so another family will be able to stay there. It's always full and we are lucky to get a room.
We found a wheelchair to use until Briley's comes in! So thank you Terri!
Briley's day has been kinda mixed. She's been doing good for most of the day with periods of pain in between. Her lortab is doing her wonders and she's pretty dang funny after taking it!
I now remember how sad of a floor this is after seeing the kids and meeting a couple of families up here. I had the pleasure of meeting the family of a teenage girl who was diagnosed with leukemia 6 days ago. It breaks my heart for them, but I hope that I was able to encourage them a little bit.
We had a couple of guest today. Thanks Bill Myers & Brandi Bell for stopping by! Bill was kind enough to run to target with me and I was happy to give him a ride back to his car since he parked in the wrong parking garage a long ways away. Brandi brought us a good home cooked meal and we can't wait to start digging in! Anything other than hospital food is a big blessing in itself!
Alicia is holding up pretty good. That's been a blessing also. I know things are being taken care of back home and thank y'all for that. Thank you everyone and keep praying!
The doc said that she would be discharged home and not to the Ronald Mcdonald House! That's good, so I checked out of the house today so another family will be able to stay there. It's always full and we are lucky to get a room.
We found a wheelchair to use until Briley's comes in! So thank you Terri!
Briley's day has been kinda mixed. She's been doing good for most of the day with periods of pain in between. Her lortab is doing her wonders and she's pretty dang funny after taking it!
I now remember how sad of a floor this is after seeing the kids and meeting a couple of families up here. I had the pleasure of meeting the family of a teenage girl who was diagnosed with leukemia 6 days ago. It breaks my heart for them, but I hope that I was able to encourage them a little bit.
We had a couple of guest today. Thanks Bill Myers & Brandi Bell for stopping by! Bill was kind enough to run to target with me and I was happy to give him a ride back to his car since he parked in the wrong parking garage a long ways away. Brandi brought us a good home cooked meal and we can't wait to start digging in! Anything other than hospital food is a big blessing in itself!
Alicia is holding up pretty good. That's been a blessing also. I know things are being taken care of back home and thank y'all for that. Thank you everyone and keep praying!
A quick Wed. Morning Update
I think it's Wednesday........anyway, we didn't have such a good night last night. In fact, most nights are not good. She wakes up screaming, crying, and hurting. It turns into panic attacks. I don't know what's going on with her, because I really don't think all of it is from the pain. We've received information on post traumatic stress support groups for kids and may have to take advantage of their services. I hope this all gets better when we get home.
Her ANC is up this morning to 140!!!!!! She has turned the corner!!!! We'll see what the doc says and I'll let y'all know.
Her wheelchair & potty chair is on order. We may be discharged before the wheelchair comes in, so if anyone knows of a spare wheelchair that we can borrow for a couple of days, please let us know.
I can't remember if I ever mentioned this, but she will be in the braces and unable to walk for 6-8 weeks. Thank God she will be able to get on her feet!!! Could be worse!
Will update more later!
Her ANC is up this morning to 140!!!!!! She has turned the corner!!!! We'll see what the doc says and I'll let y'all know.
Her wheelchair & potty chair is on order. We may be discharged before the wheelchair comes in, so if anyone knows of a spare wheelchair that we can borrow for a couple of days, please let us know.
I can't remember if I ever mentioned this, but she will be in the braces and unable to walk for 6-8 weeks. Thank God she will be able to get on her feet!!! Could be worse!
Will update more later!
Tuesday, May 15, 2012
Tuesday Night Update
I really don't have a whole lot to update on. I guess the big news of the day is Briley was moved from the trauma floor to the oncology floor. The trauma team said that she would have been discharged today, but since her ANC is very low at 40 and she spiked a fever last night, her oncology docs wanted her on their floor. That is fine with us! Briley has been feeling pretty good all day. There are times that she needs her pain meds, especially after transitions from the bed to the wheelchair or potty. It's looking like it will be a 2 person job when she needs to potty. One to pick her up & one to wipe. I don't know how we are going to do it when Alicia is back at work or if I'm at work. I guess we'll figure it out eventually.
Deacon Jim & Alicia's dad, Glenn, came for a visit today. It was good seeing both of them.
We really don't know when she will be discharged. She could tomorrow if she doesn't run any fever, but may have to stay at the Ronald McDonald House until her ANC comes up. It's all speculation, but we'll just have to wait and see.
It's nice being on the oncology floor. We've been wanting to see the new wing, but not in this way. It's really nice. I'll have to go exploring tomorrow.
No, we did not get to meet Garth Brooks & Troy Aikman today!
Once again, we appreciate everyone's support during this trying time for our family. We'll pray for a peaceful & restful night without pain!
Deacon Jim & Alicia's dad, Glenn, came for a visit today. It was good seeing both of them.
