That's right, one more spinal tap down and one to go (if my math is right). Alicia will get me in trouble if she reads this post. She does not like to look ahead. She is very grateful for how well things are going now and knows that things could instantly change. I on the other hand am counting down the days until the end of treatment. The nurses won't tell us when that will be, but according to the treatment plan, it should be March 30th. Since she has the LP's once every 3 months, then her last procedure would be in January! I can't help but to look ahead to when this nightmare will be over with, but at the same time I also know that things could very easily change. I also know that she still has two surgeries ahead of her. One for taking the rods out of her legs and another for taking the port out. But dang it, it's been a long road and I can't help but think of the day when we give her the last dose of chemo!
We got to the hotel around 9:00 last night. I've said this before, but there's something about staying in a hotel that causes kids to go bonkers! They finally feel to sleep around midnight and we were up at 6:30 to make a 15 minute drive to Cooks. We were about 15 minutes late!
Briley got her port accessed with some fussing. The worse thing about having the port accessed for any length of time is the bandage! It hurts coming off! Anyway, blood was drawn for a CBC and Zofran was infused in anticipation of nausea from the chemo she would eventually have. Her CBC looked good, although her ANC is still too high at 1850. Her ANC needs to be between 1000-1500. Platelets & hemoglobin were great! The doctor didn't want to increase her nightly chemo as we thought since her genetics shows her to be extremely sensitive to the nightly chemo (6mp). So the chemo (methotrexate) that she takes once/week was increased. She also started a 5 day run of steroids (dexamethasone) tonight. They also increased the steroid dosage because of her growth. We will start noticing her appetite increase in a couple of days along with a little bit of an attitude. Got to love the roids!
She finally went back to the procedure room. First she had chemo (vincristine) infused through her port. This chemo will give her nausea and make her feel bad. It also affects her feet by giving her a tingling feeling. She's had a lot of vincristine throughout her treatment, especially before the start of maintenance. Even before the wreck, she could not run normally. We believe it's because the vincristine side effects.
The spinal tap (LP) was next. We tried a new sedation (Nitrous) today so that she could drink some before the procedure. She got to decorate the mask she would be wearing before hand! And then she got to pick a "flavor" to breath while she had the mask on. She choose root beer of all things! The laughing gas worked great and I'm so glad we tried it. I think it knocked her respiratory down further than it should have at one point, but it was quickly corrected. The one thing about Nitrous, the effects of it doesn't take long to wear off! Anyway, about 10ml of spinal fluid was taken out and 10ml of methotrexate of injected in. They will view the spinal fluid to make sure that no leukemia cells are present. In this case, no news is GREAT news!
After the spinal tap, she woke up and is required to lay flat for 30 minutes so the the chemo can work it's way up the spinal column and around the brain. Bryson kept the nurses on their toes, running around and playing. He doesn't quite understand what is going on with big sister, but he has a good time no matter where he goes!
We left out of Cooks about 11:00 and started home. Briley didn't want to eat lunch at first, but then she decided that she wanted to go to CiCi's pizza. So we gave her more nausea meds before we went in and had a good lunch. Yes, we've learned by trial & error. Always carry nausea meds and always have a puke bag handy. Lucky, we haven't used the bag in a while!
We left out of CiCi's and the kids slept the entire way home.
Briley has not been feeling her best tonight. She's usually up and playing, but she just wanted to lay on the couch and watch tv. Her back started hurting at the LP site, so we gave her lortab. She also has a big bandage on her back that must remain on there for 24 hours. This is the only time that she gets out of taking a bath!
There was more than normal amount of blood on her bandage, so Alicia called the doc that did the procedure and doc said that everything was fine. It was normal to see some blood. We've never seen that much so it had us worried a little.
