July 21, 2012

It's been so long since I've updated the blog.  We have just been enjoying our summer to the fullest and pretending to be a "normal" family; it's felt so good!!!! :)  But I know many of you have been wondering how things are going, since we've been getting emails, texts and even messages wondering how Kass is doing.  But we have to tell you it's been pretty great.  Kassidy has been doing very well!  She finished her junior year of high school with pretty good grades.  We are so proud of our new senior!

The middle of June we finally hit 330ml on Bag 1 from 500ml; which was the dose Dr. B wanted us in May when we went to Houston, but couldn't achieve because her body couldn't handle the drastic drop of dose. After, Kass was out of school it was easier to wean her faster since at home she could handle her nausea a bit better as we lowered the dose.  She just wanted to be at the desired dose as soon as possible so she could let her body adjust to the new dose.  Not only that, but Ryan and I were delighted with the fact that this meant that there would only be two bag changes during the day instead of three.  A bit of relief in our schedule! Sigh! We welcomed this small break of freedom for us and for Kass.  She now is only on an 1 hour, 30 minutes of treatment every four hours versus the 2 hours 10 minutes every four hours that she had before.   She's loving the 2 hour 30 minutes of freedom she can use to either shower or just plain be unhooked from her pump.

The best part was that a couple days after she reached the lower dose of ANP we were able to completely take Kass off decadron.  Yipee!!!!  This was such a great accomplishment!!!  We hope she never has to go on that drug again.  We understand it's importance, but sure glad she's off.  Dr. B did tell her that it will take a couple months for it to be completely be out of her system, but we can already see the difference especially in that her cheeks are less puffy and she's already been able to start losing some of the weight she gained because of it.  We know it's gonna be a slow process, we just hope she doesn't get too discouraged with the long process.  Just hard to explain to a teenager that it will take time for changes.

Kass has gotten to do some pretty awesome things this summer.  On June 15, she got the opportunity to throw the first pitch at the Las Vegas 51's game.  What a great honor!  We all had so much fun that night watching her throw the pitch, we got to eat dinner at the club house restaurant and watch the game from front row club house air conditioned table and finished the evening with amazing fireworks.      All thanks to our friend Larry Brown who set it all up for Kass.  Thanks Larry!

Kass in action!

Our family!

Cosmo giving Kass a high five after her pitch!

Kass, Cosmo & Alex

Jeff & Sue came to watch the game with us

Kass & Ash

Dinner at the Club Restaurant

The fireworks!

The end of June, Ron Pope, one of Kassidy's favorite singers (he sings "A Drop in the Ocean", one of Kassidy's favorite songs on the blog) invited Kass to go to his concert in Phoenix, Arizona.  So Kass, her friend Alex and I made a road trip.  He listed us as his guests and we had enjoyable evening listening to his concert.  Afterwards we were asked to hang around so Ron could meet Kass.  He came over, gave us a hug and pulled up a chair and just chatted with us for about a half an hour.  He made Kass feel like a million bucks!  It was so great for him to take time out of his busy schedule for Kass, we truly appreciate him for that.  Please check out his music, he's so very talented:


http://www.RonPopeMusic.com

Ron Pope

Ron & Kass

On July 1, we celebrated Kass being on ANP treatment for a year.  Oh what a year it has been!  She wanted to celebrate going out to eat at her favorite place, Cheesecake Factory.  What a difference from last year's emotions.  Last year her day started off really early with surgery for the placement of her first catheter port and from there straight to the clinic for her first infusion treatment and learning how to administer emergency decadron in case of bad reaction.  We were so overwhelmed that day!  I still remember feeling we had like we were going to have a heart attack from all the excitement and what the nurses were asking us to do.  I remember thinking I don't think we will ever be able to properly prepare the medication bags, program pump, draw blood, clean the port, flush her line, change the catheter tip........ That year anniversary day we reminisced on how far we all have come and that we made the right decision for Kassidy.

July 11th was a really hard day for Ryan and I.  We sent Kassidy off to Camp Firefly, a camp for children affected by cancer put on by a wonderful organization called Candlelighters here in Las Vegas that's held at Torino Ranch about an hour out of Vegas. This was the first time since May 19, 2011 that either one had left Kassidy's side for more than just a couple hours.  Two nurses from camp came a week before to learn how to prepare Kassidy's medications.  I proceeded to brief them on everything I had learned in 4 weeks at the clinic in a matter of 3 hours.  Ahhhhh!!!  I also sent them with the videos I had taped while at the clinic showing the different steps of the process.  They assured me that if they needed help they would call us.

Kassidy was not allowed to take a cell, we would not have contact with her unless there was an emergency.  As Ryan and I dropped her off I could not help, but feel like I was leaving her for the first time in her life.  I couldn't help, but feel anxious and after I said goodbye couldn't help but cry on the way back home.  The nurse who I handed the HUGE  bag of medicine (the bag was so big that we even had comments from other parents leaving their kids meds) reassured that he would call me when they got to camp with the number to the med shed. He did, thank you nurse Stinky!

Kass & Tori leaving for Camp Firefly!

Huggin her tight before she leaves

Kass and her daddy!

When we picked Kass up from camp on our way to Newport Beach, she excitedly told us all about the amazing time she had at camp.  We were so glad!  The heat affected her a bit while at camp so she did spend a little time in the med shed, but she got to enjoy most of camp which is the important part.  Her friend Tori, who battled thyroid cancer last year and is a veteran at camp accompanied Kassidy the whole time.  Thank you Tori!  Kass told us stories about the crafts she made, the pranks they pulled on the boys cabin and boys throwing 100 crickets in their cabin, water fights, Cirque du Soleil actors putting on a show and so much more..... So thankful that she could have such a fun experience!!!  She can't wait to go again next year.

Kass aka Panama (camp name) with her Cabin #11 sisters and leaders!

And today we got home from a small vacation.  The beach was wonderful for all of us.  The weather was so nice that Kass got to spend most of the time outdoors.  She didn't even need one bag of hydration while we were there and even her nausea was very seldom.  She couldn't get in the water because of her broviach, but that didn't seem to stop her from enjoying the beach.  On Tuesday, for my birthday we all decided to get family tattoos.  We all got grey cancer ribbons to show our support for our brain cancer survivor and Kass got one with survivor on it.  Wish we didn't have to come back to real life.

Even a backpack full of medicine was not stopping her from enjoying the beach!

Fun times!

Lunch in Venice

Kass getting ready for her Segway Tour

Family Ink

Close up of Kass's tatoo

On Monday, July 30th Kass has her MRI and just the thought of it gives me PMS (Pre MRI Stress).  We hope and pray this MRI shows stable or reduction of the tumor so we can continue to wean of ANP.  We know that she can live with the remaining necrotic tumor that remains, but if the body decides to absorb it or reduce it that would be great so we know for sure that it won't cause side effects even after she's done with ANP.  So again, we place our faith in God and ANP and pray for the best.

Check out our facebook Kassidy's Army page for more constant updates:

http://www.facebook.com/pages/Kassidys-Army/271375682902038