Wednesday, June 27, 2012
Briley in the NEWS on KFDX
Briley Hostas Takes Next Step , is the latest news coverage on Briley's progress. All coverage stories are located on the right of the blog.
Tuesday, June 26, 2012
Walking is slowly getting better
Briley is walking a little more each day, but it's still not what I anticipated her doing. We've have so much much going on in the next few weeks and I guess I'm just wanting things to go faster than what they are. I have to remind myself, patience!
She wants to walk! So that's a good thing! We don't have to force her to get up and walk. The more she walks, the faster she will get back into the swing of things. Her legs tire out quickly. By the afternoon, her legs are really sore and she doesn't walk. We try to give her as little pain meds as possible, but we may need to step it up a little just to get her back on her feet a little more.
We are going to Alicia's uncle Johnny's house tomorrow to let the kids swim in his pool. It will be great exercise for those little legs! And fun too!
There are noticeable differences in both of the kids since the wreck. Briley is now scared of the dark. Never has been before, but it's bad now. She also keeps asking why Nanna didn't see the truck coming and why they pulled over. Bryson doesn't want to be separated from Alicia or I. He always loved going out to my mom & dads, but he no longer wants to. He asked Alicia last night if he could go to Nanna's house when she got home from Heaven. I hope things improve eventually, and they will.
I'm just about ready for things to get back to normal.
She wants to walk! So that's a good thing! We don't have to force her to get up and walk. The more she walks, the faster she will get back into the swing of things. Her legs tire out quickly. By the afternoon, her legs are really sore and she doesn't walk. We try to give her as little pain meds as possible, but we may need to step it up a little just to get her back on her feet a little more.
We are going to Alicia's uncle Johnny's house tomorrow to let the kids swim in his pool. It will be great exercise for those little legs! And fun too!
There are noticeable differences in both of the kids since the wreck. Briley is now scared of the dark. Never has been before, but it's bad now. She also keeps asking why Nanna didn't see the truck coming and why they pulled over. Bryson doesn't want to be separated from Alicia or I. He always loved going out to my mom & dads, but he no longer wants to. He asked Alicia last night if he could go to Nanna's house when she got home from Heaven. I hope things improve eventually, and they will.
I'm just about ready for things to get back to normal.
Sunday, June 24, 2012
Info Needed
Someone sent Briley a barbie. You had written on there that you had a broken leg when younger, but just one and Briley must special.
If you are this person, we need your address!
Thanks
If you are this person, we need your address!
Thanks
Saturday, June 23, 2012
A new News story
Here is a link to the news story that was done today. I can't figure out how to post the link with the others, but Audra will when she gets back to town! Anyway, I hope this works for now. I will try to update more tomorrow on Briley's progress. Once again, thank you KFDX!
Briley Hostas Takes Next Step texomashomepage.comBriley Hostas has been fighting leukemia for the last few years. Then last month, she was in a horrible car wreck, but Briley is moving forward.
Briley Hostas Takes Next Step texomashomepage.comBriley Hostas has been fighting leukemia for the last few years. Then last month, she was in a horrible car wreck, but Briley is moving forward.
Thursday, June 21, 2012
Post Appointment Update
We left out this morning, tired, or at least I was. Only 4 hours of sleep last night. grrr
Anyway, a miracle happened this morning. We made to Cooks right on time! That never happens!
First stop at ortho. Briley had x-rays of both femurs. Her surgeon came in and said that the bones were healing nicely and the rods are were they are suppose to be. Soooooooo, she doesn't have to wear the braces anymore. And the big news is, she is allowed to start putting weight on her legs!!! Time for her to start walking again!!!! (more on that later).
All four incisions looks good. The bump on the side of her left knee is actually one of the rods. And it's swollen more than the other because of that rod irritating the surrounding tissue, but it's nothing to worry about.
They called over to Cooks home health for a walker and we were done there. Alicia and I were very excited to hear the wonderful news!
After ortho, up to the oncology floor we went. We first got to meet a parent who Alicia has been talking to on Facebook through a cancer page. Her 3 year old daughter has neuroblastoma and still has some tumor left on her spine. She's a precious little girl named Maddie. Please say an extra prayer for Maddie that she will win the fight against cancer.
