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!

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Thank you for your thoughts & prayers for Briley! God Bless!