November 24, 2013

Last month's MRI results were stable!  YES!  Dr. B suggested that we continue to do monthly physicals and blood test to be able to stay on the trial for awhile longer.  He too feels that is best instead of cutting the chord completely to ANP, for a just in case scenario.  Also, he would like for us to follow up with a PET Scan.  Kass had one in May of 2012 so we already have a baseline and by repeating it could determine if there are any cancer cells left and if the tumor is dead.  At this time, we may decide to be done with ANP completely.  This will be at the beginning of 2014.

Kassidy's Army Run & Walk was success!  Thank you so much to all who always come support us and to those new supporters, without you it would not all be possible. We so appreciate those who donated, supported and volunteered.
It was such a great event  and it felt amazing to give back to Aurora and her family.  Aurora's family got the chance to make it to the event and give us a little update on her.  She had surgery the following Tuesday and her surgery went very well.  She is on her way to recovery!  Thank goodness.

We are hoping to help a new child every year!  Can't wait for next year!

Here are some of the pics of the event!
http://benniepalmore.zenfolio.com/p439872690

I know many of you have been wondering about Kass.  I'm sorry I haven't been able to answer all of you, there have been so many texts and messages!  Thank you so much for the thoughts and prayers!

As all of you know I had been boasting that Kass has not had any symptoms since she stopped treatment in July.  We have been so excited that maybe this would mean we are on the home stretch that we seemed to be feeling like "normal" family.  Making plans, enjoying each day and even talking with Kass about going away to college.

Well, about a week and half some symptoms came back, headache, nausea, and even the dreaded vomiting.  :(

She's been doing stairs at Majestic Park since she wants to get back into shape and that Friday she had to come home because she was so nauseous and had to throw up then slept the rest of the evening.

Three days later we invited her to hike Lone Mountain, since she has vocal chord dysfunction she had a bit of hard time breathing on the way up, but she didn't want to quit.  We would take short breaks to allow for her vocal chords to allow oxygen thru and then continue.  She made it and when we got to the top she had to throw up.  She had such a hard time going down that she needed help because she was walking so wobbly.  When we got to the car she asked if we could take her to Dr. Milne for an IV of fluids.

Kass and Dad, glad he was there to help her get down.

Smiles even after throwing up.

My tough girl!

And then we needed an IV of fluids.

That is one thing we miss having her broviach, I could just give her an IV bag at home.  Being on ANP which is very high on sodium, always made her very thirsty so now that she's not on treatment sometimes she forgets to drink water because for 2 and half years she has always felt thirst.  So she now is trying to always carry a water bottle.

So after this episode she had two more episodes of the same symptoms, so bad that she was throwing up straight bile.  The one Sunday is the one that scared us, where she just couldn't hold any liquids or food down and Ryan and I were all the way in Tempe Arizona and had to rush home.

We took Kass to the oncologist on Monday and he did a neuro test and blood test and ordered a stat MRI.  He too was concerned with tumor growth.

I know many of you say not to worry, but it is very hard not to.  Anytime Kass has any symptom our minds directly goes to tumor growth.  Unfortunately, when your life has been touched by cancer is hard not to think that way.

It's been a very hard couple of days for all of us, but most of all for Kassidy.  She has suffered quite the depression lately and we are very worried about her.  I don't want her to loose her sense of hope, but I understand her, it's been 2 and half years of this.  I get it!  She got a glimpse of what a little bit of "normal" was for a few months and to think that treatment is looming around the corner again is very upsetting for all of us.

We did speak to Dr. Marquis this morning and he told us that MRI results from yesterday are of a true  STABLE disease.  Thank you God for listening to our prayers.  Now why the symptoms??? That's the million dollar question.

Not two MRIs are sliced the same, so there could be a very minuscule change in tumor that is not showing in the different slices of the pictures of the MRI, but none measurable to 1mm or even to be alarmed for.  Also, blood test have been done and we are waiting on those results to see if they give us answers.  Very frustrating, but the worst case scenario has been ruled out which is a blessing.

Thank  you, thank you all for your support.  Sometimes these ups and downs can be a bit much and we have to tell you that we are emotionally spent.

October 20, 2013

So much to say!

Summer was soooo busy for all of us, from the moment Kassidy graduated from high school, till the end of summer, life seem to go into high gear.  Her graduation party was a success, so many came to celebrate such a special moment in her life. Thank you so much to all of you!

Graduation Party 

Ode to Kassidy

We were able to fit so many doctor's appointment that we couldn't get to with the craziness of year end senior stuff.  We finally got answers after her endoscopy that her esophagus had not been damaged from all the throwing up, no hiatal hernia, but her stomach did have to be dilated with a balloon to allow food to digest better.  This has helped her quite a bit.  Also, she finally received her cpap machine that we so long fought for and sleeps most night with it.  We don't worry so much about her dropping in oxygen levels at night.