I can't say enough about Cooks, especially the oncology doctors and nurses. I hope it's the same at all children's hospitals, but we really feel that they go out of their way for our kids. The oncology folks see a lot of kids, but we really feel like we are one big family up there. Briley's doctor was not in the clinic today, but she came over from the floor just to see Briley & Alicia. She gives Alicia a hug every time she sees her. Also, nurse Claudia and child life Kate stopped in to see Briley, although they were not assigned to her today. And child-life Ms. Amy. What would we do without her! She is a God-send to that place! The Cooks oncology floor is just different from anywhere else you go. You are not treated like just another patient. We've been to other children's clinics that run kids through like cattle at an auction. I just can't say enough about the 5th floor at Cooks!
Just a little update on Kelly Livingston. If your read my last post, Kelly had acute liver failure for unknown reasons. She is a wife, a young mother of two, and a 3rd grade teacher here in Seymour. She had a successful liver transplant yesterday and still has a long road ahead of her. There's a lot of swelling going on so they have not closed her up as of yet. She should come off of the ventilator tomorrow. Please keep Kelly and her family in your prayers. Thank You!
Friday, October 5, 2012
Tuesday, October 2, 2012
Oct. 2nd Update
It's October and things have settled down and things are routine now. We love routine! Briley wakes each morning ready to go to school. She loves school! Bryson also, although it's hard to get him out of bed in the mornings! My schooling is going good, can't complain. I'm gone 3 nights out of the week, so by the time I get home, the kids are already in bed. I miss seeing them and it's been a little tough on Alicia getting both of them ready for bed by herself. We'll get through it and it will be worth it in the end!
I'm at home with Bryson today. He is sick. He has puss pockets on his tonsils, but he's tested negative for strep. Just a viral thing that's got to run it's course.
Briley has her every third month procedure scheduled for this Thursday, 10/4. She will get a LP (spinal tap), chemo infusion through her port, blood work, and start 5 days of dexamethasone (steroids). It's scheduled first thing in the morning, so we always stay in Fort Worth the night before. Unfortunately, Bryson will not be able to make the trip this time since he has been running a fever. Kids that are sick are basically banned from the oncology floor, which is a good thing. If they are oncology patients with fever, then they will be put into isolation. Anyway, I will have to keep Bryson home with me while Alicia & Briley go to Fort Worth. I'm a little nervous sending the girls down there by themselves to spend the night.
A couple of people have ask me recently about the LP's and the purpose of them. I'll do my best to explain. Leukemia cells love to hide in the spinal fluid. Although NO leukemia cells have ever been seen in her spinal fluid, that doesn't mean that they were not there. It's just impossible to look at every last drop of spinal fluid, as it is impossible to look at every last drop of bone marrow. Anyway, the nurses will conscious sedate her and the doc will insert a big needle inside a space in her spinal cord. The spinal fluid leaks out of the needle and into a tube. I believe they take out about 10cc's of fluid. The fluid is then replaced with the same amount of chemo. The chemo will then work itself up the spinal column into the fluid around the brain and hopefully kill any leukemia that it encounters along the way.
Briley does great during the procedure. She has been sedated with versed/fentanyl. This time we are going to try Nitrous Oxide (laughing gas). The reason for this is that it should work the same as the other, but she will be able to eat/drink before the procedure.
During the procedure, the child life gals keep her entertained playing games on the iPad. Thanks to the meds, she doesn't remember anything about the procedure. She does feel some pain during the insertion of the needle, but it's mostly just mild discomfort the rest of the time.
We appreciate it if you say an extra prayer for Briley and Alicia for safe travel and that the procedure will go according to plan. Also say a prayer for Kelly Livingston as she is in acute liver failure for unknown reasons. She's in ICU at a Dallas hospital right now as the doctors are trying to figure out what is going on.
Thank you for taking the time to read the updates! I will do another update after the procedure.
I'm at home with Bryson today. He is sick. He has puss pockets on his tonsils, but he's tested negative for strep. Just a viral thing that's got to run it's course.
Briley has her every third month procedure scheduled for this Thursday, 10/4. She will get a LP (spinal tap), chemo infusion through her port, blood work, and start 5 days of dexamethasone (steroids). It's scheduled first thing in the morning, so we always stay in Fort Worth the night before. Unfortunately, Bryson will not be able to make the trip this time since he has been running a fever. Kids that are sick are basically banned from the oncology floor, which is a good thing. If they are oncology patients with fever, then they will be put into isolation. Anyway, I will have to keep Bryson home with me while Alicia & Briley go to Fort Worth. I'm a little nervous sending the girls down there by themselves to spend the night.