We really don't know when she will be discharged. She could tomorrow if she doesn't run any fever, but may have to stay at the Ronald McDonald House until her ANC comes up. It's all speculation, but we'll just have to wait and see.
It's nice being on the oncology floor. We've been wanting to see the new wing, but not in this way. It's really nice. I'll have to go exploring tomorrow.
No, we did not get to meet Garth Brooks & Troy Aikman today!
Once again, we appreciate everyone's support during this trying time for our family. We'll pray for a peaceful & restful night without pain!
Tuesday Morning Update
Briley is still fast asleep. I just talked to the nurse about her blood count. Her hemoglobin & platelets are holding up well, but her ANC dropped, again. It is now 40. It's definitely past the point of were any infection, even a common cold, would be critical. So it sounds like she will be transferred down to the oncology floor at some point today. We will feel much better being down there.
Briley woke up in about 1:30 this morning having a crying, screaming fit. I think she may had a terrible nightmare. It took us a long while to get her settled back down. She was so upset that she vomited. Mom also said Bryson jump out of bed a couple of nights ago crying and scared. She said he was scared of the truck.
We talk so much about Briley and tend to push Bryson to the side. He is a little warrior himself that has been through a lot also. His world has been turned upside down again. He cried for his momma last night. After Briley was diagnosed with leukemia, Bryson didn't get to see her for nearly a month. When he did finally get to see her, he held onto her for hours. He used to love to spend the nights at the grandparents, but since then, he cries to come home. He's been afraid that we would be away from him for a long time. Here we are again. He can't come down here with her ANC so low. So if anyone knows of something fun he can do with other kids his age, please contact mom. He needs to get out and play with friends.
Moving Briley around or even letting her use the bathroom is pretty much a 2 person job. She's been using the bedpan. I have to put one arm underneath her legs for support, the other arm around her back as she puts her arms around my neck. I can then lift her up as one unit and move her where she needs to go. If she's using the bedpan, I lift her up as the nurse or Alicia wipes her bottom. It's been a chore just to do simple task. Her legs hurt anytime that we move her. She loves sitting in the wheelchair, but refuses to move to it because of the pain involved during the move. This will hopefully get better in time.
Her leg braces will some off at some point after follow-up X-rays determine that they can do so. That would make a world of difference.
At some point today, I will try to figure out how to post the news stories onto the blog for those of you without Facebook. Or you can simply visit www.kfdx.com and look for the two stories. We thank them for being such great supporters, not only for us, but for all of the towns in the area.
We ask that you please pray for Briley's ANC to recover. It must recover and she must stop running a fever before she can go home. Most kids would have already been home, or would be going home today. Her Leukemia situation will delay us from coming home. We'll get there eventually.
Oh-yeah, this blog has been read over 7,200 times since the accident! We appreciate everyone!
Briley woke up in about 1:30 this morning having a crying, screaming fit. I think she may had a terrible nightmare. It took us a long while to get her settled back down. She was so upset that she vomited. Mom also said Bryson jump out of bed a couple of nights ago crying and scared. She said he was scared of the truck.
We talk so much about Briley and tend to push Bryson to the side. He is a little warrior himself that has been through a lot also. His world has been turned upside down again. He cried for his momma last night. After Briley was diagnosed with leukemia, Bryson didn't get to see her for nearly a month. When he did finally get to see her, he held onto her for hours. He used to love to spend the nights at the grandparents, but since then, he cries to come home. He's been afraid that we would be away from him for a long time. Here we are again. He can't come down here with her ANC so low. So if anyone knows of something fun he can do with other kids his age, please contact mom. He needs to get out and play with friends.
Moving Briley around or even letting her use the bathroom is pretty much a 2 person job. She's been using the bedpan. I have to put one arm underneath her legs for support, the other arm around her back as she puts her arms around my neck. I can then lift her up as one unit and move her where she needs to go. If she's using the bedpan, I lift her up as the nurse or Alicia wipes her bottom. It's been a chore just to do simple task. Her legs hurt anytime that we move her. She loves sitting in the wheelchair, but refuses to move to it because of the pain involved during the move. This will hopefully get better in time.
Her leg braces will some off at some point after follow-up X-rays determine that they can do so. That would make a world of difference.
At some point today, I will try to figure out how to post the news stories onto the blog for those of you without Facebook. Or you can simply visit www.kfdx.com and look for the two stories. We thank them for being such great supporters, not only for us, but for all of the towns in the area.
We ask that you please pray for Briley's ANC to recover. It must recover and she must stop running a fever before she can go home. Most kids would have already been home, or would be going home today. Her Leukemia situation will delay us from coming home. We'll get there eventually.
Oh-yeah, this blog has been read over 7,200 times since the accident! We appreciate everyone!
