Briley is back home

I left out of Seymour around 5 this morning to make it to Ft. Worth in time for Briley's appointment at clinic. I arrived without any issues and met Alicia and Briley in the clinic waiting room. Alicia had numbing cream on both of Briley's arms and port. That's good, be prepared! Briley went back for vitals and blood draw out of one of the arms. I know it hurts by the way she cries, but I think most of it comes from anxiety than of the actual stick. The numbing cream works wonders.

The lab results came back. Her ANC was 650. So it is too low to start the next round of chemo (750). However, it is high enough for her to be able to come home! At first we were really disappointed that she could not begin the next round. We are ready to get through this phase. The doctor made us feel much better about it though. She explained that most kids are delayed 2 weeks, as Briley is. Also, since the next round will knock her counts down, it will actually be good that she will be able to build her counts up over 1000 before the round begins. That should help keep her from being knocked down so far and possibly keep her out of the hospital. We'll take that.

We left out of clinic, packed our stuff, ate lunch, and checked out of the RMH. Briley is trilled to be back home again. She is feeling very good right now. She's laughing and playing and running around. It's good to see her like that. Bryson is also happy that all of us are home again. He started crying in his sleep and we think it's the stress of not being home with us. All of this has been hard on him not understanding the situation. All we can do is try our best with both kids.

Briley's next appointment is next Thursday. Her counts will be above 750 by then, so the next round of the necessary evil will start. It will take her counts a couple of weeks to drop after beginning treatment. Until then, she will be free to come home on the days she's not getting chemo. We are hoping that she will be at the RMH only a couple of weeks during low counts.

We were thinking for the past week that she would have to stay at the RMH for a month straight. Oh how things change quickly. I gave up trying to schedule anything during July. Do what you gotta do, right? Home is wonderful!

Praying for good counts!!

Briley has to be at the clinic to see if her counts are high enough to start the last half of this round of chemo. She has felt great today, and has been fever free!! God has truly blessed her and has kept her fever and infection free!! Please keep Callie in your prayers. She had a malignant brain tumor, and had surgery last Thursday to remove the tumor. God is good, and all glory, honor, and praise is His!!

Update

Well, it seems like someone in particular doesn't get on here and blog if I don't.........and she complains about my country boy grammar! I've got to pick on Alicia a little bit.
Briley has been doing really well. No signs of sickness! It's been such a blessing that she hasn't been sick. Most kids are admitted during the period that she is in. She still has a few weeks of low counts ahead of her, so we are doing are best to keep her out of the hospital!
I know that they are tired of being couped up in a small room. It's bad when both Alicia and Briley look forward to going down to the laundry room just to get out of the confined space. But we have got to do what needs to be done. Any illness would be very serious at this point. At least Briley feels good and is back to playing.
We loaded the kids up yesterday and took a drive just to get out for a bit. Of course she wears a mask anytime she is out of the room. Anyway, we drove by the new Cowboy's stadium, the Ranger's ball park, and parked across the street from Six Flags and watched the roller coasters. Briley really enjoyed that.
When Bryson and I first got to the RMH on Monday, him and Briley hugged and said "I miss you" and held hands and were very sweet. That all lasted for 10 minutes and then it was back to fighting. Bryson and I came back home yesterday and went out to the lake and fished for a while without luck. He really loved being out there.
I'm working today and Bryson is in Munday with Nana. I will eave here at 5 in the morning to make it back for Briley's appointment. Hopefully she will meet counts and start the next part of this phase. We are ready to get it over with and get back home. She will still have to stay at the RMH at least another 3 weeks.
Thank you for the support and prayers. Please keep praying that she stays well.

John seems to be the resident blogger...so if anything is not spelled correctly or is grammatically incorrect, just know it's him!! Haha!! I love you!!

A Beautiful & Precious Little Girl (a.k.a. Briley)

 A BEAUTIFUL princess.

What a PRECIOUS smile!

Two little ANGELS!

