Wednesday, July 25, 2012

July 25th Update

Yes,'s been 10 days since my last update.  I will apologize for that now!  It's just been a little busy around here.
Briley's walking continues to slowly improve.  She still has a very noticeable limp when she walks, but that is to be expected.  The news crew stopped by last week and aired an update story on Briley this past Monday.  I will post a link to the story below.
Alicia and I went to a Rangers game with a couple of friends and without the kids!  This has been the first time both of us has been without the kids since the wreck and the first time the kids have stayed the night without at least one of us since last June.  It was nice to have some time for just the two of us!  The kids went to daycare and they loved it!  Briley more-so than Bryson, but they did good.  In fact, we thought Briley would be excited to see us after being gone for two days, but as soon as she saw Alicia come through the doors at daycare, she started crying.  She did NOT want to leave!!!!  She was having too much fun playing with the kids and doing projects!   Her legs were tired after two days of daycare and she's struggled with walking a little bit yesterday and today.
We are blessed that Briley has been progressing the way she has been.  She's been right on track in her recovery.  That's good, because things are about to get a little hectic and tough.  I'm starting Paramedic school this fall.  I was signed up and ready to start the school before Briley was diagnosed with leukemia, but of course, I had to drop the class.  I'll be gone every Monday, Wednesday, and Friday nights to class in Wichita for 2 semesters!  It's going to be rough, but ready to get it over with.
Briley has an oncology appointment Aug. 9th.  The nurses and doctors will be very excited to see her walking!  We appreciate everyone's support. 

Sunday, July 15, 2012

July 15th Update with Exciting News!

Thursday morning, we went to a the 7th Annual Ian Surratt Memorial Fishing tournament.  It was put on for some cancer kids from Cooks.  I believe there were about 20 kids fishing.  We first met at the marina on Eagle Mountain lake and had breakfast.  We are then matched up with some local anglers that fish the bigger tournament trails in the area.  We were paired with Monte and both kids were given a fish in pole, tackle box, and shirts.  They couldn't wait to get out on the water!  We first started fishing for sand bass.  Monte found them on the electronics, but they weren't feeding.  After a short time trying to get one to bite, we decided to find something easier to catch.  We found a little place by a different marina and started catching perch, and a lot of them!  Bryson was a little tired and cranky from staying up late and getting up early, but his attitude changed when he started catching fish!  We probably caught over 20 perch, and then it was time to head in.  Lunch was waiting for us when we got back and plaques were giving to each family and boater.  I couldn't be more proud of the plaque!  It was a great time and I'm differently looking forward to it next year!  And Bryson slept for 4 hours after leaving the lake!  

I guess the fishing trip did Briley a lot of good.  Here's the big news - she is walking WITHOUT assistance!!!!!  She no longer needs her walker or wheelchair.  Her & Alicia were in Alicia's classroom on Friday when Briley took on step without holding on to anything.  I guess something clicked, and she took off!  Granted, she's still very unsteady on her feet and walks a little bowlegged, but she's walking on her own!!!!   She is so proud of herself and that night, she walked every where around the house.  It was such a good sight to see and very emotional for Alicia and I.  Even little brother was excited for her!
As faith would have it, the steroids that she's on is affecting her walking.  Not only does the steroids give her an attitude and an appetite, it causes bone pain.  Especially in her legs.  So the stinking steroids have slowed down the walking process just a tad. Her last dose will be tomorrow morning and it will take a couple of days to completely get out of her system and she will be back to her normal self.  She always craves something different when she's on steroids.  This time it's spaghettios!  
We will go back to Fort Worth (again) on Thursday for her ortho checkup.  I hope and pray that the doctor will be please with Briley progress.  
There will be a blood drive here in Seymour this coming Tuesday at the Portwood Pavilion.  I encourage everyone to give blood if you are able.  Briley has had numerous blood transfusion and the importance of giving blood has really become apparent after her diagnoses and after the wreck.  Giving blood really does save lives!  Thank you for keeping up with Briley's progress!  

