November 13, 2012

Sitting here laying awake with a mind that is racing and a bit overwhelmed by everything.  I must say I am tired.  I truly feel that I have aged 20 years in the last year and half.  I ask myself why us???  But as my friend Missy whose son is fighting too says; "Why not us".

Kassidy is practically done with half of her senior year already.  She continues to receive emails and letters from softball coaches which breaks my heart, but my daughter will not be pursuing her goal of playing college softball this next year.   I am so sad she's had to give up so much in the last year.   Cancer has done that!  I hate you Cancer! So not fair! But Kassidy accepts all her circumstances so much better than we do, but again she is WAY stronger than we are.

Fortunately, Kass has gotten a chance to do some pretty cool things in the last couple of months.  In September, she was invited by the Pediatric Brain Tumor Association Ride for Kids to ride as one of the star kids.  This ride is done every year to raise money for research and scholarships for kids fighting brain tumors.  A couple hundred riders showed up to support the ride and they rode down the 215 which was shut down just for them all the way to Town Square Mall.  Kass had a great time!

Kass got to check off her bucket list: Riding in a Side Car!

Ready to go!

It was all worth that smile!

Each kid was interviewed after the Ride!

The beginning October was Kassidy's fundraiser, Ride for Life, this was a motorcycle Poker Run that was held by the Nevada Childhood Cancer to raise money for Kass and for NCCF.    Ryan and Kassidy attended while I visited and watched Kyle run in Boise that weekend.  To my surprise she felt fabulous that day which was great to hear since she had been throwing up days before off and on most likely from brain swelling.  We had been administering a dose of IV decadron only when she absolutely needs it which seems to be working.  She refuses to take it every day.

First Stop for the Poker Run!

THANK YOU TO ALL THE VOLUNTEERS & PARTICIPANTS!!!!

Kass with a look a like Kiss guy at the fundraiser.

A while ago I reached out to Friends of Jaclyn Foundation, this foundation pairs up children fighting brain tumors with athletic teams to give the child support and friendship.   Sports are right up Kassidy's alley! Well, the UNLV Rebels Women's Basketball team decided they would adopt Kassidy as part of their team this season through this program. We were invited to go watch them practice, meet the players and coaches and had a tour of the new facilities at Mendenhall.  Not only that, but Kass got to go back for the Season Opener Game to sit courtside and watch them play an amazing game against UCSB Athletics.  Right after their win and huddle cheer each girl came and gave Kass a hug.  What a great group of young ladies.  She throughly enjoyed it and can't wait to be back!  Especially since next year she's probably gonna be a UNLV Rebel herself.

Kass & the Rebels Women's Basketball Team! Go Rebels!!!

This year again, Kass got to go to homecoming.  I was elated since that would mean I would have to play dressup with my non-dress wearing daughter.  Shopping for a dress was definitely not fun for her, it never has been, but this year it was really hard for her.  After attempting to try on dresses at two places in the mall I decided to x the whole expedition.  It was not worth making Kass sad.  So we came home and I took her measurements and we ordered a dress online to measure.  Best thing I could have done, the dress arrived a week before the dance and it fit perfectly.  She even wore the dress without wearing basketball pants under them.  LOL! She looked beautiful and had such a fun time with her friends.  Our friend Amy Lynn took some beautiful pictures that day!

The Girls!

Kass & TJ being silly.

Our pretty girl

Too cute!

NCCF also had their Danny Gans Memorial Champions Run For Life Run and Walk in October.  We went to support them and walked the one mile walk with Kass.  We like to support these amazing organizations whenever possible, they all have been so supportive to us.  After the run and walk they have the Champions Run for Life, they pick certain amount of children who have been battling life threatening diseases and they are introduced individually and each of them get to pick who they want to run their victory lap with.  Donny Osmond is now hosting this event and he runs or walk around with each kid.  Kassidy also picked us, Dr. Bernstein, and Sprinkles, the Dunkin Donut character since the Meadow Gold cow deflated.  Hahaha

Kass getting interviewd and asked who she wants to walk to do her champion walk with.

She didn't even know who Donny Osmond was!!! OH MY GOSH!

Kass with her medal.

Our Halloween was not the same this year without Kyle again.  We did do our annual pumpkin carving with Kassidy's friend Bailie and Kyle's girlfriend Kaela.  I had already bought pumpkins for everyone, but Kass decided hers was too big and bought herself a mini one.  She thinks they smell so this way she wouldn't have to suffer too long.  Dramatic, I tell ya!  Also, she decided she didn't want to go trick o treating.  Booo! Ryan and I were sad that we wouldn't be able to pick through her candy while she was asleep as we always did before.  So we filled bags for the run that night, not so eventful.

Really Kass, that small!!!

Carving Time

Her "Never Give Up" Pumpkin

The kids did a great job!

The next day was an exciting one, we left for LA for the Ellen Show.  It was a quick trip there and back, but all worthwhile.  Kassidy has been wanting to go to the show for years, but last time I got tickets she was not old enough to go.  She was actually kind a cranky the morning of, but when we got there her whole attitude changed.  Her and Bailey were so excited they were giddy.  It was fun to watch!  If you ever been to the Ellen Show you know that it is a good time.  From beginning to end they have you laughing, dancing, hugging your neighbor....

