Well, it's been a while since I've blogged three days in a row! Not for sure if that's a good thing, but I wanted to keep everyone updated on the kids.
We took Briley to the local clinic today for her fever. Although it came down some since last night, she needed to be seen. She was still running a temp around 100.0 and she had count check, blood cultures, and a flu swab. She tested negative for the flu! That's great! However, her ANC was lower than we want it at 740. Ideally, we want to keep it right around the 1000 mark. So she's not neutropenic, but she's getting there. 750 is the cut off, so after a call into her oncologist, she was given a shot of rocephin. She barely missed spending a week admitted to Cooks. If her temp was still as high as last night, she'd be at Cooks. Thankfully she's not and her fever continues to drop. It was 99.0 at last check and she's really felt great this afternoon! I'll keep her home again from school tomorrow.
Now on to Bryson. Cooks called Alicia this morning to confirm the MRI and asked for a $1000 payment up front. What!?!?!?!?! $1000 bucks for a MRI? Crazy! Come to find out, we have not met our family deductible for the year, just have met it on Briley (in 3 months time). So, after a little online research, Alicia asked the local pediatrician, Dr. Chu, about doing a sonogram on Bryson's leg. She totally agreed, so we took him to the Seymour hospital for the sonogram. Now getting Bryson to lay still was a challenge, but we somehow managed to hold him down long enough to get it done! We will get the report tomorrow, but by looking at it, it looks like a fluid filled cyst!!!!! That's great news!!!! The last thing we wanted to see was a solid tumor mass. Alicia and I can breath a little easier now. Hopefully, because of this, we can cancel the MRI scheduled for Thursday. After looking at a few things, the cyst should disappear on it's own in some time. Surgical removal would only be required if it started causing pain. We'll know more about it after tomorrow, but we are relieved.
We appreciate the prayers!!
Tuesday, December 4, 2012
Monday, December 3, 2012
Briley has a fever
Briley came home from school today running a fever. It's been constantly hanging around 100.7. For a short time, the fever got as high as 101.6.
Times like this it hits us again that our daughter is a cancer patient. If her temp gets up to 101.5 for any length of time, we have to take her to the ER to get her port accessed, blood work done, counts checked, and antibiotics started. The ER doc would then call the on-call oncologist at Cooks and go from there. If she is neutropenic and/or blood cultures come back positive, then she would have to go down to Cooks for an automatic week stay in the hospital.
She cannot have tylenol or motrin for her fever as this will only mask it. There's been the stomach bug and flu going around school, but she hasn't had any stomach issues. Hopefully it's just a 24 hour bug.
Briley has an oncology appointment on Thursday. If she's still running a temp on Wednesday, we will have to call them to see if they want her to come. The last thing they (and we) want is to infect the oncology patients with what she has.
Bryson will also have an MRI on his leg Thursday also. I really think it's a cyst, but only an MRI will tell us for sure. Just want to be safe. At least both Briley and Bryson's appointments are on the same day! That will save us a trip!
Times like this it hits us again that our daughter is a cancer patient. If her temp gets up to 101.5 for any length of time, we have to take her to the ER to get her port accessed, blood work done, counts checked, and antibiotics started. The ER doc would then call the on-call oncologist at Cooks and go from there. If she is neutropenic and/or blood cultures come back positive, then she would have to go down to Cooks for an automatic week stay in the hospital.
She cannot have tylenol or motrin for her fever as this will only mask it. There's been the stomach bug and flu going around school, but she hasn't had any stomach issues. Hopefully it's just a 24 hour bug.
Briley has an oncology appointment on Thursday. If she's still running a temp on Wednesday, we will have to call them to see if they want her to come. The last thing they (and we) want is to infect the oncology patients with what she has.
Bryson will also have an MRI on his leg Thursday also. I really think it's a cyst, but only an MRI will tell us for sure. Just want to be safe. At least both Briley and Bryson's appointments are on the same day! That will save us a trip!