Briley's Trip

I've mentioned this in a couple of post, but I haven't mentioned all the details on it. Some time back I posted the Team Briley Blog link on www.cancerkids.org. I really haven't thought much about it since then. It's a great website that you can read up on other kids with cancer. Bro. Terry with Richland Resources, an oil & gas exploration and production company, contacted us after finding Briley's story on the cancerkids website. Bro. Terry's boss, who is also a fellow Red Raider, has ask Terry to find a kid that they could help and to kick off the Hopewell foundation. Terry got in touch with Alicia and I by phone to discuss the possibility of a trip to a place Briley would like to visit. Although this company has done numerous charity work in the past, they have never done anything on an individual basis. This will be their first rodeo. Also, he is aware that Briley is eligible for the Make-A-Wish program. Terry mention that this may be a little less organize than Make-A-Wish and that he would have to "find" contacts to where ever Briley wanted to go.
We never gave their offer a second thought! I've mentioned several times before that I would like to give back in some way. I just didn't know how. Now I have found one way to give back! Yes, the company is giving this trip to us, but I would like to think that we'll be giving back to the future of this foundation in many ways. We have been very open in allowing Terry to be able to learn from us as being the face of pediatric cancer. Just has we've been very open to the COG research and surveys through various universities. I believe the more that the organizers of the foundation understand this life that we were forced to live, the better the foundation will be down the road for other kids. We are very excited to be a part of this!
Bro. Terry came to visit us yesterday at the RMH. He mentioned yesterday about the company picnic he was organizing for today. Alicia called earlier and said the Bro. Terry, wife, and son stopped by the RMH to drop off food and pies for anyone in the house to enjoy! It was wonderful that they thought of everyone in the house! I've heard the pies are just about gone already! And it sound like Briley was in a little better mood today also!
These are very good and sincere people. After talking to Bro. Terry yesterday about future programs they would like to start, I am honored that they have chosen us. We are very excited about this opportunity and it will definitely be a once in a lifetime trip for us.
Oh-yeah, where does Briley want to go? Disney World! We are looking forward to that day when our little princess is there drinking tea with a "real" princess! And just maybe me & Bryson can catch a real florida largemouth! There's one more surprise that we will probably never get to do again. The company will pick us up at the Seymour airport in their company jet! We are very thankful for this and that these great folks came into our lives. We have no idea as of right now when the trip will take place. Briley will first need to be in maintance chemo with approval from the doctor. We are thinking some time late fall at the earliest. Thank You Richalnd Resources!!

An evenful uneventful day

I'm sorry I didn't get to post yesterday, so I'll post yesterday news today. We slept in later then we have in a long time, 10:00! Not a lot today but sit around. Bro. Terry called and said that he was going to stop by and meet us! Bro. Terry is in charge of sitting up Briley's trip to anywhere she wants to go. I will make a separate post and fill you in on the trip and the foundation that is sending her. It was a pleasure to meet him and talk. He is a good 'ole country boy pastor so that speaks for itself! We filled him in on the diagnoses and talked briefly about the struggles of pediatric cancer. Briley was a little shy and not in the best of moods. Maybe that will change on the next visit. Sounds like this trip will be a once in a life time trip for all of us!
We said our goodbyes to Bro. Terrye and waited for Gloria to arrive. Alicia had won the ranger game tickets and we were wanting to get there early to look around for a while before the game. Sure enough, Gloria calls. She's lost. It's a straight shot from Seymour to Cooks. You never turn until Harris is right in front of you. I still don't know how she ended up on 820E in Saginaw. She even had a Garmin leading the way! I stayed on the phone with her and "navigated" her to the RMH. I couldn't ask for a better mom-in-law.
She arrived and Alicia and I went to the Rangers game and stayed in the motel where she won a free night stay. This was the first time her and I have been "out" together kid less since before Briley was diagnosed. We had a good time! The seats were great and I think both of us were more excited sitting fairly close to President Bush than the game! It was lots of fun. We needed that.
We got back to RMH this morning. Briley has been feeling very good! It's been over 2 weeks since she has gotten chemo so she is finally gaining her strength back. She's been laughing and playing. It's been a blessing to see her like this. I left out after lunch back to Seymour to be on call tomorrow and to get Bryson. I think I will take Bryson back to the RMH on Monday to spend the night. Briley misses him, but it won't be long before they are fighting again! I promise to post pictures of her on here. I just don't know how. Help me Audra! Alicia will post today's events a little later.
Thanks,
John

Heck of a day

Our day started out fairly early at 6:30 as we got up for Briley's appointment at the clinic. Of course we were tired since Briley thought it would be a grand idea to stay up till 1:00 in the morning. There is always something about a new place that causes kids to stay up and play. Briley was tired. We put numbing cream on both arms and her port to cover all needle stick places. Glad Press n' Seal works great holding the cream on! Anyway, both arms were wrapped with it along with her port. She didn't like it much.