Briley went back for a CBC & port flush. All of her counts looked great! Her ANC is 1400! Hemoglobin was 11.4 and platelets were 200,000+! All of this is good news! It looks like her counts have stabilized again!
Next month, on the 11th, she is scheduled for a lumbar puncture with chemo injection & vincristine through her port. She has these done once/3 months thanks to the research that she's on. Otherwise it would be once/month.
She usually doesn't feel good after the procedure, but perks up the next day. I really hope that this round doesn't affect her much since we have the kid's fishing tournament the next day! We'll play it by ear and she how she's feeling that morning of the tournament. We'll carry an extra zofran or two on the boat!
Really the only thing that has me a little worried about the tournament is from a sunburn! She takes methotrexate once/week by mouth, and she will get it injected into her spinal fluid the day of her lumbar puncture. One of the side-effects of methotrexate is sensibility to the sun and sunburns can be a big issue. I'm sure Alicia will smoother on the sunscreen!
Ok, back on track. After her appointments, we drove over to Pappadeaux's for lunch. Good stuff! Briley just had to eat some gator!
Then we decided to take the kid's to the Ft. Worth zoo. They enjoyed it very much! Bryson was super excited and was very good. He agitated the gorillas and the big croc wanted him for a snack! It was so humid there today, it was almost miserable, but we didn't care. The kids were having a blast!
Then it was time to come home. Both kids crashed within minutes of leaving the zoo. They were worn smooth out, as is their daddy!
We made our way home without any problems and couldn't wait to get Briley standing up and walking! We adjusted her little walker to fit just right and then it was the moment of truth!
The truth is - it's going to be a long road. It didn't really hurt her much, but her coordination is out of wack and her legs are very weak. She was not able to stand on her own. I stood behind her and supported her as she tried to take some steps, but that didn't work out to great either. Especially that left leg. It's lagging behind a little. The main thing is, she tried. She tried very hard and wanted to do it! And it will come with time. We will work with her as much as we can get by with and get her going again. It amazes me how the simple task of walking that most of us takes for granted can be so hard for others. I'm proud of her and we'll keep moving forward!
Briley was also able to take a real bath tonight! We've been laying her on the kitchen counter and washing her hair in the sink and giving her a sponge bath. So being able to sit in the bathtub again was a big deal!
I think the biggest surprise of the day has been Bryson's reaction to big sister trying to get back to doing normal again. He was rooting her on and hugging her when she was trying to walk. And then he was so excited for her when she was able to take a bath! He's love for her poured out tonight! He was one proud little brother!
All in all, today was a great day! We were blessed in so many ways and I want to thank each of you for praying for Briley. I think many prayers were definitely answered today! Words cannot express the gratefulness that we have from the support that we have received. Thank You!
Anyway, a miracle happened this morning. We made to Cooks right on time! That never happens!
First stop at ortho. Briley had x-rays of both femurs. Her surgeon came in and said that the bones were healing nicely and the rods are were they are suppose to be. Soooooooo, she doesn't have to wear the braces anymore. And the big news is, she is allowed to start putting weight on her legs!!! Time for her to start walking again!!!! (more on that later).
All four incisions looks good. The bump on the side of her left knee is actually one of the rods. And it's swollen more than the other because of that rod irritating the surrounding tissue, but it's nothing to worry about.
They called over to Cooks home health for a walker and we were done there. Alicia and I were very excited to hear the wonderful news!
After ortho, up to the oncology floor we went. We first got to meet a parent who Alicia has been talking to on Facebook through a cancer page. Her 3 year old daughter has neuroblastoma and still has some tumor left on her spine. She's a precious little girl named Maddie. Please say an extra prayer for Maddie that she will win the fight against cancer.
Briley went back for a CBC & port flush. All of her counts looked great! Her ANC is 1400! Hemoglobin was 11.4 and platelets were 200,000+! All of this is good news! It looks like her counts have stabilized again!
Next month, on the 11th, she is scheduled for a lumbar puncture with chemo injection & vincristine through her port. She has these done once/3 months thanks to the research that she's on. Otherwise it would be once/month.
She usually doesn't feel good after the procedure, but perks up the next day. I really hope that this round doesn't affect her much since we have the kid's fishing tournament the next day! We'll play it by ear and she how she's feeling that morning of the tournament. We'll carry an extra zofran or two on the boat!
