April 30, 2013

Let me start by letting all of you know that MRI of the brain and spine ended up being stable.  Thank you God!!! We had a little bit of issues again with Summerlin Hospital NOT putting both MRIs on one cd after promising me they had.  Nope!!! I had to spend $26 to send the cd overnight which only had the brain and not the spine.  LOL!  I had to laught, before I had a coronary that day.
I still don't know how hard it is to burn all MRI images in one or even two.  But whatever, I have also setup the clinic with an online password so in the future if we have any images done thru Desert Radiology which is the company that Summerlin Hospital uses, then the MRI images can be seen real time in Houston as well; so no cd would be needed to be sent via Fedex.  I don't want to go through this again.

This is the MRI cd, check of the modality: "both" 

When we spoke to the doctor in Houston they were not sure either what caused Kassidy's bad headache while throwing up.  All of the doctors agree that it could have been that she had some type of sinus issue and that combined with the rising inter cranial pressure.  It has only happened once more, last Sunday, but thank goodness it was not as severe as the one from the scare.

The week before Kass had a pretty good week.  No throwing up for a whole week we were so excited since prom was that same week.  We had been working hard getting her dress ready.  She's not a fan of dresses so again we decided not to put her through shopping and trying them on.   We did measurements at home and went online and she picked a dress in less than 2 minutes.  When it arrived we took it to a wonderful lady that turned the beautiful strapless dress to a perfect dress for Kass that covered her broviach port and arms that she is not so fond of right now.  Not only that, but Kass has lost almost 10 pounds so the dress had to be taken in.  She's been working hard.

Prom day came and I was so scared because she kept telling me she was not exactly feeling that great.  After 2 zofrans she seemed ok.  Her hair, makeup, shoes, dress all turned out beautifully.  Our little girl felt pretty that day!  Hooray!!!! You could tell by the smile on her face.  Ryan and I were proud parents and very emotional since it is Kassidy's last high school dance and that she took a very special person to prom with her.

You see, Justin, her prom date is delayed.  But Justin is one of Kassidy's best childhood friends.  They grew up together and while growing up Kass has always protected Justin, she even could decipher his speech better than us adults because of his speech impediments.  When I told her she should find someone fun to be around to go to prom with, Justin came to mind right away.  She wanted to have fun at prom and at the same time give Justin the chance to be able to attend a high school prom in his life.  This melted our hearts as well as Justin's mother, our friend Sandy.  All Sandy could do was cry when Kass called her to ask permission.  It was truly an emotional day for both of us moms!

Justin and Kassidy from babies on....  Best Friends

Beautiful Kassidy!

Her dress was perfect!

Kass has been teetery on her feet since surgery so heels are out of the questions, these were just perfect!

The whole group that Kass and Justin was a great group.  Pictures started at our house, then we drove them to Bellagio where a photographer did pictures of them by the Fountains and the atrium at Bellagio Gardens.  It followed by dinner at Circo Restaurant at the Bellagio and the limo picking them up to go see Recycled Percussion Show at The Quad.  They then returned to Circo for an array of amazing desserts that the chef sent specially for their group.  They finished their night at our house to watch movies.  It was truly a great night!!!

The girls!

The couples!

Kassidy with the Chef of Prime Steakhouse

At the Atrium

 On Sunday unfortunately Kass started throwing up. A total 360 from the week before.  :(  As of today she had not been able to hold much food down.  She even tried going to practice yesterday, but she threw up so much one of the grandmothers of one of the softball players was very concerned.  So I had to go pick her up at the fields.  I proceeded to give her IV fluid throughout the day, combined with decadron and zofran.  By this morning she again threw up, but was glad that I had already had a scheduled appointment with Dr. Milne for Kassidy's monthly checkup that goes back to Burzynski.

I had given her Phenerghan and she had been able to sleep most of the morning, but as soon as we got in the car for the doctor's appointment she had bad nausea again.  She popped another zofran.  When we got in to speak to Dr. Milne she explained her symptoms.  He immediately had her lay down on the table and learned that she had a hiatal hernia.  This is when part of the stomach goes up the esophagus and it can be very painful and cause nausea, vomiting, etc.  He had her take some deep breaths and pressed on her stomach and pulled down and immediately she felt relief.  All she could say that was "that was weird".  On the way home, she wanted to stop at Whole Foods for their organic food bar; what a great sign to be hungry.  Poor girl had not been able to really eat for 2 days...... So thankful she's finally had relief!!!