We headed over to the clinic first for a blood draw and count check. Well.......her ANC was 40. I'm not surprised that it was to low to start treatment, but we are extremely surprised that it was that low. She doesn't have a immune system right now. Any infection would be life threatening at this point. It's very scary.

The doctor recommended staying at the Ronald McDonald House until her counts go back up. "How long would that be?", I asked. Doc said it would be a minimal of 3 weeks! wow.....3 weeks? gosh.......ok. Understandably, since Briley's ANC is so low and we live 2.5 hours away, she wants Briley close just in case.

So I had to apologize to Alicia for packing so much.

We thought that we would get to come home today, if not on Sunday. Boy were we wrong. That's cancer life.

We are now living at the Ronald McDonald House, room 213. It's going to be a long 3 weeks. With her counts being so low, Briley is isolated to her room. So basically she will be stuck in this little room for 3 weeks. The room didn't have a tv in it when we got here! Thanks to my friend Erwin, he brought over a old TV and dvd player that he's not using anymore. Plus I signed up on Netflix to be able to watch movies on the computer. Erwin and I tried connecting the laptop and tv so Briley could watch movies from Netflix on the tv. But after a trip to BestBuy, it's looking like the tv is to old for the high tech devices. Oh-well, she can check out dvds from the RMH libary or watch Netflix on the laptop or ipad.

Without sugar coating anything, this is really hard. I know that we have met people much worse of than us, but this has been really hard. She has been doing so good (and still is) but her counts are terrible. Plus it will be really hard to keep an active 4 year old kid couped up in a small room for 3 weeks or more. But we will deal with it and thank God that this is all we have to worry about. In the big picture of things, being stuck here isn't all that bad.

Mawmaw (Johnnie Sue) had her first chemo treatment today. Please keep her in your prayers as she has a very tough battle ahead of her. She is at Hendrix in Abilene. All of the grandkids went in together and bought her a laptop so we can skype and most importantly, so that she can play farmville while away from home! It's been a terrible past couple of years for our family in regards to cancer. In less than 6 months apart, my mom had cancer, then Briley, then mawmaw. This is getting old.

I know I wrote a novel tonight. Alicia always tells me that I write too much on the blog. For those of y'all that know me know that I don't talk much so I guess I'm making up for it here! It's bed time. Thank you for the support and prayers. Briley has to stay fever free over the next few weeks. Please pray that she does along with praying for rain. God bless everyone.

John, Alicia, Briley, Bryson.

At the Ronald McDonald House

Since Briley's appointment is 7:15 tomorrow morning, we decided to drive to Ft. Worth Wednesday afternoon and stay at the RMH. We've had our share of trips leaving at 4:00 in the morning. The earlier appointments usually involve a spinal tap. She is scheduled to have one tomorrow. As with any surgery, she is not allowed to eat or drink after midnight. So it's much easier letting her sleep in until 7:00 than it is getting her out of bed at 4:30 and telling her she can't have anything to eat or drink.

Of course all of this depends on her counts.

I'm glad we have a room at the RMH just in case we are here for the next 4 days. It's sad that this place constantly stays full. I believe they have plans to expand in the near future. The RMH is a good place. They ask for a donation of $15/night that of which I'm happy to pay. Different organizations or companies come every evening around supper time and cook everyone in the house a meal. For breakfast and lunch, they provided groceries to make your own meal. You clean up after yourself, vacuum your own room, clean the bathroom, wash the sheets on the bed, ect. Only bad thing about it, they don't have TVs in the rooms or if they do, you can only watch VHS tapes from that the RMH provide. Thank you ipad and Netflix!

Briley has been drawing a lot of attention with her bald head. We met a lady on our way to check in whose 22 month old daughter has a malignant brain tumor. I can't imagine that. As you may know by now, I don't sugar coat Briley's treatment or the way she feels at times. And I've said before, "yes, we have it bad, but we don't have to look far to see someone else a lot worse off than we are". Briley is going to be cured, not everyone in this house or in that hospital can say that. I know the pain that we have been through, but yet I can't even realize what some of these families are going through. One thing is for certain is that we can't help but feel a connection with some of these families. It's almost like a "club" or a "organization" that no one wants to join, but at the same time, it's one that we will always be a part of and one that we can give back to and most importantly, one where we can help others.

We will update more tomorrow as we know more. Thank you for your prayers. God bless everyone.