Prayers for Bryson
We discovered a lump behind one of Bryson's knee on Saturday. I took him up to the doc this morning and he is being scheduled for a MRI. We hope and pray that it's nothing, but rhabdomyosarcoma does cross our mind and is something that we have to worry about.
Briley has an oncology appointment this coming Thursday, so Alicia has decided to take off of work and we'll take Bryson with us and let Briley's doctor glance at it. Please be nothing more than a cyst.
I hope everyone had a great Thanksgiving. Things were a little different for us this year. Gloria and maw maw are no longer with us and my Grandma was put in the nursing home. So much has changed this past year. We gathered in Munday for a feast, but had no gatherings on my side of the family. That's the first time that I know of neither my mom side or dad's side has not gathered. But I did cook a good pot roast for the 4 of us on Thanksgiving day!
Briley has an oncology appointment this coming Thursday, so Alicia has decided to take off of work and we'll take Bryson with us and let Briley's doctor glance at it. Please be nothing more than a cyst.
I hope everyone had a great Thanksgiving. Things were a little different for us this year. Gloria and maw maw are no longer with us and my Grandma was put in the nursing home. So much has changed this past year. We gathered in Munday for a feast, but had no gatherings on my side of the family. That's the first time that I know of neither my mom side or dad's side has not gathered. But I did cook a good pot roast for the 4 of us on Thanksgiving day!
Thursday, November 15, 2012
Happy, Happy, Happy!
Before I tell you why we are so happy, I want to first tell you about the video that I've mentioned in the previous post. I can not get that thing loaded onto this blog! Sorry. I've tried and tried. It is on Alicia & mine Facebook page. I will keep trying to figure out how to get it on here.
Now, it's happy happy happy time! Briley and I went down to Cooks today for her ortho appointment. After a round of x-rays, the doc came in and said that both of her bones have completely healed!!!!! Since she is doing so much better with her walking compared to two months ago, the doc is ready to take the rods out of her legs!!!!!! Awesome news!!!
We plan to schedule the surgery during Christmas break. It will be an out-patient thing and she'll be sore for a couple of weeks. This chapter in our lives will be coming to a close. All ( I use that lightly) we have to worry about is the oncology side of things after the rods are out.
We couldn't be more pleased. Thank you God!!!!!!
Alicia and I will find a day to get it done and will let y'all know what day it is. I figure she could use a prayer or two that day!
We appreciate everyone's prayers and well-wishes and we appreciate the cards from our friends in Haskell!
Now, it's happy happy happy time! Briley and I went down to Cooks today for her ortho appointment. After a round of x-rays, the doc came in and said that both of her bones have completely healed!!!!! Since she is doing so much better with her walking compared to two months ago, the doc is ready to take the rods out of her legs!!!!!! Awesome news!!!
We plan to schedule the surgery during Christmas break. It will be an out-patient thing and she'll be sore for a couple of weeks. This chapter in our lives will be coming to a close. All ( I use that lightly) we have to worry about is the oncology side of things after the rods are out.
We couldn't be more pleased. Thank you God!!!!!!
Alicia and I will find a day to get it done and will let y'all know what day it is. I figure she could use a prayer or two that day!
We appreciate everyone's prayers and well-wishes and we appreciate the cards from our friends in Haskell!
Saturday, November 3, 2012
Another trip to Cooks
Seeing that I ran into Alice in the grocery store and got in trouble for not updating the blog, I better get that done!
Briley and I went down to Cooks on Thursday for an oncology appointment/checkup. Briley did not want to leave school (she didn't want to miss recess)! Anyhow, I bribed her with IHOP when we get to Ft. Worth, so she was happy then!
We arrived at Cooks without any problems and went up to the oncology floor in the clinic. The child-life gals were still in a halloween mood so Miss Kate snuck up on Briley and scared her! Briley got her revenge by throwing crayons back at Miss Kate. So they had a little crayon fight!