Monday, May 14, 2012
Monday Night Update
A good bit of things have happened today. Briley & woke up around 8:30. She immediately sat up in bed, all by herself! That was a first! She played basically all day with her barbies and coloring books. She also had her foley cath taken out and she pooped! I've never been so happy about a poop! Her continuous pain drip was d/c'd. She only has the button push and as needed lortab for pain control. She has been doing pretty good with it! She only hit the button 4 times today, compared to about 60 yesterday! She has been fever free all day, until Alicia walked in the door. She then spiked a fever of 102. The lortab brought the fever down a little bit.
The trauma team told us that she would have been discharged either today or tomorrow if it wasn't for her Leukemia. Her hemoglobin and platelets stayed steady in the good today, but her ANC dropped once again to 180. Since her ANC is so low and because of the constant fever, oncology wants to keep her until both improve. Briley may be transferred down to the oncology floor tomorrow. We really hope that this will happen. The floor is sterile and we love the onco nurses & docs. It's just a different atmosphere there. Maybe it's where we feel more comfortable or whatever, but I think it's because we know that her bones will heel in time, however, the leukemia is just a scary disease.
A accident prevention lady stopped by with a new carseat. We had a good discussion about the wreck and carseats. To say the least, Briley will be going back to the 5 point harness. Case in point - Bryson's lack of serious injuries.
It seems like I'm missing a lot of the day's happenings. Oh-well, it's been a day. Overall, today has been a great day, at least with Briley. Gloria's funeral was today and it was good that Alicia spent some time back home with her family. Deacon Jim will be bringing Alicia's dad, Glenn down to Fort Worth tomorrow to visit Briley. We are looking forward to his arrival. We appreciate KFDX for the stories they have broadcast and everyone else that has been there for us for the past year & half.
The trauma team told us that she would have been discharged either today or tomorrow if it wasn't for her Leukemia. Her hemoglobin and platelets stayed steady in the good today, but her ANC dropped once again to 180. Since her ANC is so low and because of the constant fever, oncology wants to keep her until both improve. Briley may be transferred down to the oncology floor tomorrow. We really hope that this will happen. The floor is sterile and we love the onco nurses & docs. It's just a different atmosphere there. Maybe it's where we feel more comfortable or whatever, but I think it's because we know that her bones will heel in time, however, the leukemia is just a scary disease.
A accident prevention lady stopped by with a new carseat. We had a good discussion about the wreck and carseats. To say the least, Briley will be going back to the 5 point harness. Case in point - Bryson's lack of serious injuries.
It seems like I'm missing a lot of the day's happenings. Oh-well, it's been a day. Overall, today has been a great day, at least with Briley. Gloria's funeral was today and it was good that Alicia spent some time back home with her family. Deacon Jim will be bringing Alicia's dad, Glenn down to Fort Worth tomorrow to visit Briley. We are looking forward to his arrival. We appreciate KFDX for the stories they have broadcast and everyone else that has been there for us for the past year & half.
Monday Morning Update
I don't have much to update, other than good news! Briley finally got out of the wheelchair around midnight last night! She felt very good sitting in that dang wheelchair for that long, it was a big step forward! We transferred her over to the bed, and she wanted to watch Cars, again. Finally about 1:30, I turned off the tv and we both slept very good. She did wake up around 3:00 with pain & discomfort, so she pressed the pain button and that's been the last time it's been used up to this point!
We slept the rest of the night up until about 8:30 this morning. We both woke up and Briley has been feeling great. She sat up in bed by herself for the first time! She's been coloring all morning. Ate a little bit of cereal, and is now talking on the phone with Alicia. She has not complained of any pain other than a wrinkled sheet underneath her foot.
The surgeon came in earlier and said things are progressing nicely. They will take out the foley cath at some point. So we have to learn how to use a bed pan. Her fever is also gone this morning! That is huge! She will be here another 2-3 days depending on fever & ANC. We will be doing a few transfers over to the wheel chair today and her continuous pain meds will be stopped.
Her ANC dropped again. Now it's 180, so she's still neutropenic. Her hemoglobin & platelets are doing very good!
Gloria's funeral is today. Alicia has actually seemed fairly upbeat about things. Her and Jessica found a bible verse out of the blue that Gloria had written down. The verse fitted Gloria perfectly and that one verse has helped Alicia & Jessica cope with her passing.
Alicia, Mom, & Bryson will come back Cooks this afternoon after the funeral and lunch. Briley is ready to see her momma!
We slept the rest of the night up until about 8:30 this morning. We both woke up and Briley has been feeling great. She sat up in bed by herself for the first time! She's been coloring all morning. Ate a little bit of cereal, and is now talking on the phone with Alicia. She has not complained of any pain other than a wrinkled sheet underneath her foot.