We are just hoping she keeps feeling better for her big day on Friday.  We are so excited to tell you all that this Friday, May 3rd, Kassidy will be put in to play part of the senior softball game against Rancho High School.  This will be the first time in two years since she has actually set foot on the dirt for a real game.  The game start at 3:30pm and would love if everyone cheering for Kass wears their Kassidy's Army shirt.   ALL are invited!  The softball fields are located right behind the track.  Can't wait to see you all.

Also would like to mention a couple of fundraisers that are coming up for Kassidy:

Saturday, May 4 -  Texaco on the Corner of Centennial and Durango 
We will have a booth selling Bulldawgopoly, Kassidy's Army Cookbooks, Bracelets and Shirts.  If you would like to volunteer, please email us at kassidysarmy@live.com

Saturday May 18 - Kassidy's Army Garage Sale
Currently taking donations, which are tax deductible by Hope 4 Lives.  Please call 702-339-2415 to call for pick up.
Also if you would like to volunteer email us at kassidysarmy@live.com or hope4lives@gmail.com

Saturday June 1 - Amica Triathlon Volunteers
Volunteers Needed, each volunteer will help raise funds for Kassidy's Army/Hope 4 Lives which 100% will go back to Kassidy.
You can sign up to volunteer at www.amicatriathlonvegas.com PLEASE NOTE: you are volunteering for Kassidy's Army
or email Mary Christensen for any questions at marychristensen@me.com

Saturday November 2 -  3rd Annual Kassidy's Army 5k Run & 1Mile Walk
More Information Coming Soon

***** We would also love to do another golf tournament and a poker tournament ******
Looking for someone who can help organize these events.  Please contact us at kassidysarmy@live.com

April 17, 2013

It's been a very frustrating month for us.  It truly has felt like when it rain it pours these couple of weeks.

A couple of weeks ago we got a letter from our insurance that the portion they have covered for the Burzynski Clinic for a year has now been denied and paid in error.  That they never knew it was a clinical trial.  My gosh!!!!!!  What insurance partially pays for a treatment for a year and then retracts and wants all their money back? Ahhhhhhhhhhhhhhhh!

Our insurance about a year ago started paying for a portion of some of the Burzynski charges, but did not cover the year before of what we have paid out.  We still were happy that some of the blunt of the financial burden was taken away from us at that time and we could breathe somewhat even though they were not paying 100%.  But now our future hopes of that the insurance would cover more have been crushed.

We immediately appealed to our insurance and provided all requested paperwork, but last week we learned that our appeal has been denied.  Insurance feels that the clinical trial is not necessary because there is an acceptable treatment for this type of tumor, radiation; according to them.  Little do they know that radiation does nothing for this type of tumor.  UGH!  I want to scream it in their faces!!
So Ryan and I are working on getting help to deal with this huge bump in the road.

Kassidy's ANP dose on bag 1 is now 300ml.  She's had a bit of trouble with this dose causing quite a bit of nausea.  Almost every morning she has had to take zofran to go about the day.  Strong smells immediately sent her into vomiting mode.  She can't even ride the bus home from softball games because of the sweaty smells of the baseball & softball team combined.  She was so bummed about this!  But she still tries to make it to most games, she loves cheering and help coach her team on.

This Monday, we had a game against Gorman HS and Kass was helping put softballs on the tee for batting practice before the game.  Well, while she was doing so she started feeling sick and got up and moved over to throw up in one of her handy dandy vomit bags.  At the same time she got a seering pain in between her eyes, right by her forehead.  So bad, she started screaming and the girls and coaches came to her aid.  She proceeded to black out and fell over.  I got a call from coach Livreri a bit panicked so I immediately flew up to the school.

