December 13, 2012

Another sleepless night for me....  I don't like it because it makes my mind wander to places I don't want to go, things I don't have answers to nor want to deal with.  But it's what a mother does, Worry!  So I'm up putting my thoughts in writing to update you all.

I first want to start by telling you that Australia was AMAZING!!!!!!

Yes, yes I worried myself sick before the trip, but the actual day of our trip I put my trust in God.  I pleaded with him to let Kass rest and not be sick the whole trip.  That she could recover from the long ride and be able to enjoy her vacation.  He listened!  Sigh! We could have not been more thankful to him for the gift.

Kass decided the night before she did not want to be on treatment while in the air.  She did not want to deal with pump issues, pack the backpack around, have to go to the bathroom every couple of minutes since she drinks so much water while she's being infused because of the high sodium content of the medicine and she also did not want us to deal with IV bag changes on the airplane.  Ryan and I timed her doses so she would end one of her doses right before we left for Vegas to LAX and it would resume during our layover there and end again right before lift off from LAX to Sydney.  About 2 hours into the flight she took a full dose of phenergan.   We were lucky to have an empty seat between us so she stretched out and slept and slept and slept.  She slept for pretty much 11 hours straight.  What a relief!

When we got to Sydney after our crazy 14 hours flight.  Wow, what a long flight!  Ryan prepared her medicine and got her back on treatment before we even went thru customs.  She was back on track!  We picked up our rental and commenced our adventure!  Mind you, driving on the wrong side with a car with a steering wheel on the passenger side.  Wooooo that was scary for all of us, but fun.  LOL

We checked into our condo hotel and went out to explore Darling Harbour that was just walking distance away.  After, a great meal we actually went back to the hotel and let Kassidy rest for the remainder of the day.  I brought hydration IV bags with me and in between treatment got her hydrated and she slept and slept and slept till the next day.

We woke up to a welcome call from a representative from Make A Wish Australia.  She was darling in her cute Australian accent and she pleasantly went over the itinerary with us and asked us to call her if we needed anything. She first helped us getting us to the right spot to go get Kassidy's blood taken to the routine blood test we have to do every week.  She found a children's hospital that bent over backwards to run the test for us and did not even charge us.  What a great start to our trip!

During the rest of the time we traveled and saw beautiful places.  Sydney is a gorgeous thriving city and very clean.  The people were so polite and helpful.

Here is the link to the youtube video that I made up of most all of the pictures we took of the trip, it tells the story of everything we did.

Check it out!

http://youtu.be/Um7e3gNNYMg

I think my favorite part of the trip was when Kass got to pet all the animals at the Wildlife Park especially the Joey(baby kangaroo).  I can't tell you how emotional it was for me to watch her interact with all the animals.  We were there with a big tour group and all the animals would either come right up to Kass and no one else.   Not only that, but they would sit still and let her pet them.  It was almost like they knew......

One of the zoo keepers brought the little Joey wrapped in a pack that simulated the momma's pouch, he was so excited and fidgety in the zoo keeper's arms and when she handed her to Kass this cute baby kangaroo settled into Kassidy's arms like he was home.  Not only that, but looked at her so lovingly I was in love.

I am so thankful to the Make A Wish Foundation for such a precious gift.  The trip was fabulous and being able to share Kassidy's wish with the whole family was a true blessing.  It renewed us as a family and we made some great memories we will never forget.  We will forever be grateful to the organization and especially our wish granters; Justin & Barbara, they volunteer their own time to do this for children all over Las Vegas.  How great is that!

We would like to keep giving back to Make A Wish and help other children with their wishes.   That's why again this year we have registered a Kassidy's Army team for the 12th Annual Run for a Wish and Walk.  PLEASE come run or walk with us and show your support for these children!!!!!!!!  Also let Make A Wish of Southern Nevada know that Kassidy's Army supports their program 100%.  It is only $20 for the run and $15 for the walk.

COME Join our Team!
http://runforawish.kintera.org/faf/search/searchTeamPart.asp?ievent=1042867&lis=1&kntae1042867=BFC30C5429644106BDFF8DE8C50E2130&supId=0&team=5347512&cj=Y

When we got home on Sunday morning after our trip Kass pretty much came home, ate and was in bed again.  She wanted to get rest so she could go to school the next day since it was her first bowling match and not let her team down. Right before we left for Australia she had found out that she had made captain of the Centennial Girls Varsity Bowling Team, so proud of her.  She takes leadership and especially her practices and games pretty seriously.  She does not like to miss especially when others are relying on her.  I admire that about her.