The surgeon came in earlier and said things are progressing nicely. They will take out the foley cath at some point. So we have to learn how to use a bed pan. Her fever is also gone this morning! That is huge! She will be here another 2-3 days depending on fever & ANC. We will be doing a few transfers over to the wheel chair today and her continuous pain meds will be stopped.
Her ANC dropped again. Now it's 180, so she's still neutropenic. Her hemoglobin & platelets are doing very good!
Gloria's funeral is today. Alicia has actually seemed fairly upbeat about things. Her and Jessica found a bible verse out of the blue that Gloria had written down. The verse fitted Gloria perfectly and that one verse has helped Alicia & Jessica cope with her passing.
Alicia, Mom, & Bryson will come back Cooks this afternoon after the funeral and lunch. Briley is ready to see her momma!
Sunday, May 13, 2012
Sunday Night Update
I hope Alicia does not read this post. She is where she needs to be right now. Anyhow, things have not gone as easily as I thought they would thus far. Briley was not able to get pain meds during the blood transfusion that went on for 3 hours. About half way through it, she started hurting real bad. She was crying for momma. I did all I could do to comfort her, but without luck. She became nauseated but never vomited. It tore me up inside knowing that she was hurting so bad and there was nothing that I could do personally for her, other than hold her hand and rub her head. The nurse we had today was great! She stopped the blood transfusion, gave her zofran, and hooked her pain meds back up. She started feeling much better and quit crying once she got her pain meds. The nurse started the transfusion again and she finished it without any problems.
Briley is doing great right now. She is sitting up in bed coloring while watching Cars. We've watched Cars non-stop for the past 2 days! Everything that needed to be done tonight is over with. She will have vital checks at midnight and then again at 4am. Hopefully both of us will get a good night's rest. I will warn the nurse that I tend to snore, loudly, sleeping in a recliner! Speaking of that, Bryson slept with me last night, but when I woke up, he was in bed with mom. I guess he couldn't take my snoring anymore!
Briley will not fall asleep without holding my hand. As soon as she does off, she suddenly jumps and says she's falling. She has done this several times today and yesterday and never has done that before. I think she is having nightmares about the wreck.
I'll be ready for Alicia to get back down here tomorrow. I wish that I could be there for her at the funeral, but I've got to be here with Briley.
We appreciate everyone's kind words and gestures. We appreciate it more than you'll ever know!
Briley is doing great right now. She is sitting up in bed coloring while watching Cars. We've watched Cars non-stop for the past 2 days! Everything that needed to be done tonight is over with. She will have vital checks at midnight and then again at 4am. Hopefully both of us will get a good night's rest. I will warn the nurse that I tend to snore, loudly, sleeping in a recliner! Speaking of that, Bryson slept with me last night, but when I woke up, he was in bed with mom. I guess he couldn't take my snoring anymore!
Briley will not fall asleep without holding my hand. As soon as she does off, she suddenly jumps and says she's falling. She has done this several times today and yesterday and never has done that before. I think she is having nightmares about the wreck.
I'll be ready for Alicia to get back down here tomorrow. I wish that I could be there for her at the funeral, but I've got to be here with Briley.
We appreciate everyone's kind words and gestures. We appreciate it more than you'll ever know!
Sunday Afternoon Update
Well, it's just me & Briley sitting in the hospital room. All is quite. Alicia rode back to Seymour with Mom, Dad, & Bryson so that she can attend the prayer service for Gloria.
Briley's counts continue to drop. She finished getting a platelet transfusion a while ago and is now getting a blood transfusion. Her ANC also dropped to 280. The trauma & oncology doctors do not seemed to be worried about the count drops, so we'll try our best not to let it bug us as much. Like the trauma doc told us, our mindset is in the cancer world, but it is actually the trauma causing these drops since Briley had such serious injuries. Her fever remains constant also.
She is not receiving pain meds while she is getting the blood transfusion. The transfusion will take 3 hours to run, so if she can make it through the duration without pain meds, that would be a big step forward! So far, so good. I haven't heard her complain about pain while she's been laying in bed. Only time she has complained was when we moved her to the wheel chair & back.
She has ate more today and drank lots of liquid. Her urine isn't as dark as it has previously been.
Tomorrow will be a big day as we have numerous events happening. We will have to order a wheel chair. We will also have to order a specialized car seat. We'll get our vehicle situation figured out eventually, but first thing first.
I was very humbled earlier today. A group of Fort Worth/Irving firemen that works part time in the ER came up and payed dad & myself a visit and brought the kids toys. It came to show that no matter if your volunteer or paid firefighters, we all put our pants on the same way and we all belong to a brother hood that understands each other. The talk with them was uplifting and I'm glad dad was there with me to be a part in the talk.
We didn't know what we were going to do with Bryson this coming week. I didn't catch all of the story, but thank you to whomever is giving mom the opportunity to take the week off so that she can keep Bryson and be there for us! I've caught myself almost telling Alicia that her mom could keep him. So giving mom this opportunity will be a large help!