We went back, Briley got weighed in, vitals taken, and back to the room we went. She decided to scare her doctor when she came in, so Briley hid under a table. Doc came in and Briley jumped out and said, "boo"!!!!! They had a good time with that.
Briley's port was accessed and blood taken for labs. A quick flush and she was done! She never cried or even as much whimpered once during the needle stick! I was so proud of her!
Her blood work came back very good. Her ANC was 1570. They like to keep it below between 1000 - 1500. So Briley's nightly chemo dose was increased be just a little. I hate increasing chemo, that just means more poison going into her little body, but whatever needs to be done not to relapse.
We left out of clinic and next stop - IHOP! After eating, we headed home without any problems.
We are very thankful to have a vehicle that we can rely on. Some families are not so lucky.
Halloween went very well and we had lots of fun! Briley dressed up as a daisy and Bryson was spiderman! I will try to post pictures once I get them on the computer.
I made a video of Briley of everything that she's been through. If I can figure out how to post it on here, I will do that. Warning: have some kleenex ready!!! And turn up the volume!
Briley and I went down to Cooks on Thursday for an oncology appointment/checkup. Briley did not want to leave school (she didn't want to miss recess)! Anyhow, I bribed her with IHOP when we get to Ft. Worth, so she was happy then!
We arrived at Cooks without any problems and went up to the oncology floor in the clinic. The child-life gals were still in a halloween mood so Miss Kate snuck up on Briley and scared her! Briley got her revenge by throwing crayons back at Miss Kate. So they had a little crayon fight!
We went back, Briley got weighed in, vitals taken, and back to the room we went. She decided to scare her doctor when she came in, so Briley hid under a table. Doc came in and Briley jumped out and said, "boo"!!!!! They had a good time with that.
Briley's port was accessed and blood taken for labs. A quick flush and she was done! She never cried or even as much whimpered once during the needle stick! I was so proud of her!
Her blood work came back very good. Her ANC was 1570. They like to keep it below between 1000 - 1500. So Briley's nightly chemo dose was increased be just a little. I hate increasing chemo, that just means more poison going into her little body, but whatever needs to be done not to relapse.
We left out of clinic and next stop - IHOP! After eating, we headed home without any problems.
We are very thankful to have a vehicle that we can rely on. Some families are not so lucky.
Halloween went very well and we had lots of fun! Briley dressed up as a daisy and Bryson was spiderman! I will try to post pictures once I get them on the computer.
I made a video of Briley of everything that she's been through. If I can figure out how to post it on here, I will do that. Warning: have some kleenex ready!!! And turn up the volume!
Monday, October 22, 2012
Briley's 1st school picture!
Hello folks! Things have been going very good around here. The steroids have worn off and things are back to normal for Briley. Bryson is still enjoying his school. Briley will go back to Cooks in a couple of weeks for a checkup. Until then, I wanted to share Briley's very first school picture with y'all!
Wednesday, October 17, 2012
Whew.......What a range of emotions today. It really has nothing to do with Briley or us, but with other families that we have met while at Cooks. I don't know how to explain this, but when you have a kid with cancer, it's like joining an exclusive "club" that no-one ever wants to be a part of, but you instantly become connected with others that have traveled the journey. With that being said,
My heart is over joyed that tomorrow will be Lianna's very last day of chemo! We met Lianna and her family when Briley was first diagnosed. Lianna is a few months ahead of Briley in treatment and was actually bald and in the hospital due to sickness at the time we met. Plus it seemed like we were always in clinic together or Briley & Lianna were scheduled for LP's on the same days. We've been keeping up with her on Facebook. I can't tell you how happy we are that her treatments will end tomorrow!