Really the only thing that has me a little worried about the tournament is from a sunburn! She takes methotrexate once/week by mouth, and she will get it injected into her spinal fluid the day of her lumbar puncture. One of the side-effects of methotrexate is sensibility to the sun and sunburns can be a big issue. I'm sure Alicia will smoother on the sunscreen!
Ok, back on track. After her appointments, we drove over to Pappadeaux's for lunch. Good stuff! Briley just had to eat some gator!
Then we decided to take the kid's to the Ft. Worth zoo. They enjoyed it very much! Bryson was super excited and was very good. He agitated the gorillas and the big croc wanted him for a snack! It was so humid there today, it was almost miserable, but we didn't care. The kids were having a blast!
Then it was time to come home. Both kids crashed within minutes of leaving the zoo. They were worn smooth out, as is their daddy!
We made our way home without any problems and couldn't wait to get Briley standing up and walking! We adjusted her little walker to fit just right and then it was the moment of truth!
The truth is - it's going to be a long road. It didn't really hurt her much, but her coordination is out of wack and her legs are very weak. She was not able to stand on her own. I stood behind her and supported her as she tried to take some steps, but that didn't work out to great either. Especially that left leg. It's lagging behind a little. The main thing is, she tried. She tried very hard and wanted to do it! And it will come with time. We will work with her as much as we can get by with and get her going again. It amazes me how the simple task of walking that most of us takes for granted can be so hard for others. I'm proud of her and we'll keep moving forward!
Briley was also able to take a real bath tonight! We've been laying her on the kitchen counter and washing her hair in the sink and giving her a sponge bath. So being able to sit in the bathtub again was a big deal!
I think the biggest surprise of the day has been Bryson's reaction to big sister trying to get back to doing normal again. He was rooting her on and hugging her when she was trying to walk. And then he was so excited for her when she was able to take a bath! He's love for her poured out tonight! He was one proud little brother!
All in all, today was a great day! We were blessed in so many ways and I want to thank each of you for praying for Briley. I think many prayers were definitely answered today! Words cannot express the gratefulness that we have from the support that we have received. Thank You!
Wednesday, June 20, 2012
June 20th. Anticipation!
We are leaving out at 6:00 in the morning and heading down to Fort Worth for Briley's ortho & oncology appointments. Briley will have x-rays on her legs to see how much of her bones have fused back together. If all looks good, she will be able to start walking with a walker!
She's been moving her right leg around like crazy. She's able to hold it up and move it in circles. Her left leg is the one that has us a little worried. The incisions look great now, but her left knee is still swollen. She doesn't move it around near as much, if at all, as her right leg. She also has some sort of big bump on the side of her knee. So we'll see tomorrow. Lot's of anticipation going on in this household today!
After ortho, she will have just a regular oncology checkup. They'll access her port for a blood count and to give it a flush. We hope and pray that all is normal with her counts.
Not much to report since my last blog. Things are going about the same. We really are thinking about going to counseling, especially for Bryson's sake. Yesterday he was saying that all of his plastic animals are dead. Over & over. Alicia is going to make the call to them tomorrow and ask a few questions.
It's going to be a busy couple of weeks starting next weekend. We'll go to the Rangers game that Cooks is sending us to on the 30th of this month.
July 5th, Briley is going to a camp for Cooks cancer kids. Her age group will be only a day camp. We'll drop her off at Cooks to catch the bus first thing in the morning and then pick her up that afternoon. We're kinda nervous letting her go without one of us, but some of the child life gals will be going, so she'll know someone and will probably have a blast! And she's always wanted to ride in a bus!!
This past weekend, Briley received an invitation from Cooks to a kid's fishing tournament on Eagle Mountain Lake July 12th. I can say that I'm one happy and excited daddy. If anyone knows me, they know I love to fish and do a lot of tournament fishing. I've taken the kids fishing quite a few times and they love it also! So the fishing trip will be super cool, especially considering that we'll be going out in a boat will pro-fishermen! The same ones that I watch on TV! That may not be a big deal to Briley, but it's awesome for me! Bryson will be in fish heaven also! He's taken after his daddy when it comes to fishing. I think both kids will impress the pros. They've never fished with anything but a plastic worm and can cast & reel like a little pro! We are really looking forward to the trip.
We are hoping and praying that Briley's bones have healed enough to allow her to start walking and that her blood counts are normal with no signs of relapse. We appreciate if y'all would say a quick prayer for her also.