She had two matches back to back that week and by Tuesday evening she was exhausted and in pain.  Her legs were so swollen and painful that she could not walk.  She also developed red looking bruisea like nodules around her legs, Ryan and I were so scared especially since elevating them that night and advil did not help by the next day.  I was advised by the nurse at the Burzynski Clinic to take Kass for a Doppler Ultrasound to make sure she had not developed blood clots from the long airplane ride.  We were panicked, blood clots are not good and blood thiners are not great for brain tumor patients.  We took her to Steinberg and got results right away that her legs were clear, that week we kept her home 2 days from school to let the swelling of her legs subside and just let her rest.  Thank you God for a clear ultrasound!

I truly think she tried to do too much too soon after our trip.  I know we were exhausted still, but she is one strong headed stubborn girl and when she gets something in her mind, she's full speed ahead.  I do think sometimes it's the only way she learns her limitations.

This week she gaves us another scare.  She woke up from her morning nap feeling really shaky, a bit disoriented and would not walk straight.  I immediately called my neighbor to ask for help working our new glucose meter since they have a child that has type 1 diabetes.  He came over and helped me work the small apparatus and her blood glucose was at a 37!!!!!!!  My gosh, almost at coma level!  He was wondering how Kass was even standing.  I learned at that time what to give her to eat and drink to raise it quick.  This has happened once before, but the glucose level was not that low.  The doctor is not quite sure why this happened, we will just have to keep a closer eye on this issue to make sure it does not worsen.  It could just be a fluke! I hope.

We have also been talking about Kassidy's ANP treatment.  Kassidy at this time feels she needs a break.  So when she has her next MRI in the end of January and if the results are stable she would like to start weaning herself off her treatment again.  Ryan and I understand her concerns and don't blame her.  I cringe every time I have to clean her port and she winces because I am putting alcohol on an open wound every time.  I can't imagine the pain she feels every time I do that. I know that her body is tired and she would love to get a nights sleep without getting up every hour to go to the bathroom.  I know she hates the fact that the 80 pounds she has gained because of the steroids has taken a toll on her body and image as a teenager. It's been a long year and half for her.

I know that we made the right decision taking Kass to Dr. Burzynski, we would not change that for the world.  ANP treatment reduced Kassidy's tumor by 20% at the beginning, but her tumor has not reduced more in a little bit over a year.  We have learned that just because any specified cancer treatment is used  for a certain type of cancer it works different on everyone.  Everyone is different, our genes our different, therefore everyone's cancer is unique.  We are hoping to discuss options with Dr. B soon and see what's in store for Kassidy's treatment future.  Right now, we'd like to focus on today and at the end of January when decisions will need to be made I ask that you remember us in prayer.  I hope that God continues to guide us on what the next step is for our Kass.  I know I worry everyday, but the ultimate will is God's.  He has shows us the way thus far and I trust that he will show us the way then.  Meanwhile, we help Kassidy in her fight!

NEVER GIVE UP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

MERRY CHRISTMAS & HAPPY NEW YEAR
FROM OUR FAMILY TO YOURS

I hope all you have a wonderful Holiday Season.  Make it about what is truly important, family.

November 14, 2012

We finally have MRI results today, Wednesday, after a crazy Tuesday, brain tumor is stable! No enhancement and no change in tumor size.  Thank you Heavenly Father!

On Monday after the MRI we sent the cd via Fedex to the Burzynski Clinic, as we always do.  That next morning I got an email from our doctor explaining that the cd was missing the spine MRI, that all that was on the cd was the brain MRI with and without contrast.  Unfortunately, some of Kassidy's tumor is in the upper part of the cervical spine and by just looking at the brain MRI it would be unfair to give a complete reading; therefore deemed the test incomplete.  I freaked out!  All I could think of was they missed doing the test!  She has to do it again! NO!!!!!  My stomach notted up and I wanted to throw up.

I immediately called Steinberg to make sure the test was done.  It was!  Big whewwww! I then got annoyed because after Kassidy's scan on Monday we were asked to go up front to request a cd to be made for our copy where we usually just get it from our radiologist right after in 10 minutes.  We sat and waited for 35 minutes with Kass feeling terrible.  All she wanted to do was go home.  Ryan finally got up to ask why it was taking so long and they had forgotten about us.  Oh my gosh! In our desperation in getting out the place not only because of the cd fiasco but because it was the exact same location where Kassidy's tumor was first found on May 2011 (bad memories)  we did not examine the cd to make sure all the scans were on it.  We assumed that they just would be on it.  Ugh!  Another learning experience for the future.....