This blog has been read about 4,300 times since the accident, so I'll apologize for my writing skills, spelling, grammar, and anything else that Alicia will correct me on! As far as Briley, we are looking forward to the happenings of tomorrow. For Alicia and her family, I pray that they may somehow find comfort.
Did I mention Troy Aikman & Garth Brooks will be here at the hospital on Tuesday?
Thank you for your continued support and prayers!
Briley's counts continue to drop. She finished getting a platelet transfusion a while ago and is now getting a blood transfusion. Her ANC also dropped to 280. The trauma & oncology doctors do not seemed to be worried about the count drops, so we'll try our best not to let it bug us as much. Like the trauma doc told us, our mindset is in the cancer world, but it is actually the trauma causing these drops since Briley had such serious injuries. Her fever remains constant also.
She is not receiving pain meds while she is getting the blood transfusion. The transfusion will take 3 hours to run, so if she can make it through the duration without pain meds, that would be a big step forward! So far, so good. I haven't heard her complain about pain while she's been laying in bed. Only time she has complained was when we moved her to the wheel chair & back.
She has ate more today and drank lots of liquid. Her urine isn't as dark as it has previously been.
Tomorrow will be a big day as we have numerous events happening. We will have to order a wheel chair. We will also have to order a specialized car seat. We'll get our vehicle situation figured out eventually, but first thing first.
I was very humbled earlier today. A group of Fort Worth/Irving firemen that works part time in the ER came up and payed dad & myself a visit and brought the kids toys. It came to show that no matter if your volunteer or paid firefighters, we all put our pants on the same way and we all belong to a brother hood that understands each other. The talk with them was uplifting and I'm glad dad was there with me to be a part in the talk.
We didn't know what we were going to do with Bryson this coming week. I didn't catch all of the story, but thank you to whomever is giving mom the opportunity to take the week off so that she can keep Bryson and be there for us! I've caught myself almost telling Alicia that her mom could keep him. So giving mom this opportunity will be a large help!
This blog has been read about 4,300 times since the accident, so I'll apologize for my writing skills, spelling, grammar, and anything else that Alicia will correct me on! As far as Briley, we are looking forward to the happenings of tomorrow. For Alicia and her family, I pray that they may somehow find comfort.
Did I mention Troy Aikman & Garth Brooks will be here at the hospital on Tuesday?
Thank you for your continued support and prayers!
Sunday Morning Update
Briley had a cbc this morning and it showed that all of counts continued to drop. Her hemoglobin - 8.1 Platelets - 77,000 ANC-360. She will get transfusions if her hemoglobin drops below 8.0 & if her platelets drop below 70,000. She is very close to getting both blood & platelet transfusions.
Her ANC (infection fighter) is very low. If it's under 500 then she is considered neutropenic. With her being neutropenic, she can not have visitors until her ANC goes back over 500 at the minimal. She usually stays around 1200 with the chemo that she is on & normal would be anywhere between 2,000-3,000.
These low counts are a bad reminder of when she was first diagnosed with leukemia. So we can't help but think about the possibility of relapse. However, her white cell count is very low, which is a good indicator that the leukemia has not relapsed. We are ready to see the oncologist today and ask questions!
I think a lot of it has to do with her situation. Her bone marrow is already suppressed from the chemo. Plus she fracture both femurs that contain a lot of bone marrow. Put all of that together and it will take her longer than a normal kid to bounce back. This is just my thought, we'll see what the oncologist says later.
She had a fairly good night last night. Respiratory woke her up at 4:00 this morning for a breathing treatment and that didn't go over well. She is doing great this morning. Not much complaining about pain thus far. We are going to try to put her in the wheel chair in a little bit. She needs to eat! We will work on that today.
Alicia is having a extra tough time today since it's Mother's Day. Please keep her in your prayers.
Alicia is going to try and go home this afternoon, but right now Briley wants her to stay here. So I don't know if she'll get to go. Dad is driving down today to visit. Mom & Bryson will go back today with dad.
I don't know what we are going to do with Bryson this coming week. Mom has got to go back to work. We love having him here, but he is such a ball of energy.
Her ANC (infection fighter) is very low. If it's under 500 then she is considered neutropenic. With her being neutropenic, she can not have visitors until her ANC goes back over 500 at the minimal. She usually stays around 1200 with the chemo that she is on & normal would be anywhere between 2,000-3,000.
These low counts are a bad reminder of when she was first diagnosed with leukemia. So we can't help but think about the possibility of relapse. However, her white cell count is very low, which is a good indicator that the leukemia has not relapsed. We are ready to see the oncologist today and ask questions!
I think a lot of it has to do with her situation. Her bone marrow is already suppressed from the chemo. Plus she fracture both femurs that contain a lot of bone marrow. Put all of that together and it will take her longer than a normal kid to bounce back. This is just my thought, we'll see what the oncologist says later.