Thanks!
She's been moving her right leg around like crazy. She's able to hold it up and move it in circles. Her left leg is the one that has us a little worried. The incisions look great now, but her left knee is still swollen. She doesn't move it around near as much, if at all, as her right leg. She also has some sort of big bump on the side of her knee. So we'll see tomorrow. Lot's of anticipation going on in this household today!
After ortho, she will have just a regular oncology checkup. They'll access her port for a blood count and to give it a flush. We hope and pray that all is normal with her counts.
Not much to report since my last blog. Things are going about the same. We really are thinking about going to counseling, especially for Bryson's sake. Yesterday he was saying that all of his plastic animals are dead. Over & over. Alicia is going to make the call to them tomorrow and ask a few questions.
It's going to be a busy couple of weeks starting next weekend. We'll go to the Rangers game that Cooks is sending us to on the 30th of this month.
July 5th, Briley is going to a camp for Cooks cancer kids. Her age group will be only a day camp. We'll drop her off at Cooks to catch the bus first thing in the morning and then pick her up that afternoon. We're kinda nervous letting her go without one of us, but some of the child life gals will be going, so she'll know someone and will probably have a blast! And she's always wanted to ride in a bus!!
This past weekend, Briley received an invitation from Cooks to a kid's fishing tournament on Eagle Mountain Lake July 12th. I can say that I'm one happy and excited daddy. If anyone knows me, they know I love to fish and do a lot of tournament fishing. I've taken the kids fishing quite a few times and they love it also! So the fishing trip will be super cool, especially considering that we'll be going out in a boat will pro-fishermen! The same ones that I watch on TV! That may not be a big deal to Briley, but it's awesome for me! Bryson will be in fish heaven also! He's taken after his daddy when it comes to fishing. I think both kids will impress the pros. They've never fished with anything but a plastic worm and can cast & reel like a little pro! We are really looking forward to the trip.
We are hoping and praying that Briley's bones have healed enough to allow her to start walking and that her blood counts are normal with no signs of relapse. We appreciate if y'all would say a quick prayer for her also.
Thanks!
Friday, June 15, 2012
June 15th Update
Things are still going well, at least when talking about Briley's healing. But now, after a little more than a month since the accident, the reality of the situation is becoming more & more difficult to deal with.
Briley is tired of being in the wheelchair. At first, it was new, but the new has since worn off. Here and there she's said that she wishes that she could start running & playing again. Even Bryson started crying last night. When Alicia asked why he was crying, he said, "I want Briley to start walking"! But she's been doing great with the wheelchair and doesn't complain too much. A couple of days ago, she started having a bad cough and running a fever. The cough is getting better and the fever is now gone. Also, the one incision that was getting infected is looking a lot better and the swelling in that knee is less.
Bryson has been missing Nanna like crazy. He's been talking about her a lot and he told Alicia that he wanted to go to Nanna's house to see her after she's gets home from visiting heaven. Clearly, he doesn't quite understand the meaning of heaven yet.
As for me, I've been reflecting more and more on the night of the accident. I was able to zone it out for the most part up until now for whatever reason. Maybe because Mark and I were working together a couple of days ago. That's been the first time that we've worked together since the accident. But whatever the case, the images burned into my brain from that night has been bothering me.
And Alicia has been having trouble with the loss of her mom. Her and Jess have been talking a lot everyday about her. And Alicia has her moments when she breaks down.
So with all of that being said, Alicia and I have talked about all of us going to the trauma support services that were offered while we were at Cooks. I understand their way of counseling kids through play is great. I always kinda looked at counseling as a gimmick-type stunt. I am probably ignorant about it, but it's time to swallow some pride and go. I need to do what's best for Alicia & the kids (and myself), so it might be worth a try.
So, now that we got all of the depressive stuff out of the way, there has been some excitement! One of Briley's friends, Gracie, that she met at Cooks stopped by the house on Monday. We fed her, and her family! Gracie was undergoing treatments for Neuroblastoma when Briley was diagnosed. They are an awesome family and we were fortune enough to go up to Tulsa's curesearch walk and be a part of Team Gracie!