After confirming that Kass had had the MRI of the spine after all,  I asked the lady if there was a way an out of town doctor could view the scans thru an online website or program.  She said YES!!!  Halleluyah!  Why didn't I know about this before!  I immediately went into action with the help of a friend that works at Steinberg to help me get the clinic setup with the program, login, password, but of course it was almost closing time in Texas.  Dr. A also meanwhile requested cds to be overnighted with the correct scans on it just in case the IT department and the clinic couldn't get all the problems figured out with the program.

It ended being this morning before everything was finalized, but low and behold the radiologist at the clinic in Houston was able to pull all the scans up.  Success!!!  Glad that's over, it will pave the road for future scans to be read almost real time.  Great news!

Lala always knows when Kass needs loving.

Funny how God works, in what I thought was disaster at that moment there was something better in store for us.  Thanks again Heavenly Father for showing me that things happen for reasons, sometimes circumstances that we might not understand at the time, are to teach me patience and that things will workout on your own terms.  I'm humbled!  And thankful for friends that stepped up to help.  We are truly blessed that way.

Thank you to all for keeping Kass in your prayers, I know I say this almost everytime, but I truly am thankful and I think if we keep knocking on God's door maybe he will hear us.  I want him to heal our Kassidy, I want my daughter whole again!

Monday, Dr. Burzynski will be reviewing Kassidy's scans to give his opinion to see if we continue on the same dose or increase.  We are also wondering how long he thinks Kass will be on ANP if she keeps getting a stable scan.  Does having stable scans since last October mean she has stop responding to treatment?  Praying for guidance!!!

Tonight we ended the night with a fabulous dinner at Cheesecake Factory.  Kassidy's Make a Wish granters took us out to dinner to present Kass with the itinerary of her wish, the Australia trip.  She is so excited to go!!!!!

Dinner with Make a Wish granters

The Itinerary!

Ryan and I are a stressing a bit about the flight from LAX to Sydney, 14 long hours.  We are gonna try to keep her on treatment, but not sure if we will be able to.  The pump cannot be on for takeoff and touchdown, but also while she's on treatment she drinks so much water and will require to be getting up every 30 minutes, and also while you are a high altitude the medicine bags fill with air which could be deadly if a big enough air bubble goes into her broviach line into her artery.  So with all these concerns, I ask that you keep her in your prayers Saturday evening.  If we cannot keep her in treatment we will have to give her a double dose of phenerghan and knock her out for the flight, we do not want her throwing up the whole time!

Can't wait to share stories and pictures when our return from Australia.  Stay tuned!

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!

September 19, 2012

Happy 17th Birthday to our sweet Kassidy!

Last Wednesday, was Kassidy's 17th birthday.  Oh what a great day she had!  The day started off with her feeling pretty good that morning, that in itself is always fabulous.

In her first period at school, she received flowers and a singing balloon from one of her coaches and teachers.  We just love her coaches, they are so good to her!

Since she leaves 5 minutes early from each class, to prevent from tangling her tubes with other students going from class to class; she was alone in the hallways carrying her backpack, binders, flowers and singing balloon.  She had so much in her arms that the balloon kept hitting her head and letting everyone know that someone outside had a birthday. Hahahahaaha  She loved it!

The singing balloon & flowers!

Also at first lunch, coaches and a couple of the softball girls had a surprise party for her where they sang happy birthday, had cake, donuts and milk.   Talk about sugar overload!  But it was her birthday, but otherwise her sugar intake is quite controlled!  We let is slide.

That evening we took her and two of her good friends to her favorite place, Cheesecake Factory.  We had a great night spending time with the girls and just thanking God what a blessing it is to have Kass with us each day.  We never knew how our little girl would impact our lives.  I know that we sure appreciate things so much more now.  Special memories mean the world to us now.

Kass good friends Kayla & Bailey

It was so great to see her open the little knick knacks we got her and especially the big surprise we had in store for her for her special day; tickets to the Ellen Show.

Do you think she was excited to get tickets to Ellen?

This weekend ended being busy for her as well.  Her friend Tori came home from NAU, so Kass got to spend the night on Friday at her house and Tori came over Saturday to our house, of course with Ryan and I stressing a bit because she was away from us for a Friday night.  We prepared her medication before she left, but she still would have to hook the new bags and program the pump herself.  She did amazing and I think we underestimated her a bit!