Thursday, July 12, 2012

LP/Fishing Tourney

We are back home now.  It's always good to be in your own house, even though we are being invaded by crickets! 
I talked briefly about her procedure yesterday, but I wanted to expand on it just a little.  The spinal taps, or otherwise known in "our world", as Lumbar Punctures (LP for short),  are done in accordance with the vincristine (chemo) and dexamethasone (steroids).  These rounds are called vincristine/dexamethasone pulses.  Under standard protocol, these are done once/month.  Thanks to the COG research trial she is under, they come around once/ 3 months.  
During the LP's, they take out 10cc's (I think) of spinal fluid (CSF) and replaces that same with Methotrexate.  Leukemia cells like to hide in the CSF.  Although no leukemia has every been found in Briley's CSF, it's done for precautionary reasons.  Just one cell can cause a relapse.  That's the reason for 2.5 years of chemo.  
The dexamethasone is taken 2mg twice a day for 5 days during these pulses.  During the first phase of treatment, called induction, she was on 29 straight days of the steroid.  This was when she gained all of that weight and couldn't walk.  The steroid in itself kills off a lot of the leukemia cells.  The five days of it isn't bad, but she will start having cravings and a little attitude towards the end of it.
She also takes another chemo called 6mp every night.  This chemo must be taken on an completely empty stomach.  We are in a bad habit letting the kids eat a snack right before bed, so Alicia sets her  alarm for 2:00 in the morning, gets out of bed, and gives Briley her chemo. This has been going on for nearly a year!  We're use to it now!  I know there's easier ways to do it, but that's just how we (Alicia) does it!
Briley also takes an oral form of the methotrexate once/week, except for weeks that she's getting an LP.  
And there's one more routine med.  She takes Bactrim 3 days a week, twice a day.  It helps prevent her from getting a certain type of pneumonia that cancer patients are prone to.
Then there's the as needed meds.  2 types of nausea meds, pain meds, zantac (because of the steroids), laxative (because of the vincristine).  
I kinda got off of what I intentionally wanted to talk about (her latest procedure and the fishing trip), so I will update on that tomorrow.  My goal is to eventually print all of these blogs and save them for Briley when she gets older.  That way, if she ever wanted to look back and read what she's been through, we would have something to let her do such a thing.  
Even though she's in maintenance, she still takes a lot of meds.  I know that there will be an end one day and it can't get here fast enough.  Until then, we appreciate everyone's continued thoughts and prayers!  

Wednesday, July 11, 2012

Briley's Appointment

Just a quick update.  Briley's appointment/spinal tap/chemo went great today.  Her counts were good.  ANC - 1180!  It has leveled out again and we are happy with that.  Both her hemoglobin & platelets were great also!  
The spinal tap went good.  They no longer put her completely out. Instead, they use a mix of versed/fentyl for sedation.  She's pretty funny when the versed takes hold!  She never once complained about the needle in her back, other than she asked the doc what he was doing back there.  Miss Amy, the child life specialist, does a great job keeping her busy with games on the iPad when the procedure is being done.  
I guess no news is good news.  They take the spinal fluid out and look for leukemia cells.  They replace the same amount of fluid that is taken out with chemo.  Then she got another round of chemo through her port.  So far, so good.  We've kept her on nausea meds throughout the day.
We will wake up in the morning and head to Azle for the fishing tournament.  I'll will post more about that and the trip has a whole later on.  Right now, the kiddos need to get to sleep because 6:30 will come early for them!

