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!!!