When she got home Saturday afternoon she gave us a scare.  She came home with a splitting headache where she was having a hard time seeing and her feet were numb.  Ahhhhhhh!  She asked for a dose of IV decadron, something she never does.  That seem to the trick and she felt better after a couple minutes.  She's learning to listen to her body!  We are so glad, even though deep inside we were wondering what the heck does this mean; tumor growth or .....

Sunday we also had a small bbq for friends to celebrate with those we couldn't celebrate with on Wednesday.  Thank you to all those who were able to make it and share Kassidy's birthday celebration with us.  We appreciate you.

Happy Birthday!

Friends Trinity & TJ

This week was again the dreaded MRI week.  On Tuesday, Ryan actually took Kass to her appointment, he decided to take off Tuesday and Wednesday to be home to help me thru those two dreaded days.  Kass had it rough on Tuesday, she ended up throwing up in the bathroom at Steinberg before she had to go in the magnet, but she made it thru her MRI and came home so we could continue her treatments.  She also had a mishap in her car after coming home that day from her hyperbaric appointment, she got an urge to throw up and couldn't pull over and got it everywhere in her car.  That was not so fun for Ryan and I to clean up.  LOL!

Today we anxiously waited to MRI results, every time the phone rang we would jump.  Dr. Barbara called and gave us prelim results of the MRI and said the tumor is stable.  Sigh!!! I don't think we've ever been so happy about a stable MRI.  I guess July's MRI when she had 14% increase in her tumor scared us to death.  I guess we have learned to love stable! She said since Kassidy has only been on full dose for 3 weeks she hopes we see better results next scan.  We are hoping and praying and trusting God to guide us with the next step!!!

I wanted to remind you of two fundraisers coming up for Kassidy:

Kass will be this year's face of 

Ride for Life 

Saturday, October 6

A motorcycle poker run here in Las Vegas.  

So those of you that ride, please help us spread the word to your rider friends.

Also we have a date for
Kassidy's Army 2nd Annual 5k run & 
1 Mile Family Walk. 

at Bunker Park on 

Saturday, November 3rd at 9:00am 

We are inviting EVERYBODY!!! 

All Ages, walker friendly, strollers welcome, dogs on leashes.......

Also needing VOLUNTEERS!!! Please email us!!!!

You may now register at:

http://www.active.com/running/las-vegas-nv/kassidys-army-2nd-annual-5k-run-and-1-mile-walk-2012

September 10, 2012

Our trip to Boise ended being momentous.  Not only did it take us 11 long hours to drive because of all the construction, but more than halfway there, Kassidy's pump decided to break.   At that moment, I called Ryan so he would overnight the new pump and new tubing we were suppose to be already using, but was reluctant to do so because of the pump's bigger size and the fact it needs to be recharged at night.  Fortunately, Kass felt ok off medication for the rest of the evening.

The next day the pump and tubing arrived bright and early.  As I unpacked the box, I noticed that everything was in the box, except for the y-connectors.  OOPS!  Ryan had never learned the new pump so he didn't know that this new pump had different parts to it.  He felt so bad! He found a medical supply store in Meridian (close to Boise) that would gift me a couple y-connectors to see me through the weekend. I got the y-tubing and tried for 4 hours to make it work, but the pump kept giving me the error "down occlusion"; by then I was so frustrated not only because I couldn't get the pump to work, but by then Kass was now dry heaving from throwing up so much.  When I called the clinic they informed that for some reason the new pump didn't take any other kind of tubing except the kind they provided. Oh my gosh!!!

It was now 3:10pm Vegas time so I called Ryan in tears telling him that I would need the y-connectors we had at home.  At that same time as I spoke with him I looked at Southwest website and found that they had a flight at 4:20pm nonstop to Boise for $170.00 and it would cost $120 to send the tubing fedex.  I begged to please come bring me the tubing that friday evening and come help me get Kyle settled.  The amazing man he is, he packed in less than 10 minutes and arrived at the gate at 4:19pm. That evening we troubleshooted the pump together, got it to work and it only took an hour for Kass to start feeling better.  Ahhhh! The next day we spent helping Kyle unpack and setting up his room.

Never a dull moment!!!!

Kass saying goodbye to Kyle before we left Boise.

Monday, we started going back up in dose as Dr. B ordered.  All of us a bit sad that it would mean 3 bag changes a day, 3 blood draws a week, and less and less time in between treatments for Kass.  But it only took us 2 and half weeks to get Kass back up to maximum dose without really any problems.  So glad for that part!!!