When I got there, Kass looked much better according to all of them.  We applied ice to her head and put her in the shade.  I wanted to take her to the ER, but she said she felt much better and wanted to stay and watch the game.  I throughly assessed her and she truly looked ok so I stayed with her just in case.  After we got home again she got a big headache again so we gave her IV decadron and advil and it lessened it enough she could go to sleep.  That next morning she stayed home from school because her headache was still at a 4.  She woke up late and ate lunch, but seconds after her last bite she was running for the garbage.  She proceeded to throw up all her lunch and again the seering pain.  So bad again that she said she was gonna black out again.  By then I'd had it.

I called Houston and they suggested a Cat Scan or MRI.  So I called her local oncologist to also get his opinion and help me set it up and get authorization thru insurance, since anything the Burzynski Clinic orders is not covered.  The clinic here was hoping to get me in for a stat cat scan, but could not get me in till the next day.  That evening when Ryan got home we talked it over and agreed that an MRI would be better since CAT scans give out radiation and she is due for an MRI here in the next month anyways.  So this morning I called again and tried to have the clinic setup a STAT MRI, but the fastest Kass could be seen would be next Tuesday!!!  WHAT!!!!  It's so hard to believe that STAT means waiting days in this town.  Unbelievable! I even asked my friend who works at Steinberg for help and unfortunately one of her magnets was down and she too could not help.  So off to the ER we went.

Our poor baby girl icing her head and getting fluids on Tuesday!

I had been waiting all day from word from the insurance on authorization, then schedule, and then for my friend to help us; so Kass had been off treatment since 10am this morning and was not feeling well either.  I was so frustrated by this afternoon that I decided I would just go to the ER, even though it is definitely not our favorite place to be.

Results on MRI showed no edema (swelling) or brain bleed, but again they could not tell us exactly if there was growth.  But something in their report raised concern in Ryan and I because it said mild enhancement on c3 of her spine.  I don't remember ever having tumor that low on her spine.  Again, we've got the cd to overnight to Houston, this time made sure I had both brain and cervical on the cd, but unfortunately by the time we got home Fedex is now closed.  So the clinic will not get the cd till Friday.

We really didn't get many answers tonight at the ER.  Hoping in the next couple of days we do.  On Monday we went to the endocrinologist to check on Kassidy's hormones, this week Kassidy's tumor was sent to Colorado for testing to see about the mutation of the V600e gene, on Saturday we finally get to do the sleep study.  So hopefully all these tests soon give us something to go on.

This mom is completely exhausted and I don't know how much more stress we can take.  Please, please, please, keep us in your thoughts and prayers.

Here are some pics of fun things Kass got to experience the since last update:

Kass at the Bowling Banquet Lettered for the 3rd year in a row.

Team Captain Plaque

Kass and I got to go to Cali to cheer on Centennial Softball!

She felt so great there she even got to help coach warm up the girls.

March 8, 2013

VERY QUICK UPDATE!

Most of you know that we had to run with Kass to the ER on Monday, she called me from practice saying that she could not walk and was having trouble seeing.  She was so upset on the phone I flew up to the high school.  When I got there she was crying and was completely scared! Ryan had called the clinic and the doctor suggested we take her to the ER to make sure there was no brain bleed or edema.

At the hospital the doctor opted to do an MRI since she was due for one and the MRI would show everything we needed to see.  Unfortunately, she was on treatment when we got there so we had to wait four hours before they could do the scan; so we hung till it was time for the scan.

The scan showed no brain bleed or edema.  Thank goodness!  Ryan had brought with him a copy of the last MRI we had done through Steinberg so they could compare because we were wondering if the tumor had grown.  The radiologist could not compare scans because the last MRI was thru Steinberg and the hospital uses Desert Radiology.  OH MY GOSH!!! So we got a copy of the cd so we could send via Fedex the next day.

On Wednesday I got a call from the Burzynski Clinic saying that the cd only had the MRI of the brain and was missing the upper cervical.  AHHHHHHHHH!  So I called the hospital and they sent the rest of the scan via Fedex as well.  When I spoke to the doctor in Houston they said they would love to discuss the MRI and all of our questions in the appointment we had already made with Dr. Burzynski for today at 8am.  What's another day, right!!! Hahahaha Ryan and I didn't sleep well last night.

