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!