A couple of people have ask me recently about the LP's and the purpose of them. I'll do my best to explain. Leukemia cells love to hide in the spinal fluid. Although NO leukemia cells have ever been seen in her spinal fluid, that doesn't mean that they were not there. It's just impossible to look at every last drop of spinal fluid, as it is impossible to look at every last drop of bone marrow. Anyway, the nurses will conscious sedate her and the doc will insert a big needle inside a space in her spinal cord. The spinal fluid leaks out of the needle and into a tube. I believe they take out about 10cc's of fluid. The fluid is then replaced with the same amount of chemo. The chemo will then work itself up the spinal column into the fluid around the brain and hopefully kill any leukemia that it encounters along the way.
Briley does great during the procedure. She has been sedated with versed/fentanyl. This time we are going to try Nitrous Oxide (laughing gas). The reason for this is that it should work the same as the other, but she will be able to eat/drink before the procedure.
During the procedure, the child life gals keep her entertained playing games on the iPad. Thanks to the meds, she doesn't remember anything about the procedure. She does feel some pain during the insertion of the needle, but it's mostly just mild discomfort the rest of the time.
We appreciate it if you say an extra prayer for Briley and Alicia for safe travel and that the procedure will go according to plan. Also say a prayer for Kelly Livingston as she is in acute liver failure for unknown reasons. She's in ICU at a Dallas hospital right now as the doctors are trying to figure out what is going on.
Thank you for taking the time to read the updates! I will do another update after the procedure.
Tuesday, September 18, 2012
September 18th Update
Wow, it's been 13 days since my last post!!! So much as happened since then. We'll start with Briley first and then the walk.
Briley's had a couple of CBC's since my last post. She actually had one today. Her ANC is 2100. That is good, but not really. With a high ANC, we really don't have to worry about infections being as serious as in low counts, but in the world of chemo & leukemia, her ANC needs to stay anywhere between 750-1500. Most relapses happen when the chemo doesn't keep the neutrophil count suppressed, so most relapses are seen with kids with high ANC's during maintenance therapy.
Now, we are not thinking that Briley has relapsed. I don't even want to think about it. We need to get her ANC down to acceptable levels. So, if her ANC is still high at her next Oncology appointment on 10/4, her nightly chemo dose will be increased. I don't quite understand why her ANC has been level since the start of maintenance, with the exception of the wreck, and now it's getting too high on the same dose. It pains me to give her chemo every night and now we are looking at increasing the dose. It's just more poison that will be in her little body. At the same time I realize that she needs it to stay cancer free.
School has been going great for both kids. Briley is staying busy with this and that. She has started dance class and will be signing up to join Girlscouts. She also goes to "church school" on Wednesday nights. That girl is busy busy.
Shifting gears a little, the CureSearch Walk went great!!!! Team Briley raised a little over $6,000!!! Eight teams joined together to raise awareness and funds for pediatric cancer research. All together, the walk raised a tad over $30,000!!! That is awesome!!! I'm am very proud and appreciative of our team and everyone else that came out and supported the walk. We had 250 folks registered to walk! The weather was great and we are proud to be involved with the planning committee! It was a good time had by all! My legs are still a little sore from the day's activities. We are looking forward to next year's walk! I'll leave with a picture of Team Briley at the 2012 Wichita Falls CureSearch Walk!
Briley's had a couple of CBC's since my last post. She actually had one today. Her ANC is 2100. That is good, but not really. With a high ANC, we really don't have to worry about infections being as serious as in low counts, but in the world of chemo & leukemia, her ANC needs to stay anywhere between 750-1500. Most relapses happen when the chemo doesn't keep the neutrophil count suppressed, so most relapses are seen with kids with high ANC's during maintenance therapy.