Well, the MRI shows STABLE tumor in both the brain and upper cervical spine!!!!!!!!!!!  Hooray!

Dr. B feels that clinically Kass is still doing very well.  Her symptoms are not being caused by tumor growth which is such a relief for us.  But the fact that they dissipate is a good sign.  It's hard to pinpoint exactly what is causing her symptoms because her tumor is in such a vital part of the body.  Any swelling or shifting in different parts of the brainstem can push against a certain nerve that controls that part of the body.  Brainstem is as delicate as you can get!

At first, Dr. B felt that attacking the tumor at a high dose would break it down fast which it did at first, but then she tapered off.  So now that it has been stable he wants to lower Kassidy's dose again to 330ml on bag 1 for 2 weeks and if she does well at that dose then lower it to 250ml.  Then wait 8 weeks for an MRI.  The goal is to lower it to 160ml where she has very few side effects, a "maintenance dose".   At this dose, she would be able to rest better, function better and less stress on her body, but still maintain the tumor from growing and maybe after some time start breaking down.

He has seen that slow growing tumors like Kassidy's take longer to respond to treatment, versus an aggressive tumor that usually shows immediate response.  He feels that Kassidy's tumor is going to take a while to treat.  Not what we wanted to hear, but I am so glad he's always so frank with us.  He did mention a patient he treated for 10 years at a maintenance dose and after a couple years the tumor started to slough off and eventually it almost went away.  This was almost 25 years ago and the patient is still alive.

We know that ANP is a treatment, that has very few side effects compared to the others that are out there.  So if this is what we have to do, then that's what we will do!!!  Continue treatment!  We trust Dr. Burzynski.

Plus, we are afraid that if she does stop treatment completely the FDA would not let Kass back on since right now they are not letting any new patients on the clinical trial.  I pray that someday the FDA gets that his treatment is saving lives and that Dr. B is a genius and has found a cure for many without all the nastiness that come with chemo or radiation

Dr. B also said Kass will not need another PET scan unless she has significant tumor activity.  Last PET scan showed no activity in Kassidy's tumor so unless she start showing signs that there is activity there is no reason to put her through that test again.

All in all, the backpack is not going away anytime soon! We are hoping that lowering her dose will allow for Kass to keep her tumor from growing or even become more aggressive which sometimes these tumor can do.  That getting down to 160ml on bag 1 will allow and give her body a bit of a break and continue to do it's job without causing to much havoc.

The reality is that our journey may be a long one!   I hope and pray that God gives all us strength and means to continue this hard battle as long as we need to.  That Kassidy stays strong and motivated to continue to fight.

January 28, 2013

Centennial 2013 Varsity Girls Bowling

Well, we are at 400 ml on Bag #1.  Yeah! Success! We were able to reach the lower dose in 20 ml increments every day.  Today, is the first day she hasn't felt exactly well, but it's not too bad.  Thank goodness!  We were afraid that it would be harder to wean like last time, but we were glad it wasn't so.

Now we stay on this dose for 6 to 8 weeks till next MRI!  And hoping and praying that she has no growth and then we can go lower.

Kass had a bit of an accident last Wednesday at bowling practice.  As she went to bowl for some odd reason her ball got stuck to her finger and since she was in the momentum she fell very hard on her right knee.  Instead of calling me or coming home she stayed and watched the rest of practice.
When she got home she immediately told me that she had fallen, we looked at her knee and it was already pretty swollen and had a big knot.  We iced it all night off and on and gave her advil before bed.

The next morning, she woke up not being able to walk.  She had hobbled over to Kyle's closet and grabbed his old crutches and was gonna try to go to school.  SMH!!! Her leg was extremely swollen and in so much pain that I called the clinic for their opinion.  It was so early in the morning that they instructed me to go to the ER since they are equipped with everything.  We got to Summerlin hospital after finnagling her leg, crutches, and wheel chair in my little Camry.  It was quite a funny site!