She had a fairly good night last night. Respiratory woke her up at 4:00 this morning for a breathing treatment and that didn't go over well. She is doing great this morning. Not much complaining about pain thus far. We are going to try to put her in the wheel chair in a little bit. She needs to eat! We will work on that today.
Alicia is having a extra tough time today since it's Mother's Day. Please keep her in your prayers.
Alicia is going to try and go home this afternoon, but right now Briley wants her to stay here. So I don't know if she'll get to go. Dad is driving down today to visit. Mom & Bryson will go back today with dad.
I don't know what we are going to do with Bryson this coming week. Mom has got to go back to work. We love having him here, but he is such a ball of energy.
Saturday Night Update
Everyone is fast asleep and I finally had time to catch up reading messages on the blog, Facebook, & text messages. Please forgive Alicia & I for not responding back to many of them. Just know that we appreciate all of them!
Briley has done excellent this afternoon. She finally had her first bites to eat since the accident. First there was some ice cream. And then chips & hot sauce! One heck of a combination! Her pain is becoming less & less as the day drags on. She lays in one position for a while and becomes uncomfortable, but she doesn't tell us because it hurts her when we try to reposition her. She is still running fever around 100.5 with tylenol. We had a number of visitors today and Briley stayed awake all day! So I hope that she sleeps well tonight, as well as Alicia.
To the emotional side of the story: You know when something bad happens to someone and you want to say something, but you don't know what to say. Well, that's the way I am with my wife. She is understandably taking Gloria's death hard. She is strong when people are visiting, but once everyone leaves, she lets it loose. She just wants to pick up the phone and call her mom, but can't. I don't know what to say or do. She saw things Thursday night that will haunt her forever. Her faith in God is incredible! Many people could easily turn their backs on their faith in this situation, but her's grows stronger. She is an inspiration to us all and she certainly keeps my faith in check from time to time.
As for the hospital stays, it almost seems like the norm, just something different. I hate to say that, but it's true. I am proud of Briley. She is one tough cookie! She has been so cooperative with the doctors & nurses for a kid her age. I've been telling her how proud I am of her, how big she is, and how much I wish I could take her pain away and give it to me. Briley understands what happened. Alicia had a talk with her today about Nana and explained that she is in heaven with Jesus. Nana has had her time here on earth spoiling her grandkids, now it's time for her to be spoiled. Gloria, and her daughter Patricia, and her oldest grandkid Mason are now reunited. If anyone knew Gloria, they know that she was one of the nicest people that you could ever meet. She really did put everyone else first before her.
As for me, I really don't know what to make of all of it. As the man of the house, it's my job to provide & protect. I feel like I've failed in so many ways. I know that none of this is about me nor should it be but it's like somewhere in life I screwed up and now I'm getting it paid back by hurting the ones I love the most.
We'll see what tomorrow brings. I pray that Briley will continue to heal and her pain continues to decrease. Hopefully Briley will allow Alicia to go back home tomorrow afternoon. Alicia needs to be with family for a little while and see her mom for the last time. Monday is shaping up to be a busy day at Cooks, so I will have to stay with Briley. It's going to kill me to miss the funeral. I had the best mother-in-law ever.
We are thankful and very fortunate that our kids are still with us. We are also thankful for each one of you for taking your time to read this blog and praying for us. The outpouring of help & prayers has once again been awesome! Thank you so much!
Briley has done excellent this afternoon. She finally had her first bites to eat since the accident. First there was some ice cream. And then chips & hot sauce! One heck of a combination! Her pain is becoming less & less as the day drags on. She lays in one position for a while and becomes uncomfortable, but she doesn't tell us because it hurts her when we try to reposition her. She is still running fever around 100.5 with tylenol. We had a number of visitors today and Briley stayed awake all day! So I hope that she sleeps well tonight, as well as Alicia.
To the emotional side of the story: You know when something bad happens to someone and you want to say something, but you don't know what to say. Well, that's the way I am with my wife. She is understandably taking Gloria's death hard. She is strong when people are visiting, but once everyone leaves, she lets it loose. She just wants to pick up the phone and call her mom, but can't. I don't know what to say or do. She saw things Thursday night that will haunt her forever. Her faith in God is incredible! Many people could easily turn their backs on their faith in this situation, but her's grows stronger. She is an inspiration to us all and she certainly keeps my faith in check from time to time.
As for the hospital stays, it almost seems like the norm, just something different. I hate to say that, but it's true. I am proud of Briley. She is one tough cookie! She has been so cooperative with the doctors & nurses for a kid her age. I've been telling her how proud I am of her, how big she is, and how much I wish I could take her pain away and give it to me. Briley understands what happened. Alicia had a talk with her today about Nana and explained that she is in heaven with Jesus. Nana has had her time here on earth spoiling her grandkids, now it's time for her to be spoiled. Gloria, and her daughter Patricia, and her oldest grandkid Mason are now reunited. If anyone knew Gloria, they know that she was one of the nicest people that you could ever meet. She really did put everyone else first before her.