Now, we are not thinking that Briley has relapsed. I don't even want to think about it. We need to get her ANC down to acceptable levels. So, if her ANC is still high at her next Oncology appointment on 10/4, her nightly chemo dose will be increased. I don't quite understand why her ANC has been level since the start of maintenance, with the exception of the wreck, and now it's getting too high on the same dose. It pains me to give her chemo every night and now we are looking at increasing the dose. It's just more poison that will be in her little body. At the same time I realize that she needs it to stay cancer free.
School has been going great for both kids. Briley is staying busy with this and that. She has started dance class and will be signing up to join Girlscouts. She also goes to "church school" on Wednesday nights. That girl is busy busy.
Shifting gears a little, the CureSearch Walk went great!!!! Team Briley raised a little over $6,000!!! Eight teams joined together to raise awareness and funds for pediatric cancer research. All together, the walk raised a tad over $30,000!!! That is awesome!!! I'm am very proud and appreciative of our team and everyone else that came out and supported the walk. We had 250 folks registered to walk! The weather was great and we are proud to be involved with the planning committee! It was a good time had by all! My legs are still a little sore from the day's activities. We are looking forward to next year's walk! I'll leave with a picture of Team Briley at the 2012 Wichita Falls CureSearch Walk!
Wednesday, September 5, 2012
Research Appeal
I'm going to get off subject just a little and talk about the CureSearch walk coming up in a little more than a week and what it means to us and every other family of children fighting cancer. This is something that we believe in whole-heartedly because we know and we see how little funding is available for cancer kid research.
To put it best, for every cancer research dollar raised in the U.S., less than a penny of it is directed towards children's cancer.
To put the situation in perspective: I've mention Dr. Jensen a couple of times here on the blog and on Facebook. He is a children's cancer researcher from Seattle children's. He is presently trying to get FDA approval on a new cancer treatment, particularly leukemia, that will cure cancer without chemo or radiation!!!! He isolates the patient's own T-cell from their own blood, reprograms the DNA to attack the cancer cells, and injects it back into the patient. For 3 days, the kid may have no worse symptoms other than feeling like they have the flu!!!! And guess what, they are cancer free!!!
How awesome would that be?!?!?! Not only would this be only for children, but it would also be used in adults!!! Dr. Jensen says that he's cured mice, but now want's to cure kids.
It's a long, lengthy, and expensive process to get FDA approval. Funding is the only thing holding him back.
Feel free to google Dr. Jensen at Seattle children's and watch the video. It gives you chills seeing how close he is to having a cure!!!
I can only imagine Briley not having to get all of that poison to be cured. I want nothing more in this world for this treatment to get FDA approval.
This is only a small sample of things going on in research. This brings us to the CureSearch walk. 95% of what we raise for the walk will go into research! I know all of y'all have done so much for us in these past two years, but if you can, please consider giving to this wonderful charity by joining Team Briley. Remember, you do not have to be at the walk to be on the team. Simply sign up as a virtual walker! I will post a link to the team page. If you need help, feel free to email me jhostas@yahoo.com
For those of you that have already signed up, THANK YOU! It means so much to us that you have given to combat this awful disease called cancer!
A little update on Briley - She's doing great and loving school. She has a oncology appointment tomorrow at Cooks for count check, port flush, and doctor visit. Please pray for safe travels and that everything remains normal. I will update again and let y'all know how the appointment went. If you are ready this blog, I just want to say, THANK YOU!
Team Briley CureSearch Walk
To put it best, for every cancer research dollar raised in the U.S., less than a penny of it is directed towards children's cancer.
To put the situation in perspective: I've mention Dr. Jensen a couple of times here on the blog and on Facebook. He is a children's cancer researcher from Seattle children's. He is presently trying to get FDA approval on a new cancer treatment, particularly leukemia, that will cure cancer without chemo or radiation!!!! He isolates the patient's own T-cell from their own blood, reprograms the DNA to attack the cancer cells, and injects it back into the patient. For 3 days, the kid may have no worse symptoms other than feeling like they have the flu!!!! And guess what, they are cancer free!!!
How awesome would that be?!?!?! Not only would this be only for children, but it would also be used in adults!!! Dr. Jensen says that he's cured mice, but now want's to cure kids.