Close Call

Briley has been running a low grade fever for the past couple of weeks. Her temp has been staying under the 100's until yesterday. She woke up congested with runny nose. Alicia took her temp and it was 100.3. That doesn't seem like much, but for her it is. At 100.5, it's a trip to Cooks for a week stay in the hospital.
Alicia called the clinic and they advised her to take Briley to our local hospital for a check up and a CBC. So we took Briley to see Larry and she still had some what of a red ear, but much better than it has been. Everything else checked out normal and we're thinking it's just sinus issues.
The CBC came back and her ANC is at 100. This is extremely low and the lowest that it's ever been. She is very very prone to infection right now. However, the good news that her hemoglobin (12) and platelets (120) are still very good!
To be able to start the 2nd part of this phase, her ANC must be over 750, platelets over 75, and hemoglobin over 7 (I think). I just don't see her ANC being over 750 by Thursday. This is very common and if that is the case, then they will delay starting the next part for a week. We should hear from the clinic today and hopefully decide something about Thursday.
The other big news of the day. Briley finally gave in and let Alicia shave her head. She just had a few clumps of hair here and there and it didn't look good at all. She wouldn't let us shave it for the past 3 days when it started really falling out. But she did last night and she looks even better than I would have imagine with that bald head! I promise I will try to post pictures on here by tomorrow. I just want to rub her head all day long!

Father's Day Update

Happy Father's day to all of the dads out there including mine and dad-in-law. I'm proud to be the father of two wonderful kids and I hope that I am a good example to them.

Briley is feeling much better now than the past couple of weeks. Amazing how coming off the steroids makes someone feel that much better. She's not 100% by any means, but it sure beats this time last week.

In the past couple of days her hair as been falling out. She is now almost bald. There is hair all over the house, bed, bathtub, and on house. We are going to see if she'll let us shave the rest off today. I will try to post pictures on here.

I know a lot of parents of kids that are bald or are different don't like their kids being stared at. I know we're not in their shoes, but in Briley's case, we don't care, let them look. Let your kids come up to us and ask us questions. If they don't want to ask us, then explain to them why she lost her hair and that she is still the same Briley. The kids in this town have amazed us how they have emptied their piggy banks for Briley or sent a card in the mail or drew her a get well picture. I know they will understand this.

I guess I'm having a hard time with the hair loss. It's hard for me being the father of my beautiful daughter and because it's a visual reminder that she has cancer. But thankfully it's been harder on me than on her. It has really helped her having friends from Cooks that are also bald. At 4 years old, she understands why. She's a smart girl.

We will go back on Thursday for 4 days if she meets count. We'll probably stay at the Ronald McDonald House during that time. We will continue posting updates and we appreciate everyone that follows along. I know there are lots of folks in town that say they read the blog everyday. THANK YOU!

John, Alicia, Briley, & Bryson

Cooks for CBC

We just got back from Cooks. Briley went in today for blood work. We were afraid that she would need a blood and/or platelet transfusions, however her counts were great! No need for the transfusions! Her ANC was still low, but up a little from last week. She is also feeling much better today and very talkative.

She will go back next Thursday and if she meets counts, then she will have a very long day of chemo treatments and a spinal tap. We will be there 4 days straight for 4 days of chemo.

Some exciting news: Alicia got a "out of the blue" call a couple of days ago from a pastor that has been following along with the blog. The company he works for wants to start a foundation similar to Make-A-Wish and would like Briley to be their first individual kid to benefit from it. Briley is eligible for Make-A-Wish, however I would love to help this company get this wonderful program off the ground and going. I've been wanting and waiting for the opportunity to give back in some way and I'm hoping this new program will open the door for many seriously ill kids to experience the same joys as Briley will. I have no doubt she will be a great leading example and we will be very open to the program to be able to learn from us as a cancer patient and family. I'm honored they have chosen us to take part in this.

I don't know if I was suppose to say anything about it yet, but we are excited. I will post more details about the company and the program after we get the green light to do so. We have been truly blessed from God to have to wonderful support from family, friends, and strangers. I know I've said it before, but I would hate to think how we would could get through this without all of the support and prayers.

Thank you very much,

John, Alicia, Briley, & Bryson

Update

A few people have asked about Briley and how things were going since we're not out and about much these days. Briley is not feeling well at all for the past few days. She sleeps a lot and when she's not sleeping, she sits on the couch playing with the ipad or watching tv. It's hard seeing a once very active kid not feeling good. And the worse is yet to come. Alicia called the clinic earlier today about Briley's behavior and they said it was normal considering the chemo treatments she is undergoing. We are very happy that she has this 2 week break before the next round begins.