Gracie had scans at Cooks this past Monday (and they were clear)!!!!!!!!!! Since her & her family are about to move to Idaho, they made the drive to Seymour to visit. It was good seeing all of them again and we might just have to visit them in Idaho sometime in the future. Below is a picture of Gracie & Briley!
Alicia has been busy this past week planning for Briley's big birthday bash tomorrow! Briley is super excited to see and play with many of her friends!
We will go back to Cooks next Thursday, the 21st. She will have x-rays to see if her bones have grown enough back together to be able to walk! She will also have a routine check-up at oncology. Her ANC this past Wednesday was 2400! Which is great, but probably elevated due to the infection. At least it's high & not low!
Briley is tired of being in the wheelchair. At first, it was new, but the new has since worn off. Here and there she's said that she wishes that she could start running & playing again. Even Bryson started crying last night. When Alicia asked why he was crying, he said, "I want Briley to start walking"! But she's been doing great with the wheelchair and doesn't complain too much. A couple of days ago, she started having a bad cough and running a fever. The cough is getting better and the fever is now gone. Also, the one incision that was getting infected is looking a lot better and the swelling in that knee is less.
Bryson has been missing Nanna like crazy. He's been talking about her a lot and he told Alicia that he wanted to go to Nanna's house to see her after she's gets home from visiting heaven. Clearly, he doesn't quite understand the meaning of heaven yet.
As for me, I've been reflecting more and more on the night of the accident. I was able to zone it out for the most part up until now for whatever reason. Maybe because Mark and I were working together a couple of days ago. That's been the first time that we've worked together since the accident. But whatever the case, the images burned into my brain from that night has been bothering me.
And Alicia has been having trouble with the loss of her mom. Her and Jess have been talking a lot everyday about her. And Alicia has her moments when she breaks down.
So with all of that being said, Alicia and I have talked about all of us going to the trauma support services that were offered while we were at Cooks. I understand their way of counseling kids through play is great. I always kinda looked at counseling as a gimmick-type stunt. I am probably ignorant about it, but it's time to swallow some pride and go. I need to do what's best for Alicia & the kids (and myself), so it might be worth a try.
So, now that we got all of the depressive stuff out of the way, there has been some excitement! One of Briley's friends, Gracie, that she met at Cooks stopped by the house on Monday. We fed her, and her family! Gracie was undergoing treatments for Neuroblastoma when Briley was diagnosed. They are an awesome family and we were fortune enough to go up to Tulsa's curesearch walk and be a part of Team Gracie!
Gracie had scans at Cooks this past Monday (and they were clear)!!!!!!!!!! Since her & her family are about to move to Idaho, they made the drive to Seymour to visit. It was good seeing all of them again and we might just have to visit them in Idaho sometime in the future. Below is a picture of Gracie & Briley!
Alicia has been busy this past week planning for Briley's big birthday bash tomorrow! Briley is super excited to see and play with many of her friends!
We will go back to Cooks next Thursday, the 21st. She will have x-rays to see if her bones have grown enough back together to be able to walk! She will also have a routine check-up at oncology. Her ANC this past Wednesday was 2400! Which is great, but probably elevated due to the infection. At least it's high & not low!
Monday, June 11, 2012
June 10th Update
Things are still going well with Briley, but she is starting to develop an infection in one of her incision. She has a total of 4 incisions, one on each side of the knees. We've noticed that her left knee is still swollen and the inside incision appears to be infected. We've been dousing it with hydrogen peroxide throughout the day and at night we are putting an antibiotic cream on. We've also been keeping the braces off during the day to let it air out. It's starting to look a little better, but we'll get her on Rx antibiotics tomorrow.
She's been doing great with her braces off and moving her legs a good bit without pain. Hopefully the bones are healing and she'll be able to start walking in a couple of weeks!
Before the accident, Briley played on a T-ball team. She loved playing and had the opportunity to play only one game. Yesterday was the closing ceremonies, so we took her up there to be with her team. She was the center of attention when we got there. Lot's of kids surrounded her giving their well-wishes. It was a great sight to see! Briley on the other hand doesn't care to much for the attention. She is shy and doesn't speak. And it wasn't only yesterday, but anytime we are out and someone speaks to her, she shy's away. We appreciate everyone that stops and ask about her.