It's a long, lengthy, and expensive process to get FDA approval. Funding is the only thing holding him back.
Feel free to google Dr. Jensen at Seattle children's and watch the video. It gives you chills seeing how close he is to having a cure!!!
I can only imagine Briley not having to get all of that poison to be cured. I want nothing more in this world for this treatment to get FDA approval.
This is only a small sample of things going on in research. This brings us to the CureSearch walk. 95% of what we raise for the walk will go into research! I know all of y'all have done so much for us in these past two years, but if you can, please consider giving to this wonderful charity by joining Team Briley. Remember, you do not have to be at the walk to be on the team. Simply sign up as a virtual walker! I will post a link to the team page. If you need help, feel free to email me jhostas@yahoo.com
For those of you that have already signed up, THANK YOU! It means so much to us that you have given to combat this awful disease called cancer!
A little update on Briley - She's doing great and loving school. She has a oncology appointment tomorrow at Cooks for count check, port flush, and doctor visit. Please pray for safe travels and that everything remains normal. I will update again and let y'all know how the appointment went. If you are ready this blog, I just want to say, THANK YOU!
Team Briley CureSearch Walk
Tuesday, August 28, 2012
Briley goes to Kindergarten & Bryson to daycare!
Monday was a very exciting day for all of us!!!! Briley went to kindergarten!!!! Bryson also went back to daycare!!! I (John) also started Paramedic school (not so excited about that)! Anyway, having the kids going to school/daycare is a huge milestone for all of us! The kids have not been to daycare but only a handful of times since Briley's diagnoses nearly 2 years ago. We had to keep both of them out of daycare to help prevent sickness from being around a lot of other kids. Thankfully, we had the means to keep them home and I think it really helped Briley from getting sick. She's not out of the woods yet when it comes to sickness. It still can be very serious since her immune system is suppressed. But, if anyone knows Briley, she loves school! She loved going to daycare and she's extremely excited to be starting kindergarten this year!!! Bryson also started daycare full time. He likes going now and then, but not quite full time. He's had a great past couple of days there and I hope it keeps up!
Really, the biggest thing for us having the kids in school is that we can start becoming "normal" again. I cannot understate that. It's nice just to be normal. Yeah, Briley still has to take chemo, make monthly trips down to Cooks, and can't keep up with other kids, but we are now doing what everyone else is doing.
It's going to be nice for me also. Before Briley's diagnoses, I was working 4 jobs. I had to give up two of them so I could keep the kids at home. When I was working the truck, then Gloria would keep the kids. Now I can start working more and get rid of this "house husband" title that I've given myself.
KFDX channel 3 did another story on Briley going to her first day of school! I posted a link to the news story below. Just click on it to watch the story! KFDX & Ryan has been awesome telling Briley's story and we thank them so much. It's neat for us knowing that so many people are interested in and praying for Briley's recovery.
Briley's first day at school went great until about the end of class. Alicia happens to be her teacher. So she has a little problem with minding momma during class! Alicia says that Briley does good in the mornings, but the later it gets and the more worn out she gets, the less she minds momma/teacher. Hopefully that will resolve itself in time. But she had a great time. She jumped out of bed at 6:30 that morning ready to go and did she ever!
We are grateful to have Alicia has her teacher. This was done so that Alicia can keep an eye on Briley since she still has several limitations. The doc doesn't want Briley doing anything but walking. No running/climbing/swinging/sliding and that kind of stuff. Well, try to tell that to an active 5 year old in her first days at school! At least Alicia can maybe keep her from doing the really "dangerous" stuff like hanging upside down from the monkey bars!!!
Most importantly - She's a kid again!!!
Briley's news story
Really, the biggest thing for us having the kids in school is that we can start becoming "normal" again. I cannot understate that. It's nice just to be normal. Yeah, Briley still has to take chemo, make monthly trips down to Cooks, and can't keep up with other kids, but we are now doing what everyone else is doing.