After a morning at the hospital, they did an x-ray which showed no fracture!  YES!  They gave her a schnazy knee brace to immobilize it and asked us to follow up with a pediatric ortho the next day.  When we got home she said she wished she had a catheter, it was really hard for her to keep going from the bathroom to the couch.  That night we opted to take her off treatment since it would allow for her to sleep thru the nite without to have getting up and rest her leg.  She said it was the best rest she's had in awhile.

The Brace!

The orthopedist confirmed no fracture, but could not tell if there was any ligament damage because her knee was still pretty swollen and painful.  He asked us to come back in 2 and half weeks to check again and that he would prefer she stayed off her leg completely for a week.

This bummed Kass completely because Regional Playoffs for bowling start this Tuesday.  It not only bummed Kass, but Ryan and I as well.  The one sport she can do and now cannot take her team to playoffs.  Ugh!  We were all so disappointed.

She has not gone to school and has stayed off her leg pretty much all weekend long.  Her leg seems to be much better and she has religiously kept icing and taking her anti-inflammatories.  She has been able to walk without crutches since Sunday so we will see about tomorrow.  She would like to try to play!  It's her stubborn genes!! We are hoping and praying she can.  So tomorrow we will be there to either support Bulldog Bowling or watch Kass bowl.

UNLV Rebel Women's Basketball Team
Supporting Kassidy's Army
Thank You!

January 22, 2013

Well, Kass did great during the actual MRI.  She took a phenergan about an hour before the scan and she felt pretty good throughout the whole test; she slept thru it.  After the test she wanted to come home and eat, which is always a great sign and especially when she doesn't throw it up.

So I woke up today feeling a nice sweet calm, it was sure a welcomed feeling.  I believe God was telling me it was going to be allright.  Waiting for MRI results never gives us a warm fuzzy feeling.  So much is riding in one sole test. It's crazy!

The MRI came back stable!  Yes!  I'm not gonna lie, with all the symptoms Kassidy has been having lately we were afraid we had growth, but we didn't!!! Praise God!!

As of tomorrow, we got the go ahead to start weaning Kassidy of Bag #1 from 500ml to 400ml, we will again do it little by little as to not cause too much havoc with her system.  Dr. Burzynski wants her to only go down to 400ml and then wait 6 to 8 weeks and do another MRI to make sure that the tumor has not grown and is stable, then at that time if it's stable we can lower it to 330ml.  He wants to be cautious since last time we tried to wean her tumor grew14%.

Also, he says her new symptoms do not correlate with a stable tumor so he would like us to investigate further with the eye specialist, endocrinologist, etc.  He does say maybe some of the symptoms could be hormone related or even steroid related.

Next scan we will also have a teleconference with Dr. Burzynski so we can discuss how much longer Kassidy will be on ANP.  This is exciting for Kassidy, she had a great day and so did we.

We also found out today that Kass made January student athlete of the month at Centennial High School for bowling and she also made top 16 in the division to go compete individually in a elite state tournament.  How cool is that!  We are so proud of her and her accomplishments.  Our true hero!

January 17, 2013

Mid December, we finally had to order a wheel chair for Kassidy.  That was one of the hardest days for me.  I called the nurse at the oncologist office and couldn't even speak, so I had to call back and was glad to get her voicemail, I left her a message with the best composed voice I could muster at that moment.  After the call, all I could do was sob in my car as I drove to one of her bowling matches and then came the anger.

I was angry because we can see that her body is deteriorating and that she cannot do the things she wants to do.  Her legs are getting to where they hurt and swell after a long week at school and she's getting where she cannot walk long distances. 

That same day when I got to her bowling match she pleasantly surprised me by bowling one of her best games.  She bowled her first 200 game!!!!!!  I immediately forgot why I was mad and couldn't be happier for her.  She was so excited! And I was thankful to God that I could be there to witness it.

Our moment of triumph ended quite quickly after we got home and had dinner and she proceeded to throw up everything she had eaten.  Dammit!  The tumor reared it's ugly head.  But even an episode of vomiting couldn't stop her happiness, she was still so proud of herself for her bowling such a great game and so were we.  It put it all in perspective the rest of the evening........

That next week she was so excited cause Kyle was coming home from college and the day after that my family from Panama was coming for Christmas and New Years.  She loves having her brother home, she truly misses him.  And we haven't seen my family over a year so we were all excited to have everyone together for the holidays.