As for me, I really don't know what to make of all of it. As the man of the house, it's my job to provide & protect. I feel like I've failed in so many ways. I know that none of this is about me nor should it be but it's like somewhere in life I screwed up and now I'm getting it paid back by hurting the ones I love the most.
We'll see what tomorrow brings. I pray that Briley will continue to heal and her pain continues to decrease. Hopefully Briley will allow Alicia to go back home tomorrow afternoon. Alicia needs to be with family for a little while and see her mom for the last time. Monday is shaping up to be a busy day at Cooks, so I will have to stay with Briley. It's going to kill me to miss the funeral. I had the best mother-in-law ever.
We are thankful and very fortunate that our kids are still with us. We are also thankful for each one of you for taking your time to read this blog and praying for us. The outpouring of help & prayers has once again been awesome! Thank you so much!
Saturday, May 12, 2012
Address
For those of you that have asked:
Briley Hostas c/o Cook Children's
RM 4309
801 7th Avenue
Fort Worth, TX 76104
Just FYI, we may be out of that room on Tuesday, so if you don't think the things that are sent will be there by then, please do not send them as we won't get it. Alicia will be at the house at some point on Monday and will be coming back to Cooks after the funeral, so feel free to drop it off by the front door. I will have dad go by and put it in the house. Or you may drop it off at pawpaw's (Lavoye) at 600 N. Cedar. Alicia can stop by there and pick it up! Thanks!
Briley Hostas c/o Cook Children's
RM 4309
801 7th Avenue
Fort Worth, TX 76104
Just FYI, we may be out of that room on Tuesday, so if you don't think the things that are sent will be there by then, please do not send them as we won't get it. Alicia will be at the house at some point on Monday and will be coming back to Cooks after the funeral, so feel free to drop it off by the front door. I will have dad go by and put it in the house. Or you may drop it off at pawpaw's (Lavoye) at 600 N. Cedar. Alicia can stop by there and pick it up! Thanks!
Saturday Midday Update
Things are progressing nicely. A lot has happened since my last report this morning. One of the oncologist docs stopped in for a visit and said that it's not uncommon for chemo to be withheld for one reason or another. He was not worried in the least bit about relapse!!!! He also said that Briley should be able to stay on the research trial!!!!!! That is wonderful news. He de-accessed her
It's possible that Briley's broken bones were partly caused from the high doses of steroids that's she has been on for the leukemia. The steroids weaken the bones. There's no way of knowing how much of a factor the steroids played in the fractures.
The neck collar is off!!!! They also gave her a gel pillow. Those two things alone has made her feel so much better! She is now sitting in a wheel chair! Physical Therapy has already came in and started working with her. Her hemoglobin is still border line, so if it drops a little, she will get a blood transfusion.
She sat in the wheel chair for about an hour without complaining of pain, so that was great! Now we need to get her to eat. Once she starts eating good, they will take her off the continuous pain drip.
We have lots of guest right now and I'll update more later.
It's possible that Briley's broken bones were partly caused from the high doses of steroids that's she has been on for the leukemia. The steroids weaken the bones. There's no way of knowing how much of a factor the steroids played in the fractures.
The neck collar is off!!!! They also gave her a gel pillow. Those two things alone has made her feel so much better! She is now sitting in a wheel chair! Physical Therapy has already came in and started working with her. Her hemoglobin is still border line, so if it drops a little, she will get a blood transfusion.
She sat in the wheel chair for about an hour without complaining of pain, so that was great! Now we need to get her to eat. Once she starts eating good, they will take her off the continuous pain drip.
We have lots of guest right now and I'll update more later.
Saturday Morning Update
It is Saturday isn't it? Briley started running a fever last night. Of course, being that she is a cancer patient, fevers scare us. Briley is on the trauma floor, so the nurses & nurse prac are not familiar with Briley's leukemia situation. Alicia asked several times for her port to be accessed and antibiotics started. She was being denied.
Briley's fever kept rising. Finally the Oncology doc was paged up and guess what he wanted to do? They accessed her port and started her on antibiotics. They even sent a nurse from the Oncology floor up to the trauma floor to be Briley's nurse for the day! We are very happy about that.
We've been in this situation before, especially down in the ER. It's almost like everyone is scared to mess with a cancer kid. But I understand why. It's a specialty treatment plan design specifically for each individual child. And I know that they need the docs permission before doing certain things, but what they all need to understand is that us parents understand what needs to be done with our cancer kid more-so than any nurse outside of the oncology world. It's sometimes frustrating that certain people, not all of them, but some people get initials behind their name and think they know better than us parents who have been living this battle for the past year & 4 months. Especially the nurse prac on this floor. All it takes is a simple call to the on-call Oncology doc.