It's going to be nice for me also. Before Briley's diagnoses, I was working 4 jobs. I had to give up two of them so I could keep the kids at home. When I was working the truck, then Gloria would keep the kids. Now I can start working more and get rid of this "house husband" title that I've given myself.
KFDX channel 3 did another story on Briley going to her first day of school! I posted a link to the news story below. Just click on it to watch the story! KFDX & Ryan has been awesome telling Briley's story and we thank them so much. It's neat for us knowing that so many people are interested in and praying for Briley's recovery.
Briley's first day at school went great until about the end of class. Alicia happens to be her teacher. So she has a little problem with minding momma during class! Alicia says that Briley does good in the mornings, but the later it gets and the more worn out she gets, the less she minds momma/teacher. Hopefully that will resolve itself in time. But she had a great time. She jumped out of bed at 6:30 that morning ready to go and did she ever!
We are grateful to have Alicia has her teacher. This was done so that Alicia can keep an eye on Briley since she still has several limitations. The doc doesn't want Briley doing anything but walking. No running/climbing/swinging/sliding and that kind of stuff. Well, try to tell that to an active 5 year old in her first days at school! At least Alicia can maybe keep her from doing the really "dangerous" stuff like hanging upside down from the monkey bars!!!
Most importantly - She's a kid again!!!
Briley's news story
Wednesday, August 22, 2012
Busy Busy
Things are starting to get busy around here. Alicia is getting her classroom ready. I'm getting ready to go back to school. Briley will be starting kindergarten next week! It's a very exciting time for all of us as you can imagine. Bryson will also start going back to daycare full time. He's only been to daycare a hand full of times since Briley's diagnoses, so I'm just a little worried about how he will do with it, but it will be good for him.
Alicia and I are getting busy with the CureSearch walk. We have registration forms for those of you that rather do it the old way and not online!
KFDX 3 will be doing one more story on Briley next week. They will do a story on her progress while at school! Stay tuned!
Briley's walking continues to improve. Her dance class will start up next month and she's super excited about that! She had a CBC done over the weekend and her counts look great! That's about all I have to report this time, until next, God bless!
Alicia and I are getting busy with the CureSearch walk. We have registration forms for those of you that rather do it the old way and not online!
KFDX 3 will be doing one more story on Briley next week. They will do a story on her progress while at school! Stay tuned!
Briley's walking continues to improve. Her dance class will start up next month and she's super excited about that! She had a CBC done over the weekend and her counts look great! That's about all I have to report this time, until next, God bless!
Saturday, August 11, 2012
August 11th Update
I've been severely lacking on my blogging duties! I apologize for that, but no news is good news!
Briley had an Cooks appointment this past Thursday. Alicia & the kids went to the appointment and then they went to Alicia's sister house over by Tyler for a few days. So it's just me in a quiet house.
Briley's appointment went well. Her ANC was at 910. It has been slowly declining over the past couple of months and 910 is the lowest it's been since the start of maintenance. There's no reason for concern at this point, but the doc wants to check her counts again in a couple of weeks. Below 500 is considered neutropenia, but I imagine that they will withhold chemo or change dosing if it gets below 750. I guess we'll see what it is in a couple of weeks. Her platelets & hemoglobin were both great!
Briley's walking has been improving slowly. She still has a noticeable hitch in her step. Since we are around her all the time, it's hard for us to notice how much she has improved walking over the past couple of weeks, however, other people that doesn't see her often can really tell how much better she is! It's been really good hearing that!
She will start school coming in less than a month! We are excited and scared for her. She won't be able to play like "normal" kids do. I don't know how that will affect her socially. I hope that her classmates will rally behind her and not leave her behind.
The loss of Gloria is still heavy on everyone's heart. Alicia seems strong on the outside, but really, she's still trying to cope with the loss. I think the same can be said with all of the kids. It's definitely been an adjustment. Glenn is still having a rough go of things. Gloria was such a presence in everyone's life, from her husband, to the kids, grandkids, her mom, brother, and sister, and people in the community. One thing we realize is that she's not missing us. She's rejoicing with the Angels in Heaven. She was an angel to us here on earth and I can't imagine that she's anywhere else but with the Lord. Death is terrible for us here on earth, but live your life right, obey God's commands, and believe, then death isn't so scary after all. Our goal in life should be to do everything possible to make it through the gates of heaven. This earth is only temporary. Heaven is eternity. We just have to get there! Once we are there, then oh-boy!!!!!! We've made it!!!!!! That feeling wouldn't even come close to comparing to winning an Olympic gold. It will be so much bigger than that! We just got to do what we can here to get there.