Now, on the other hand, is Tatum. We actually met Tatum and her family when she was in for her very last LP. Come to find out later, Tatum had relapsed. I can't imagine Briley relapsing, but being so close to being totally done with treatments, I just can't imagine. I was on Tatum's caring bridge page a while ago. She just had her first rounds of radiation. Tatum's mom is a great writer and does a great job with the blog. I hurt for Tatum and her family. Tatum is doing good with treatments, but I just can't imagine having to put Briley through everything all over again with radiation and 29 days of steroids. Her family has to stand behind a thick lead door watching their daughter getting radiation. The poor little girl is having to fight a tough battle. Tatum is about as tough as they come and I pray for her & her family that they can conquer the leukemia.
And then there's Mr. Jude. Jude and his family live in Wichita and he was recently diagnosed with leukemia. Their journey has just begun and he is going through the Induction phase, which is by far the hardest phase to go through. Everything is new, he's on 29 straight days of steroids plus all of the chemo. Thankfully, tomorrow is the last day of induction and things will get easier! Alicia and I are always available to answer any questions, not that we know it all, but we've been down that path and hopefully we can ease some anxieties. He's a tough little boy and I have confidence and I pray that his journey will go smoothly. If you get a chance, please say a prayer for these kids.
The wide range of emotions got me fired up a little today. So here we go:
Since it's October, we hear so much about pink this & pink that. Don't get me wrong, I'm all for breast cancer research, awareness, and so fort. But we try so hard to raise awareness to childhood cancer and most will turn a deaf ear to it. Trust me, I remember the days before Briley's diagnoses. I didn't know a thing about childhood cancer. I didn't know any kids with cancer, but I sure knew plenty of folks with breast cancer, including my mom, two aunts, and a young wife of my co-worker. All cancer's suck and they are all terrible. But when you've walked in our shoes, been through what Briley, Lianna, Tatum, Jude, & Gracie has, and have seen other kids die from cancer, it changes you. It changes everyone that's traveled down this path. These kids don't have a voice. They don't have a say. It's up to us to speak for them. If childhood cancer had half of the awareness as breast cancer, then we would be getting somewhere. But it's considered a "rare" disease. I don't think it's rare at all. Not when 36 kids will be diagnosed with cancer every day. Not when cancer is the #1 disease killer of kids. That's more than AIDS, asthma, something else and something else, combined (sorry, I can't remember the other diseases)! And unless you've been in our shoes or have listening to any of the 'preaching' I've done throughout the past year & half, then you wouldn't realize just how underfunded childhood cancer research is. Pharmaceutical companies could care less because there is not a market for new and improved drugs. Sad but true.
October can have pink. That's fine. I'm just about tired of having pink shoved into my face. From being asked to wear pink to school, or pink out Facebook, or buy pink FD shirts, or watching NFL with pink jersey's. I can't turn on the news with hearing about pink. Let me say again. I'm not at all against raising money for breast cancer. We've donated to breast cancer causes and still do. One of my inspirations is my co-workers wife that had a bad go of breast cancer and she was able to conquer it! I can't say that I'm not jealous of all of the attention that breast cancer gets, because I am. But, I am for a reason. I am because I've watched my 5 year old daughter fight this disease for nearly 2 years. We've watch other kids suffer and die. Kids deserve to be kids. Not stuck in a hospital in isolation or confined to the house, not able to go outside and play. A parent should never have to attend their kid's funeral for any reason, much less because of cancer. A parent shouldn't have to stand behind a lead door watching through thick glass as their kid lays on a table getting radiation shot into their little bodies. Lots of folks have done amazing things for us and Briley, but only a few has joined the cause. I really hope that some day we'll see more gold ribbons out there. September is childhood cancer awareness month (Yup, I'm a month late). So let's all wear gold in September and pink in October!
My heart is over joyed that tomorrow will be Lianna's very last day of chemo! We met Lianna and her family when Briley was first diagnosed. Lianna is a few months ahead of Briley in treatment and was actually bald and in the hospital due to sickness at the time we met. Plus it seemed like we were always in clinic together or Briley & Lianna were scheduled for LP's on the same days. We've been keeping up with her on Facebook. I can't tell you how happy we are that her treatments will end tomorrow!