And to the grown-up that mentioned something about Briley getting lot's of attention in a rude type of way, I promise you that we would give anything for none of this to happen. We've never asked for any of this and we've never asked for anyone to do anything. For whatever reason, this town and beyond has pulled together and done amazing things for our Briley but there will always be the select few that will only be happy if they have something to gripe about.....
Anyway, off of my soapbox and back to the closing ceremony. Her team wore Team Briley shirts in support. So that was awesome! She had a lot of pictures taken and all of the kids got a pin. She was so proud of that pin! I'm glad that we got to take her to be with her teammates on the field one last time this year. I will continue to work with her & Bryson playing ball and they'll be ready to go next year! Bryson can already knock the cover off the ball!
Alicia has a doctor's appt. tomorrow in Wichita and I've got to work, so Ms. Beba & Mrs. Wright will keep the kids until Alicia gets back. The kids are super excited about having someone other than mom & dad at the house! Then Gracie and her mom may stop by tomorrow. Gracie & Briley became friends at Cooks when Briley was first diagnosed. At that time, Gracie was undergoing treatment for neuroblastoma. They live in Tulsa and are driving down to Cooks for Gracie's scans tomorrow. Please say a prayer that Gracie's scans are clear! Then hopefully they will be able to make the trek to Seymour!
She's been doing great with her braces off and moving her legs a good bit without pain. Hopefully the bones are healing and she'll be able to start walking in a couple of weeks!
Before the accident, Briley played on a T-ball team. She loved playing and had the opportunity to play only one game. Yesterday was the closing ceremonies, so we took her up there to be with her team. She was the center of attention when we got there. Lot's of kids surrounded her giving their well-wishes. It was a great sight to see! Briley on the other hand doesn't care to much for the attention. She is shy and doesn't speak. And it wasn't only yesterday, but anytime we are out and someone speaks to her, she shy's away. We appreciate everyone that stops and ask about her.
And to the grown-up that mentioned something about Briley getting lot's of attention in a rude type of way, I promise you that we would give anything for none of this to happen. We've never asked for any of this and we've never asked for anyone to do anything. For whatever reason, this town and beyond has pulled together and done amazing things for our Briley but there will always be the select few that will only be happy if they have something to gripe about.....
Anyway, off of my soapbox and back to the closing ceremony. Her team wore Team Briley shirts in support. So that was awesome! She had a lot of pictures taken and all of the kids got a pin. She was so proud of that pin! I'm glad that we got to take her to be with her teammates on the field one last time this year. I will continue to work with her & Bryson playing ball and they'll be ready to go next year! Bryson can already knock the cover off the ball!
Alicia has a doctor's appt. tomorrow in Wichita and I've got to work, so Ms. Beba & Mrs. Wright will keep the kids until Alicia gets back. The kids are super excited about having someone other than mom & dad at the house! Then Gracie and her mom may stop by tomorrow. Gracie & Briley became friends at Cooks when Briley was first diagnosed. At that time, Gracie was undergoing treatment for neuroblastoma. They live in Tulsa and are driving down to Cooks for Gracie's scans tomorrow. Please say a prayer that Gracie's scans are clear! Then hopefully they will be able to make the trek to Seymour!
Friday, June 8, 2012
Happy Birthday Briley!
Yesterday was Briley's birthday. She turned a big 5 years old! We are very happy and blessed to be celebrating another birthday! This one has meant more than any other birthday because she is still here to have one! I've been wanting to put up the waters slide for her birthday party, but last year her counts were to low and this year, she's in the wheelchair. Maybe next year. We had a small party yesterday and she got to open the gifts from us. Alicia is planning a bigger party for all of her friends to come to in a week.
Gloria was always an instrumental part of any birthday party and family function so it's been a little rough on Alicia not having her there to help and she is greatly missed. But, we are happy just to be having a birthday and a reason to celebrate!
Gloria was always an instrumental part of any birthday party and family function so it's been a little rough on Alicia not having her there to help and she is greatly missed. But, we are happy just to be having a birthday and a reason to celebrate!
Wednesday, June 6, 2012
CureSearch Walk Info
We have so many more new readers since the wreck so I will share info on the walk. Alicia and I, along with other parents of cancer kids in the Wichita area, have been planning a Curesearch walk since January. The walk will be on Sept. 15th at MSU in Wichita.