That Saturday after Kyle came home, a friend of ours had gotten us tickets to the Maaco Bowl football game where Boise State vs Washington were playing here in Las Vegas.  Kass was excited to spend time with her brother, but that morning she woke up with the most horrible migraine she's ever had.  She was in tears!  For Kass to cry in pain is very rare; we knew at that time it had to be bad.  We spent the morning icing and massaging her head, administered a dose of IV steroid, gave her some advil, and even used our new pain MVT (micro vibration therapy) device.  The combination of all these made so the headache was bearable.  We asked her if she just wanted to stay home, but she said that the tumor would not ruin her plans.  So she grabbed her warm Boise gear and headed out the door with Ryan, Kyle, and Kaela.  She had a great time!  So glad!!!  Sigh!

Go Broncos!

We had such a great time for Christmas .  Our home was full of family from Panama and Utah, we could not asked for a better way to spend the holidays.  After Christmas, our whole family took an amazing trip to Sea World, exploring San Diego, Disneyland, Santa Monica, and LA.  The previous six years our family had always opted to go on a family trip instead of buying gifts for Christmas.  It was actually an idea that Kyle and Kassidy had come up with years ago.  Ryan and I loved the idea of eliminating the craziness of buying the right present for each other and instead making memories, they usually last longer.  Over the years, it has made Christmas a bit less stressful and truly more enjoyable and we have had the chance to go to some great places, but of course now it's a little harder with all of Kassidy's medical bills.  We are so thankful to my aunt and uncle for gifting us such a great trip this year.  We are truly grateful to them!!!

Family at Bellagio Christmas Gardens

Sea World!

Kass and Kyle trying their luck at ring toss

Disneyland

New Years Eve at Downtown Disney's Jazz Kitchen

Chinese Mann Theater

Santa Monica

Cars Land

After we were back to real life and the family was all gone, it ended being a very hard week for all of us.  Through this cancer journey you get to meet other parents and children going thru childhood cancer. We keep in contact, console each other, ask each others opinions, keep up with each other stories and struggles.  Well, that week we lost three children who had been courageously fighting; Amelia  who was fighting a DIPG brain stem tumor, Chris who was fighting an ependymoma brain tumor, and Micah, fighting a brain stem ganglioglioma (same tumor as Kass).  We were devastated to hear the news of all three passing all in the same week.  I could not imagine the pain these parents feel, the emptiness that's left in their lives.  My heart, my prayers, my deepest sympathy goes out to each of them.  I hope God can heal their hearts from such a big loss.

Also, that same week Kass was having more troubles with saliva issues where she has been choking more while sleeping, more pain in her extremities, more nausea and her right eye has been doing funny things; all this freaks us out and makes me think that the tumor is growing.  Of course right before our MRI next Monday the 21st to give us more anxiety.   Ahhhhhh!  

Meanwhile, also Michael who is fighting medulla blastoma and  Easton, Bishop, and even Amber who too have the same diagnosis were struggling as well with oxygen problems, seizures, migraines.   It's so hard living in fear for your children's life!!!  Sometimes feeling helpless for your own child and those of others going thru the same struggles.  I say it's not fair!!!  Times like these is when I ask God to please help me believe that our children's struggles are not in vain and to give us strength to keep putting a foot in front of the other everyday no matter what the day brings.

This week and next week we have all kinds of doctors appointment for Kass.  We would like her eyes checked, her monthly checkup done, MRI completed, chiropractor and be seen by her local oncologist.  We believe it's imperative to do a sleep study to make sure Kassidy's level of oxygen are not dropping too low at night because of her swallowing and saliva problems.  Hopefully we can talk the insurance into believing the same.  Also, Kass will be seeing the eye specialist to take a look at the back of the eye to check the problem we are seeing with the eye and of course the dreaded MRI to check on the tumor itself.

We are hoping and praying for some good news this next week.  Kass reminded me that if she has stable tumor she would like to start her weaning from the medication.  I hope we can do that soon too.  We are crossing our fingers!

Will keep you posted on MRI results!  Prayers please!

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!