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!  

Monday, October 15, 2012

The steroid regiment is over with!  Briley is back to her normal self.  Her hungry is back to normal.  She's not having any pain.  So, life is back to as normal as it can get.  Thankfully it will be another 3 months until she has to take steroids again. 
We've all had kids taking predisone at one point or another due to sickness.  Take the predisone side effects and multiply it by 10 and that's what it's like taking high dose dexamethasone.  And then add all of the chemo on top of it.  
The reason I say that is, a couple of people got a little frustrated or a little "pushy" with Briley while she was on the steroids and they would say, "oh, my kid has had steroids before when he/she was sick one time so we know what it's like".  Maybe so, but you really don't have a clue what she is going through.  Steroids + chemo + fractures - come on folks.  People soon forget that she is still undergoing treatment for cancer. Something that I hope no one else will have to deal with.
Ok, that's the end of my little rant.  Everything else is going well.  Alicia and Briley are doing good at the school.  We are thankful Alicia was able to be Briley's teacher this year!!!  Bryson is loving daycare!  My school is going well, just ready to be done with it!  We've got some rain!!!!!  That's always a good thing! Thank you for keeping up with us! 

Sunday, October 7, 2012

Sunday night update

Brileys' left knee is really hurting her.  It's not constant, but if she bends it a certain way or if we hit a bump driving down the rode, she will almost cry in pain.  So I don't know if it's the chemo, the steroids, the rods, the weather change, or if it's something totally new.  It kinda sounds like strained ligaments.  I don't know.
Anyway, the steroids are working their magic.  We had frito pies for supper as requested by Briley!  

Saturday, October 6, 2012

A quick update

Usually Briley does fine after her procedure days.  However, this time as been different.  Granted, this has been the first time that she's had a procedure and went to school the next day.  The doctor assured us that it would be fine for her to go to school the following day, but that's proven to be a mistake.  
She done way to much on friday at school.  Alicia called and asked that I bring some pain meds.  Her back and her legs were hurting.  Her back was hurting probably because of the LP & the bandage.  Her legs were hurting from a combination of the fractures, steroids, and the vincristine side effects.  She didn't feel good at all when she got home and she basically laid on the couch all afternoon.  Today (Saturday) has been a tad better.  She still hurt some and had to have pain meds.  This if the first pain meds that she's had since she first started walking after the wreck.  She's never had to have them in the past after a LP.  So, it's been a lesson learned.  Her next LP will be in January.  I don't think she'll be going to school the day after!
Hopefully she's feel much better tomorrow as the chemo leaves her system. Tuesday morning will be her last day of steroids.  The side effects have already started.  Her appetite is increasing by the day! And the roids could be a reason why she is having some bone pain.  It will take 2-3 days for the roids to get out of her system after she stops taking it, so we are looking forward to friday!  It's going to be a rough one between now and then, especially when the roid rages kick in.  Good thing she has her momma as her teacher!!! And I hope everyone else at the school is understanding that she may have uncontrollable outburst at times.  Ugh, I hate cancer.
We appreciate everyone keeping up with us and we thank God for her healing!

Friday, October 5, 2012

One more down, one to go!