Friday, July 6, 2012

Briley is back from camp. Six Flags

The 4 of us left out at 5:30 yesterday morning to Fort Worth for camp Sanguinity.  The camp is for kid's getting treatments at Cooks for cancer and other blood disorders.  The siblings also get to go, but Bryson is too young this year.  Alicia has had a lot of anxiety about letting Briley go and has worried and worried about it.  But in the end, Briley had a blast and that's what counts!
We dropped Briley off at Cook's and saw her off on the big bus!  She was so excited to ride a bus!
Bryson was sad because he couldn't ride the bus with Briley.  We decided to have a Bryson day.  Just to spoil him a little bit since Briley gets most of the attention and there are times that he feels left out.  So off to Six Flags we went!
Now, I almost turned around and left when we saw how much it cost just to park and get tickets.  Unreal.  But, we were there and he needed this time together and have fun.
We had no idea how he would react to the rides.  We tried out the log ride first.  He loved it!  So we went down it 2 more times.  Then the mini mine train a couple of times.  He was getting brave, so we went to the mine train.  That one started getting a little big for him and he didn't like it as much.  We ended the day on the boat that goes way up and splashes down.  Alicia didn't want to get wet, so him & I got the very front seat for the ride.  We splashed down, soaking wet, and he loved it!  He wanted to go back and do it again, but we were out of time (and exhausted).  We noticed a pattern.  If it involved floating on water in a boat, that was the ride for him!  That's my boy!  He's our 3 year old daredevil! 
We left Six Flags and Bryson was sound asleep before we got out of the parking lot!
We ran by Walgreens to pickup a chemo refill and then to Cooks to pickup Briley.  She came off the bus just a smiling and so were most of the other kids (that were awake)!  They all had a blast!  It was great sight to see!  These kids go through so much and it's cool that they get to share a fun time together and get to see each other at some place other than the clinic!  Briley said she loved swimming and the nature show!  She told us of a big snake that they had, but she didn't touch!  She love the lizard the most!  And she had a bag full of crafts they worked during the day.  Each kid was paired with an adult volunteer for the day. That made Alicia feel really good about letting her go, and she's glad that she did!  Hopefully Alicia will be able to volunteer next year, it would be right up her alley!  
Alicia and I are both sore and exhausted, but it was well worth it for both kids to have a great day!  We haven't been able to take a vacation for the past 2 years, but the rangers/six flags/camp/fishing trips are making up for that and it's nice that Cooks does these things for their kids.  
Our next trip to Cooks will be next Tuesday.  We will spend the night so we'll be there close for her 7:15 appointment on Wednesday.  It is the dreaded procedure day that comes around every 3 months. She will have the spinal tap with chemo injection.  Chemo through her port.  And start the 5 days of steroids.  Joy.
We will stay a second night and fish the kids tournament at Eagle Mountain Lake with the pros on Thursday!  I hope the side effects have passed from the previous day's procedure by then and we can all enjoy a day on the water!  
I think she only has 3 spinal taps left until she's done with treatment!  Awesome!  I'd like to thank the folks in Haskell for following along and sending cards.  Thanks!!

Monday, July 2, 2012

Rangers Game

The big day was upon us on Saturday!  Rangers game, here we come!  Mom and dad rode with us.  They met aunt Dewanna and uncle Gary at the hotel.  We got to the gate on time and went upstairs to the Diamond club.  We met up with the Sunshine Kids Foundation folks, got signed in, and they had tons of pizza to eat.

After eating, the Ranger's 2nd baseman, Ian Kinsler and his wife, Tess, visited with every family.  They had a bag full of goodies for the kids.  There were 21 cancer kids at the event.  

All of the kids gathered around the podium and took group pictures.

After the events from upstairs, Alicia, Bryson and I went to our seats while the Sunshine kids went downstairs to go out on the field.  A child life specialist took Briley down there.  Briley was excited to go, until.......

Captain, the ranger's mascot, walked up behind her and autographed her shirt!  She didn't want anything to do with anyone dressed up as a big horse and she especially didn't want that horse writing on her shirt!  So she cried the whole time on the field.  You can kinda see her on the right in the picture above.  She is being held by the child life gal.  

The group of kids on the big screen!

After the on field presentation, Briley was brought up to our seats. As soon  as she saw Alicia, she broke down crying, "mamma!!!! he wrote on my shirt!!!!"  We had a good laugh, and she calmed down and settled in and watched the game.

The Rangers beat the A's, 6-2!  We had a great time.  It was nice getting away as a family and having mom & dad go with us.  The following picture didn't turn out great, but it's a picture of a bald-headed cancer kid sitting in front of us watching the game.  This is what it's all about!

Briley is doing much better the past couple of days with her walking.  She is able to stand for a short time without holding on to anything.  She is walking more and more with her walker.  I think the swimming has done a lot of good.  She will be going to cancer camp on Thursday and we may take Bryson to six flags while she's away.  I know she will have a great time there!  Thanks!