Most people have never heard of CureSearch. We certainly didn't until Briley was diagnosed. So what makes CureSearch so special? That's easy! CureSearch funds the COG (Children's Oncology Group) research. Briley is currently on a COG research trial and has participated in others. It's a really big deal for us because during this phase, Briley is getting 1/3 less chemo than she would on standard protocol. The survival rates are the same! We will always be worried about the late effects of the chemo, so anytime when we can put less poison into her body with the same outcome as standard protocol, we are going to do it! Thanks to this research, maybe it will become the standard!
What are late effects? Since these kids have very harsh chemo treatments at such a young age, they are candidates for issues later in life such as secondary cancers, osteoporosis, learning disabilities, ect. The current 5 years survival rate of all pedi cancers is 84%. However, if you look at the 30 years survival rates, they drop down to 67%. 30 years may seem like a long time, but in 30 years, Briley will only be 34 years old.
You may ask why don't we have a Relay for Life team or donate to the Leukemia & Lymphoma Society. Well, it's simple. We want the biggest bang for our buck going towards pediatric research. Unless you live in the pedi cancer world, it's hard to see the difference between adult & pedi cancers & research funding of the two. So little is given to the kids compared to adults. Yes, adult cancers are far more prevalent and I'm not about to call pedi cancer "rare", because it's not. But when you take into account that only one new drug in 20 years has been approve for pedi cancer is a little ridiculous. Why is that? Because there isn't a market for the pharmaceutical companies. Sad but true.
Ok, I got a little off subject, but the subject always gets me fired up. These kids shouldn't have to suffer like they do. We've met many cancer kids during our time at Cooks. Some of the kids that Briley played with have earned their angel wings. It's hard telling Briley that her friends have died because of the same disease that she has.
Back on subject - why we don't do Relay for Life. The American Cancer Society only gives .04% to pedi cancer research funding. The Leukemia & Lymphoma Society gives less than 4%. So you can do the math. I am not saying they are bad organizations, they are not. It's kinda like donating to Susan G. Komen for prostrate cancer research.
Since CureSearch is directly specifically towards pedi cancer research, they give 96%. I don't care what organization it is, but 96% going towards research & education is big!!! This is why we are planning the walk!!!
We would love to have you on Team Briley or you can form your own team. Also, you do not have to be present at the walk to be on the team. You can sign up as a virtual walker!
This link will take you to the Team Briley Curesearch page so you can sign up and help fight pedi cancer.
http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1015910&lis=1&kntae1015910=FD8C1717CFA646EB83BB9C7BFB404908&supId=0&team=4987111
Thank you for your consideration and we thank everyone that keeps up with the blog!!
Most people have never heard of CureSearch. We certainly didn't until Briley was diagnosed. So what makes CureSearch so special? That's easy! CureSearch funds the COG (Children's Oncology Group) research. Briley is currently on a COG research trial and has participated in others. It's a really big deal for us because during this phase, Briley is getting 1/3 less chemo than she would on standard protocol. The survival rates are the same! We will always be worried about the late effects of the chemo, so anytime when we can put less poison into her body with the same outcome as standard protocol, we are going to do it! Thanks to this research, maybe it will become the standard!
What are late effects? Since these kids have very harsh chemo treatments at such a young age, they are candidates for issues later in life such as secondary cancers, osteoporosis, learning disabilities, ect. The current 5 years survival rate of all pedi cancers is 84%. However, if you look at the 30 years survival rates, they drop down to 67%. 30 years may seem like a long time, but in 30 years, Briley will only be 34 years old.
You may ask why don't we have a Relay for Life team or donate to the Leukemia & Lymphoma Society. Well, it's simple. We want the biggest bang for our buck going towards pediatric research. Unless you live in the pedi cancer world, it's hard to see the difference between adult & pedi cancers & research funding of the two. So little is given to the kids compared to adults. Yes, adult cancers are far more prevalent and I'm not about to call pedi cancer "rare", because it's not. But when you take into account that only one new drug in 20 years has been approve for pedi cancer is a little ridiculous. Why is that? Because there isn't a market for the pharmaceutical companies. Sad but true.
Ok, I got a little off subject, but the subject always gets me fired up. These kids shouldn't have to suffer like they do. We've met many cancer kids during our time at Cooks. Some of the kids that Briley played with have earned their angel wings. It's hard telling Briley that her friends have died because of the same disease that she has.