And guess what? Her temp has been going down since the start of antibiotics!
Alicia said that Briley rested on & off last night, but was not to bad. Briley is still hurting pretty bad this morning. The braces are very tight on her legs and with the swelling is making it very uncomfortable for her. The foley cath is also causing her some issues. Her belly is distended and they will give her some laxatives to help her poop. They tried to remove the neck collar last night, but Briley had some soreness, so they left it on. They said she could possibly have some ligament/tendon damage. She will either have a MRI on her neck or she will have to leave that dang thing on for 6 weeks, or both.
Her ANC (infection fighter) & her hemoglobin is down a little. She may get another blood transfusion. She also had a platelet transfusion last night and those counts are looking good this morning.
We hope that they will let her sit up in the bed today! It sounds like she will be here until Tuesday at the earliest. At some point, she will go to a therapy session to learn about using a bed pan, riding in a wheel chair, sponge baths, so forth. At some point, the child life specialist will sit down with Briley & maybe Bryson and talk about Nana and why they will no longer be able to see her. It's wonderful that they do things like that. It's been tough on all of us that she's gone. Bryson has already been asking where Nana is.
They have stopped her chemo until Monday at the earliest. So in the back of our minds we are worried about relapse. We also don't know if this will kick her off of the research trial and put her back on standard protocol. God I hope not.
I would give anything to trade places with her. I've been saying that since two January's ago. This little girl has been through more crap than I ever thought possible. But she is still here with us! That's the main thing. She & we will get through this.
This blog was viewed 1,800 times since the accident Thursday night. We truly appreciate everyone's kind messages, thoughts, and prayers. I'm sorry that I have not sent everyone back a message or text. Please understand that they are greatly appreciated and know that we do read them all. Please continue to pray for Briley's healing and also pray for Glenn, Ruth, Nathan, Alicia, & Jessica and all of Gloria's grandkids that they may somehow find comfort.
Briley's fever kept rising. Finally the Oncology doc was paged up and guess what he wanted to do? They accessed her port and started her on antibiotics. They even sent a nurse from the Oncology floor up to the trauma floor to be Briley's nurse for the day! We are very happy about that.
We've been in this situation before, especially down in the ER. It's almost like everyone is scared to mess with a cancer kid. But I understand why. It's a specialty treatment plan design specifically for each individual child. And I know that they need the docs permission before doing certain things, but what they all need to understand is that us parents understand what needs to be done with our cancer kid more-so than any nurse outside of the oncology world. It's sometimes frustrating that certain people, not all of them, but some people get initials behind their name and think they know better than us parents who have been living this battle for the past year & 4 months. Especially the nurse prac on this floor. All it takes is a simple call to the on-call Oncology doc.
And guess what? Her temp has been going down since the start of antibiotics!
Alicia said that Briley rested on & off last night, but was not to bad. Briley is still hurting pretty bad this morning. The braces are very tight on her legs and with the swelling is making it very uncomfortable for her. The foley cath is also causing her some issues. Her belly is distended and they will give her some laxatives to help her poop. They tried to remove the neck collar last night, but Briley had some soreness, so they left it on. They said she could possibly have some ligament/tendon damage. She will either have a MRI on her neck or she will have to leave that dang thing on for 6 weeks, or both.
Her ANC (infection fighter) & her hemoglobin is down a little. She may get another blood transfusion. She also had a platelet transfusion last night and those counts are looking good this morning.
We hope that they will let her sit up in the bed today! It sounds like she will be here until Tuesday at the earliest. At some point, she will go to a therapy session to learn about using a bed pan, riding in a wheel chair, sponge baths, so forth. At some point, the child life specialist will sit down with Briley & maybe Bryson and talk about Nana and why they will no longer be able to see her. It's wonderful that they do things like that. It's been tough on all of us that she's gone. Bryson has already been asking where Nana is.
They have stopped her chemo until Monday at the earliest. So in the back of our minds we are worried about relapse. We also don't know if this will kick her off of the research trial and put her back on standard protocol. God I hope not.
I would give anything to trade places with her. I've been saying that since two January's ago. This little girl has been through more crap than I ever thought possible. But she is still here with us! That's the main thing. She & we will get through this.
This blog was viewed 1,800 times since the accident Thursday night. We truly appreciate everyone's kind messages, thoughts, and prayers. I'm sorry that I have not sent everyone back a message or text. Please understand that they are greatly appreciated and know that we do read them all. Please continue to pray for Briley's healing and also pray for Glenn, Ruth, Nathan, Alicia, & Jessica and all of Gloria's grandkids that they may somehow find comfort.
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