I think a lot of her not feeling good is also due to the steroids. We've went through this before and now going through it again. She's gain a ton of weight and eats non-stop. Her favorite movie right now is "Cloudy with a Chance of Meatballs". However, she will lose most of that weight and probably more during the next round of chemo. That's when the nausea and vomiting will begin.

Her hair is noticeable thinning out. It is a matter of time before it's all out. But that's the least of my worries right now.

She goes back to clinic on Thursday just for blood work. Her ANC is very low right now and they are wanting us to go all of the way to Ft. Worth for blood work because they are expecting her hemoglobin and platelets to be low and she'll need transfusions.

Thankfully her last dose of steroids will be on Wednesday night and that should be the end of steroids!!!!

Please continue to pray for her as she is not feeling well and still has very hard chemo in a little over a week and lets all pray for rain!!!

The counts we knew were coming but didn't want to hear

We left out at noon yesterday for Briley's scheduled chemo treatment. We just got back from Cooks the morning before, so it made this trip seem like a very long trip. We got to the clinic without incident and blood counts were down. The D.I. phase started living up to it's expectations. Her ANC (infection fighters) had dropped from 2100 down to 360. Counts below 500 are considered critical and will require her to be hospitalized with any fever above 100.5. She is very prone to sickness right now and we are keeping her isolated in the house. She can't even go outside and play.
Anyway, the chemo treatment is not count dependent, so she went ahead and got chemo. This will knock her down ever further. The doctor was a little surprised that her counts dropped so fast. Doc also was considering admitting Briley since her counts were so low and she recently had the fever. But she allowed us to go home since we didn't have any bags packed and with us on the condition that we watch Briley very close and take her temp quite often throughout the day.
She is not feeling her best today and I don't blame her. We would like to take her to the Relay for Life tonight, but can't with her counts. It's going to be a long month or more and we are doing what we can to keep her out of the hospital. The house is spotless! Please continue praying for Briley as she is now in the hardest battle against leukemia.

ER Visit

Briley started running fever yesterday afternoon, and it reached 101.7. We left about 8:45 to head to Cooks, and she has an ear infection. Yesterday was also her 4th birthday, so that wasn't a good way to end it. They started antibiotics through her port, and she will be on an antibiotic at home also. Her counts still looked good, so we were able to come home. They did blood cultures, and hopefully they will be negative. We don't want her to have a 7 day minimum hospital stay. She will get more chemo tomorrow, and her counts should start dropping then. We were surprised that they hadn't dropped yet. She will have a 2 week break, then it's time to start her first round of 4 days of chemo. This is the worst chemo that is on her treatment plan if all goes according to plan. Please keep Briley in your prayers!! She has so many wonderful people praying for her, and God has so wonderfully answered them!! We are blessed!!

On the road and at the clinic again

Briley had yet another appointment with chemo yesterday. We got on the road about 30 minutes later than we wanted to thanks to me not wanting to get out of bed. That's what I get for working that night and having late night transfers.
oh-well, Bryson went with us this time. Briley loves having Bryson along for the ride and Bryson loves playing in the play room. Briley has been on steroids and it's starting to show. She had to have a frito pie breakfast at 5:30 that morning, so she got one! We finally left and got to Cooks around 8:20 that morning. The treatment went according to plan and her counts still looked really good. Her ANC count was high, but steroids will give a false high count. Her platelets and Hemoglobin are still looking good. However, we expect all the counts to start dropping at any point now.
We were extremely happy with the time frame that the clinic got us in & out. We were done at 11:00! The ride home was uneventful as both kids slept most of the way.
Briley was feeling good when we got home, so we took the kids out to a tank fishing. It wasn't long before she was ready to go to the house, but we manage to catch a few along with a big bull frog! The kids really enjoyed looking at the frog and Alicia asked, "is that where frog legs come from"? I'm afraid she will never eat another frog leg!
Briley is doing ok today. She is really tired and run down. She never takes naps during the day, but she has been sleeping a lot after the Doxorubicin treatment. At least the nausea and vomiting hasn't been an issue yet and the first steroid treatment has been completed.
Her next appointment is scheduled for the 9th. She will then have a two week break. If she meets counts, she will start the hardest part of this phase on the 23rd for 4 straight days of chemo. We'll be staying in the RMH during that time. We are dreading it, but are looking forward to getting it over with. Thank you for your support and prayers!