That's right, one more spinal tap down and one to go (if my math is right).  Alicia will get me in trouble if she reads this post.  She does not like to look ahead.  She is very grateful for how well things are going now and knows that things could instantly change.  I on the other hand am counting down the days until the end of treatment.  The nurses won't tell us when that will be, but according to the treatment plan, it should be March 30th.  Since she has the LP's once every 3 months, then her last procedure would be in January!  I can't help but to look ahead to when this nightmare will be over with, but at the same time I also know that things could very easily change.  I also know that she still has two surgeries ahead of her.  One for taking the rods out of her legs and another for taking the port out.  But dang it, it's been a long road and I can't help but think of the day when we give her the last dose of chemo!
We got to the hotel around 9:00 last night.  I've said this before, but there's something about staying in a hotel that causes kids to go bonkers!  They finally feel to sleep around midnight and we were up at 6:30 to make a 15 minute drive to Cooks.  We were about 15 minutes late!
Briley got her port accessed with some fussing.  The worse thing about having the port accessed for any length of time is the bandage!  It hurts coming off!  Anyway, blood was drawn for a CBC and Zofran was infused in anticipation of nausea from the chemo she would eventually have.  Her CBC looked good, although her ANC is still too high at 1850.  Her ANC needs to be between 1000-1500.  Platelets & hemoglobin were great!  The doctor didn't want to increase her nightly chemo as we thought since her genetics shows her to be extremely sensitive to the nightly chemo (6mp).  So the chemo (methotrexate) that she takes once/week was increased.  She also started a 5 day run of steroids (dexamethasone) tonight.  They also increased the steroid dosage because of her growth.  We will start noticing her appetite increase in a couple of days along with a little bit of an attitude.  Got to love the roids!
She finally went back to the procedure room.  First she had chemo (vincristine) infused through her port.  This chemo will give her  nausea and make her feel bad.  It also affects her feet by giving her a tingling feeling.  She's had a lot of vincristine throughout her treatment, especially before the start of maintenance.  Even before the wreck, she could not run normally.  We believe it's because the vincristine side effects. 
The spinal tap (LP) was next.  We tried a new sedation (Nitrous) today so that she could drink some before the procedure.  She got to decorate the mask she would be wearing before hand!  And then she got to pick a "flavor" to breath while she had the mask on.  She choose root beer of all things!  The laughing gas worked great and I'm so glad we tried it.  I think it knocked her respiratory down further than it should have at one point, but it was quickly corrected.  The one thing about Nitrous, the effects of it doesn't take long to wear off!  Anyway, about 10ml of spinal fluid was taken out and 10ml of methotrexate of injected in.  They will view the spinal fluid to make sure that no leukemia cells are present.  In this case, no news is GREAT news!
After the spinal tap, she woke up and is required to lay flat for 30 minutes so the the chemo can work it's way up the spinal column and around the brain.  Bryson kept the nurses on their toes, running around and playing.  He doesn't quite understand what is going on with big sister, but he has a good time no matter where he goes!
We left out of Cooks about 11:00 and started home.  Briley didn't want to eat lunch at first, but then she decided that she wanted to go to CiCi's pizza.  So we gave her more nausea meds before we went in and had a good lunch.  Yes, we've learned by trial & error. Always carry nausea meds and always have a puke bag handy.  Lucky, we haven't used the bag in a while!
We left out of CiCi's and the kids slept the entire way home.  
Briley has not been feeling her best tonight.  She's usually up and playing, but she just wanted to lay on the couch and watch tv.  Her back started hurting at the LP site, so we gave her lortab.  She also has a big bandage on her back that must remain on there for 24 hours.  This is the only time that she gets out of taking a bath!
There was more than normal amount of blood on her bandage, so Alicia called the doc that did the procedure and doc said that everything was fine.  It was normal to see some blood.  We've never seen that much so it had us worried a little.  
I can't say enough about Cooks, especially the oncology doctors and nurses.  I hope it's the same at all children's hospitals, but we really feel that they go out of their way for our kids.  The oncology folks see a lot of kids, but we really feel like we are one big family up there.  Briley's doctor was not in the clinic today, but she came over from the floor just to see Briley & Alicia.  She gives Alicia a hug every time she sees her.  Also, nurse Claudia and child life Kate stopped in to see Briley, although they were not assigned to her today.  And child-life Ms. Amy.  What would we do without her!  She is a God-send to that place!  The Cooks oncology floor is just different from anywhere else you go.  You are not treated like just another patient.  We've been to other children's clinics that run kids through like cattle at an auction.  I just can't say enough about the 5th floor at Cooks!
Just a little update on Kelly Livingston.  If your read my last post, Kelly had acute liver failure for unknown reasons.  She is a wife, a young mother of two, and a 3rd grade teacher here in Seymour.  She had a successful liver transplant yesterday and still has a long road ahead of her.  There's a lot of swelling going on so they have not closed her up as of yet.  She should come off of the ventilator tomorrow.  Please keep Kelly and her family in your prayers.  Thank You!

Tuesday, October 2, 2012

Oct. 2nd Update

It's October and things have settled down and things are routine now.  We love routine!   Briley wakes each morning ready to go to school.  She loves school!  Bryson also, although it's hard to get him out of bed in the mornings!  My schooling is going good, can't complain.  I'm gone 3 nights out of the week, so by the time I get home, the kids are already in bed.  I miss seeing them and it's been a little tough on Alicia getting both of them ready for bed by herself.  We'll get through it and it will be worth it in the end!
I'm at home with Bryson today.  He is sick.  He has puss pockets on his tonsils, but he's tested negative for strep.  Just a viral thing that's got to run it's course.  
Briley has her every third month procedure scheduled for this Thursday, 10/4.  She will get a LP (spinal tap), chemo infusion through her port, blood work, and start 5 days of dexamethasone (steroids). It's scheduled first thing in the morning, so we always stay in Fort Worth the night before.  Unfortunately, Bryson will not be able to make the trip this time since he has been running a fever.  Kids that are sick are basically banned from the oncology floor, which is a good thing.  If they are oncology patients with fever, then they will be put into isolation.  Anyway, I will have to keep Bryson home with me while Alicia & Briley go to Fort Worth.  I'm a little nervous sending the girls down there by themselves to spend the night.
A couple of people have ask me recently about the LP's and the purpose of them.  I'll do my best to explain.   Leukemia cells love to hide in the spinal fluid.  Although NO leukemia cells have ever been seen in her spinal fluid, that doesn't mean that they were not there.  It's just impossible to look at every last drop of spinal fluid, as it is impossible to look at every last drop of bone marrow.  Anyway, the nurses will conscious sedate her and the doc will insert a big needle inside a space in her spinal cord.  The spinal fluid leaks out of the needle and into a tube.  I believe they take out about 10cc's of fluid.  The fluid is then replaced with the same amount of chemo.  The chemo will then work itself up the spinal column into the fluid around the brain and hopefully kill any leukemia that it encounters along the way.  
Briley does great during the procedure.  She has been sedated with versed/fentanyl.  This time we are going to try Nitrous Oxide (laughing gas).  The reason for this is that it should work the same as the other, but she will be able to eat/drink before the procedure.  
During the procedure, the child life gals keep her entertained playing games on the iPad.  Thanks to the meds, she doesn't remember anything about the procedure.  She does feel some pain during the insertion of the needle, but it's mostly just mild discomfort the rest of the time.  
We appreciate it if you say an extra prayer for Briley and Alicia for safe travel and that the procedure will go according to plan.  Also say a prayer for Kelly Livingston as she is in acute liver failure for unknown reasons.  She's in ICU at a Dallas hospital right now as the doctors are trying to figure out what is going on.  
Thank you for taking the time to read the updates!  I will do another update after the procedure.