Now, on the other hand, is Tatum. We actually met Tatum and her family when she was in for her very last LP. Come to find out later, Tatum had relapsed. I can't imagine Briley relapsing, but being so close to being totally done with treatments, I just can't imagine. I was on Tatum's caring bridge page a while ago. She just had her first rounds of radiation. Tatum's mom is a great writer and does a great job with the blog. I hurt for Tatum and her family. Tatum is doing good with treatments, but I just can't imagine having to put Briley through everything all over again with radiation and 29 days of steroids. Her family has to stand behind a thick lead door watching their daughter getting radiation. The poor little girl is having to fight a tough battle. Tatum is about as tough as they come and I pray for her & her family that they can conquer the leukemia.
And then there's Mr. Jude. Jude and his family live in Wichita and he was recently diagnosed with leukemia. Their journey has just begun and he is going through the Induction phase, which is by far the hardest phase to go through. Everything is new, he's on 29 straight days of steroids plus all of the chemo. Thankfully, tomorrow is the last day of induction and things will get easier! Alicia and I are always available to answer any questions, not that we know it all, but we've been down that path and hopefully we can ease some anxieties. He's a tough little boy and I have confidence and I pray that his journey will go smoothly. If you get a chance, please say a prayer for these kids.
The wide range of emotions got me fired up a little today. So here we go:
Since it's October, we hear so much about pink this & pink that. Don't get me wrong, I'm all for breast cancer research, awareness, and so fort. But we try so hard to raise awareness to childhood cancer and most will turn a deaf ear to it. Trust me, I remember the days before Briley's diagnoses. I didn't know a thing about childhood cancer. I didn't know any kids with cancer, but I sure knew plenty of folks with breast cancer, including my mom, two aunts, and a young wife of my co-worker. All cancer's suck and they are all terrible. But when you've walked in our shoes, been through what Briley, Lianna, Tatum, Jude, & Gracie has, and have seen other kids die from cancer, it changes you. It changes everyone that's traveled down this path. These kids don't have a voice. They don't have a say. It's up to us to speak for them. If childhood cancer had half of the awareness as breast cancer, then we would be getting somewhere. But it's considered a "rare" disease. I don't think it's rare at all. Not when 36 kids will be diagnosed with cancer every day. Not when cancer is the #1 disease killer of kids. That's more than AIDS, asthma, something else and something else, combined (sorry, I can't remember the other diseases)! And unless you've been in our shoes or have listening to any of the 'preaching' I've done throughout the past year & half, then you wouldn't realize just how underfunded childhood cancer research is. Pharmaceutical companies could care less because there is not a market for new and improved drugs. Sad but true.
October can have pink. That's fine. I'm just about tired of having pink shoved into my face. From being asked to wear pink to school, or pink out Facebook, or buy pink FD shirts, or watching NFL with pink jersey's. I can't turn on the news with hearing about pink. Let me say again. I'm not at all against raising money for breast cancer. We've donated to breast cancer causes and still do. One of my inspirations is my co-workers wife that had a bad go of breast cancer and she was able to conquer it! I can't say that I'm not jealous of all of the attention that breast cancer gets, because I am. But, I am for a reason. I am because I've watched my 5 year old daughter fight this disease for nearly 2 years. We've watch other kids suffer and die. Kids deserve to be kids. Not stuck in a hospital in isolation or confined to the house, not able to go outside and play. A parent should never have to attend their kid's funeral for any reason, much less because of cancer. A parent shouldn't have to stand behind a lead door watching through thick glass as their kid lays on a table getting radiation shot into their little bodies. Lots of folks have done amazing things for us and Briley, but only a few has joined the cause. I really hope that some day we'll see more gold ribbons out there. September is childhood cancer awareness month (Yup, I'm a month late). So let's all wear gold in September and pink in October!
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