Ok, I'm done preaching. Here is a reminder. The CureSearch walk is about a month away, Sept 15th. If you've been thinking about signing up or donating, now is the time to do it! Go to www.curesearchwalk.org and click on the Texas on the map. You will then see the Wichita Falls walk and click on it. Then you will see Team Briley. You can click on it to join our team or you can make a general donation. Alicia & I have been on the planning committee for a while now. This is something near & dear to our heart as 94% of the money raised will go to research and education. I can tell you that there are some exciting research out there that the COG is partially funding that will cure kids with cancer WITHOUT chemo! And this is only a small part of what Curesearch & the COG is doing! Please think about donating to this wonderful cause. If you have any question, please feel free to ask and I'll do my best to answer them!
We appreciate each and everyone of you that takes the time to get on the blog and reads my gibberish.
Briley had an Cooks appointment this past Thursday. Alicia & the kids went to the appointment and then they went to Alicia's sister house over by Tyler for a few days. So it's just me in a quiet house.
Briley's appointment went well. Her ANC was at 910. It has been slowly declining over the past couple of months and 910 is the lowest it's been since the start of maintenance. There's no reason for concern at this point, but the doc wants to check her counts again in a couple of weeks. Below 500 is considered neutropenia, but I imagine that they will withhold chemo or change dosing if it gets below 750. I guess we'll see what it is in a couple of weeks. Her platelets & hemoglobin were both great!
Briley's walking has been improving slowly. She still has a noticeable hitch in her step. Since we are around her all the time, it's hard for us to notice how much she has improved walking over the past couple of weeks, however, other people that doesn't see her often can really tell how much better she is! It's been really good hearing that!
She will start school coming in less than a month! We are excited and scared for her. She won't be able to play like "normal" kids do. I don't know how that will affect her socially. I hope that her classmates will rally behind her and not leave her behind.
The loss of Gloria is still heavy on everyone's heart. Alicia seems strong on the outside, but really, she's still trying to cope with the loss. I think the same can be said with all of the kids. It's definitely been an adjustment. Glenn is still having a rough go of things. Gloria was such a presence in everyone's life, from her husband, to the kids, grandkids, her mom, brother, and sister, and people in the community. One thing we realize is that she's not missing us. She's rejoicing with the Angels in Heaven. She was an angel to us here on earth and I can't imagine that she's anywhere else but with the Lord. Death is terrible for us here on earth, but live your life right, obey God's commands, and believe, then death isn't so scary after all. Our goal in life should be to do everything possible to make it through the gates of heaven. This earth is only temporary. Heaven is eternity. We just have to get there! Once we are there, then oh-boy!!!!!! We've made it!!!!!! That feeling wouldn't even come close to comparing to winning an Olympic gold. It will be so much bigger than that! We just got to do what we can here to get there.
Ok, I'm done preaching. Here is a reminder. The CureSearch walk is about a month away, Sept 15th. If you've been thinking about signing up or donating, now is the time to do it! Go to www.curesearchwalk.org and click on the Texas on the map. You will then see the Wichita Falls walk and click on it. Then you will see Team Briley. You can click on it to join our team or you can make a general donation. Alicia & I have been on the planning committee for a while now. This is something near & dear to our heart as 94% of the money raised will go to research and education. I can tell you that there are some exciting research out there that the COG is partially funding that will cure kids with cancer WITHOUT chemo! And this is only a small part of what Curesearch & the COG is doing! Please think about donating to this wonderful cause. If you have any question, please feel free to ask and I'll do my best to answer them!
We appreciate each and everyone of you that takes the time to get on the blog and reads my gibberish.
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