Back on subject - why we don't do Relay for Life. The American Cancer Society only gives .04% to pedi cancer research funding. The Leukemia & Lymphoma Society gives less than 4%. So you can do the math. I am not saying they are bad organizations, they are not. It's kinda like donating to Susan G. Komen for prostrate cancer research.
Since CureSearch is directly specifically towards pedi cancer research, they give 96%. I don't care what organization it is, but 96% going towards research & education is big!!! This is why we are planning the walk!!!
We would love to have you on Team Briley or you can form your own team. Also, you do not have to be present at the walk to be on the team. You can sign up as a virtual walker!
This link will take you to the Team Briley Curesearch page so you can sign up and help fight pedi cancer.
http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1015910&lis=1&kntae1015910=FD8C1717CFA646EB83BB9C7BFB404908&supId=0&team=4987111
Thank you for your consideration and we thank everyone that keeps up with the blog!!
Tuesday, June 5, 2012
June 5th Update
No news is good news! We've just been hanging out, not doing much. Briley is still being a little champ about being in the wheelchair. She does not complain at all. She's still been pain free for the most part. Even the moves from the wheelchair to other places is less painful now. We thank God for that.
Her Birthday is in a couple of days, on the 7th. Alicia is coming up with games that she will be able to participate in with the other kids during her party. Briley has been helping plan and hopefully everything will turn out well.
We got more info on the Rangers game that Cooks is sending us to. It's actually through the Sunshine Kids Foundation. We'll actually be down on the field during batting practice which will be cool! We'll spend the night and maybe take in the dallas aquarium the next day.
We are missing Gloria more and more if that's possible. There's not a day that's been by that Alicia & Jessica hasn't spent a lot of time talking to each other about their mom. It's been rough, even on me. Her death and Briley's injuries have over shadow maw maw's death from a couple of months ago. I had the opportunity to sit down and talk to paw paw for a long while the other night. I'm glad I went over there and talk with him. He is still very emotional over maw maw's death and I need to make it a point to get by there more often.
Looking back over the past couple of years has just been hell for both sides of the family. I know time will make things better but good gosh. It's been taxing to say the least seeing pawpaw & mom upset over maw maw, and then Alicia, the kids, and her family over Gloria, and also dealing with Briley's injuries & cancer on top of that.
We'll weather the storm. The day that Briley is able to walk again will help a lot. And she will. We are blessed to be able to say that. I've never asked "why us". Rather, how can we make a positive out of everything bad that has happened? I've said this before after Briley was first diagnosed with leukemia, how can we give back. So much has been done for us that it's only fitting to do so. I think we have a good start in planning the Curesearch walk in Wichita Sept. 15. But I know more can be done........Time will tell and time will heal. Thanks!
p.s. I will post more info on the Curesearch walk for the new readers at a later time.
Her Birthday is in a couple of days, on the 7th. Alicia is coming up with games that she will be able to participate in with the other kids during her party. Briley has been helping plan and hopefully everything will turn out well.
We got more info on the Rangers game that Cooks is sending us to. It's actually through the Sunshine Kids Foundation. We'll actually be down on the field during batting practice which will be cool! We'll spend the night and maybe take in the dallas aquarium the next day.
We are missing Gloria more and more if that's possible. There's not a day that's been by that Alicia & Jessica hasn't spent a lot of time talking to each other about their mom. It's been rough, even on me. Her death and Briley's injuries have over shadow maw maw's death from a couple of months ago. I had the opportunity to sit down and talk to paw paw for a long while the other night. I'm glad I went over there and talk with him. He is still very emotional over maw maw's death and I need to make it a point to get by there more often.
Looking back over the past couple of years has just been hell for both sides of the family. I know time will make things better but good gosh. It's been taxing to say the least seeing pawpaw & mom upset over maw maw, and then Alicia, the kids, and her family over Gloria, and also dealing with Briley's injuries & cancer on top of that.
We'll weather the storm. The day that Briley is able to walk again will help a lot. And she will. We are blessed to be able to say that. I've never asked "why us". Rather, how can we make a positive out of everything bad that has happened? I've said this before after Briley was first diagnosed with leukemia, how can we give back. So much has been done for us that it's only fitting to do so. I think we have a good start in planning the Curesearch walk in Wichita Sept. 15. But I know more can be done........Time will tell and time will heal. Thanks!
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