We also started hyperbaric chamber treatment for Kass.  I had been researching the benefits and I can't believe more people are not using it.  After Kassidy's brain surgery we have noticed balance issues, memory issues, and even bit of saliva issue (she's producing way more than she used to and chokes on it quite a bit and even causes her upset stomach).  By reading about HBOT (hyperbaric oxygen therapy) when oxygen is pressurized it can help regenerate damaged cells or tissue, increase neural brain function, help reduce steroid dosages, helps body fight infection, and so much more.  So she had her first treatment on August 9th, again she did so great in the chamber.  What a trooper this kid of ours!  We will be doing 30 treatment, but we have already noticed better balance, better mental clarity, more energy.

The hyperbaric chamber! I get to watch Kass from the small window.  My hero!

Kass a bit bored in the chamber last Friday!

Also this last month we were fortunate enough to have Kassidy's story featured on two different publications here in Las Vegas.

Our friend Chantal wrote a wonderful piece about Kassidy in the Desert Companion Magazine:

http://www.desertcompanion.com/article.cfm?articleID=383

Maggie who did Kassidy's story last year about Kassidy's Army did an update on Kass in the Las Vegas, The View, newspaper.

http://www.lvrj.com/view/teen-hears-promising-news-about-her-rare-brain-tumor-166857746.html

Singer Ron Pope proudly wearing Kassidy's Army gear.  Thank you Ron!

On August 20th we held Kassidy's Army 2nd Annual Golf Tournament at Canyon Gate Country Club. Players, volunteers and our family had a great time.  We didn't have the amazing turn out we had last year, but I think it was due to that it was held on a Monday instead of a weekend day, so we hope to change that next year.  We still had great feedback from the golfers and had great raffle and auction prizes.  Thank you so much to those that came to play, sponsored, volunteered, and donated.  We appreciate each one of you.

Kassidy's Army volunteers ready to help.  Love you All.

Kass and her friend Alex at the tournament!

Those of you that would like to check out the pictures from the golf tournament you may do so here:

http://benniepalmore.zenfolio.com/p177026849

We took a small trip to Salt Lake City the weekend before school started, Ryan was very busy at school getting ready for the new school year so we escaped for a couple days while he worked.  We stopped to see our friend Catherine which we met in Houston at the Burzynski Clinic.  Catherine was battling cancer for the 3rd time when we met her, she is now cancer free thanks to Dr. B.  We got to spend some time with her in Park City, we had a great time with her.  After, we spend the weekend with my cousin Ari and her baby Thiago.  It was wonderful to hang out with them for a couple of days.

Kass and Catherine! We hung out in her balcony that evening.

Out to dinner with friends in Salt Lake City.

The night before Kassidy's first day of school she woke Ryan and I by calling us from her cell from the bathroom saying she needed help because she had thrown up.  Since, at night she is connected to an extension chord because she has to charge her pump she can't really make it all the way to our room to wake us.  She had thrown up all over the bathroom! Our poor baby!  Her sleep is so interrupted that when she sleeps she is out cold, so it took her off guard.  We felt for sure would miss her first day of school, but to our surprise she was up at 5am getting ready to go.  She said she felt fine and was ready for the day.

It's tradition to take a pic on the first day of school!  Can you tell she's not excited LOL

  I think she was excited for her first day as a senior.  Crazy, how time flies! We are so proud of our new senior.  We visited her counselor the week before school started to make sure her schedule was set, her 504 plan updated and make sure she's on track to graduate and low and behold she still is on schedule to graduate with her advance honor diploma and medallion as long as she keep a 3.5 or higher this year as well.  She was bummed to hear her gpa is now a 3.52 instead of her 4.0 she used to have, but my goodness all she's gone thru and she still has that great of gpa, we are extremely proud of her.  She will be taking 4 classes this year, Government Honors, Geological Studies Honors, English 12, and Foods. Since Centennial has block schedule she only will take 2 classes per day which is great.

She's only missed one day in two weeks so we hope and pray she can attend as much as she can this year so she can accomplish her goal.

Our next MRI is scheduled for September 18th.  Ryan and I are very nervous for this next MRI since it will tell if ANP is working.  We ask to please remember us in your prayers!!!!

September is Childhood Awareness Month!!!!!! Go Gold before Pink!!!!!
Please remember our children fighting and volunteer or participate in your local childhood cancer charities.