Here is a clip of us in the audience go to the FACEBOOK PHOTO segment she does:
http://www.ellentv.com/episodes/julie-bowen-tsung-tsung-lee-and-twilight-week/

Waiting for our number to be called!

Ready for the show to start! I snuck a pic.

After the show had to the Original Bob's Big Boy Restaurant for a shake.

On Friday, I had a great surprise for Ryan and Kassidy.  A friend had a buddy pass through Southwest that was ready to expire so she gave it to me and she helped me use it to bring Kyle home for the weekend so he could come surprise them and run the 2nd Annual Kassidy's Army Run.  The expression on Ryan and Kassidy's face when they saw Kyle was priceless!!!  Kass was so excited she posted it on facebook so quick that we couldn't surprise his girlfriend as she was on her way to the house to help us with stuff for the run.  It was awesome to have my family together!

Both excited to see each other!

The next morning it was run day!  This year Ryan and I were definitely not as nervous as we were last year.  Everything seemed to have fallen into place and we knew what to expect.  We had almost 200 walkers and runners a bit less than last year, but still a great turnout.  I got emotional again thanking everyone that came out to help and support.  I can't tell ya what an overwhelming feeling it is to see so many there for Kassidy.  WE ARE SO THANKFUL FOR EACH ONE OF YOU!  I really love putting this event together, it's a lot of work, but so great to see everyone, I guess maybe cause it's a family event, all ages can participate even pets. :) We had the Centennial ROTC present the colors, Bridgette who sang the national anthem beautifully, Centennial Polynesian Club open with a dance and had Kyle, Nick, & Thomas do the stretches for the crowd.  After the run and walk we had food for everyone, great raffle prizes and some amazing auction baskets.  All in all we were all proud of the success of the event.  We could have not done it without Hope 4 Lives, the non profit that helps us with all our events.  We are so thankful for Abel for all he's done for us helping us raise all the money we have raised so far.  We are blessed!

For those who were Timed Runners, here is a link for your results:
http://results.bazumedia.com/event/results/event/event-2224

More PICS SOON!

November 3, 2012 at Bunker Park

2nd Annual Kassidy's Army 5k run & 1 mile Family Walk

Kass with Sam and Nicole, our old neighbors.

Centennial ROTC

Centennial Polynesian Club

Nick, Kyle & Thomas doing the stretches

Well, all in all Kass has been doing fairly well. When she absolutely feels poorly she lets me give her decadron which is not very often.  After the weekend of the run, she scared Ryan and I because she said she was having a hard time breathing and kept choking constantly on her saliva.  This is scary because the saliva can cause aspiration pneumonia and just not being able to breathe is terrifying for anyone.  Unfortunately, this is a problem with brain stem tumors, the ability to breath, swallow etc is all controlled by the dang brain stem.

I called her oncologist that morning and he fit us in right at 9am.  Sigh!  He proceeded to say that her throat showed no signs of infection or a cold and that most likely was brain swelling and that was puting pressure on her brain stem.  Also, I asked him how we would know if her ability to swallow is slowing down,  and he we would have to do a swallow test which we hope to do in two weeks. He also said we would need an MRI sooner than later to make sure there was no tumor growth and everything is ok.  He knows how Kass hates steroids so he had me give her 2mg of decadron in pill form  for 3 days and see if that helped with the choking and throat.  Well it did, by the next day she said she seemed to breath better.  What a relief!! In my mind I was thinking this damn tumor better not be growing!

I've also been speaking with the other parents of brain stem gangliogliomas and there has been a couple studies where they have found a correlation with ganglioglioma tumors and the mutation of the BRAF V600e which is the same mutation that causes melanoma cancers.  A couple have sent their pathology slides of their children's tumor and they have all come back positive for this gene mutation.  I started researching online and saw that there was a study of this done in Germany at the University of Heidelberg so I first called, but couldn't understand what they were saying.  Duh! So I emailed and I got a response back that they are gonna start a trial with a drug called Vemurafenib, but the trial is yet not opened and it's only for adults.  Also, there is a trial here in the US that should be opening up using the drug Selumetinib, aka AZD6355 for pediatric patients.  It will be very interesting to see if Kassidy's tumor has this mutation and if does what these drugs will bring about in the future.  It's a step in the right direction to a cure, but since gangliogliomas are not a priority in the brain tumor world I hope the funding continues to these trials.  When I spoke to Dr. Bernstein he said he would get on board on maybe next clinical trial that he is up to date with the results.  So it's definitely something to watch for.

Yesterday was our dreaded MRI.  It was veteran's day so Ryan was off.  We both went to Steinberg to take Kass, she did pretty good.  Not feeling well as always, but this time we gave her Phenerghan for the nausea which makes her sleepy and I snuck some dccadron in her IV early in the morning to reduce swelling.  SHHHH!! She did not throw up this time!  YES! The cd has been overnighted so now we wait for results.  We will keep you all posted.  Thank you all for your prayers and good thoughts!  Always, always a hard time for us.  I almost feel that every MRI gets harder and harder. Like my friend Catherine a 3 time cancer survivor says, " I guess it's just because the way we live our life depends from the results.  Everything depends on what the results are." So true!