The beginning of July, she managed to pull out her broviach port right out of her chest and did not even feel it.  She had gone to take coach Spencer, who was visiting, to CVS pharmacy to check his blood pressure because he had not been feeling well and while she waited in the car, she felt that her shirt was wet.  When she looked down, her port was leaking medicine right on her lap. Oh my goodness!  She was so freaked out that she drove herself to the hospital immediately.  When I met her there, I thought that I would see her bleeding profusely from the port site and that she would need emergency surgery.  To my surprise, the port didn't even bleed at all.  An x-ray showed that no debris was left behind, so we were sent home with an appointment for surgery to have a new one put in.

The Broviach!

Then mid July while we were on vacation, her new port fell out again!  We were a little more calm this time around about it and Dr. B suggested we wait till the August MRI  to make a decision on putting a new one back in.  Her chest was so sore from the old broviach site and new one, that we decided to take the chance and see what her tumor would do off medication for a month and half off her medicine.  And guess what?  August MRI showed stable results.  Thank you God!

Since her port fell out she decided it was time for a little beach time.  It had been 2 years since she had been in the water.

So, now Kass has been off ANP since July 24th, that will be a total 90 days without treatment.  Yikes! She has an MRI scheduled this week on Thursday, October 24th.  The results of this scan will determine if Kass is done with treatment or not.

I have to tell you that I am a nervous wreck about it.  I am afraid! If Kass goes off ANP treatment as of now, she will not be allowed back on the trial because the FDA still has a ban on new ANP patients and the clinic still does not know when the ban will be lifted.  This makes me so sad!  I wish the FDA would get off their high horse and recognize that ANP saves lives.

On the other hand, Kass has been doing great off treatment.  She is less tired and this is helping her with her college classes and job.  Yes a job!  She got one tutoring through a program at UNLV.  She works close to home.  We are so proud of her!  Not only that, but her headaches and throwing up are almost nonexistent.  Soooooooo thankful!  Nausea still comes and goes, but nothing like before.  I am holding my breath.  I have to tell you that I am almost afraid to celebrate it.  Could this be it???  Remission...  We only dream and hope.  Meanwhile, we are enjoying ALMOST feeling normal.

First Day of School as a College Freshman

Please, don't stop the prayers coming.  We have such an important decision to make this month!

We are also so excited to invite you all to the 3rd Annual Kassidy's Army 5K Run & 1 Mile Walk which is gonna be held at Bunker Park on Saturday, November 2nd.

This year we have decided to start paying it forward.   From the moment that we started Kassidy's Army we have always wanted to help others in need like you all have helped us, along our journey.
We have chosen to help Aurora who is a 10 month old baby born with an auto immune disease, heart problem, floppy airway that has required a trach and problems with her stomach muscles that she has a feeding tube.  

Little Aurora & her Parents
Her facebook page: https://www.facebook.com/PrayersforAurora13

3rd Annual Kassidy's Army 5K Run & 1 Mile Walk

Saturday, November 2nd, 2013 

Bunker Park on Alexander and Tenaya Way.

Opening Ceremonies 8:30am

5K Run 9:00am

1 Mile Walk 9:15am

WALKER & STROLLER FRIENDLY
REFRESHMENTS PROVIDED BY OUR SPONSORS
MEDALS TO TOP 3 IN EACH AGE GROUP
RAFFLE PRIZES & AUCTION BASKETS

We are in NEED of Volunteers for registration, setup, water station, finish line and clean up. Please email us at kassidysarmy@live.com


YOU may REGISTER ONLINE at:
http://www.hope4lives.org/kassidy-s-army-5k

Please SHARE this flyer!

Check out this year's shirts!

June 13, 2013

Well, I have to update you a little, sorry it's been awhile.  So much has happened!

Kassidy's softball senior game was an amazing day.  The younger girls always decorate and prepare the field before the seniors show up.  When all the girls arrived, except for Kassidy were wearing their Centennial jackets (she thought it was odd since she had not been told about the change in uniform)... As the seniors made their way to the field they all lined up with the younger players and proceeded to unzip their jackets.  They surprised Kassidy that day by wearing grey shirts for Brain Tumor Awareness Month, the "Never Give Up" motto  the back of the shirts, #11 (Kassidy's softball #) on their left sleeve and and orange bow with the grey ribbon and #11 on it.  Kass got emotional!  I must say that I could not be more thankful to her wonderful softball team for the support and most of all to her coaches.  Ever since diagnosis, Kass has felt part of the team even if she could not actually play the game, but her coaches knew how important softball has meant to her and they have made a commendable effort to include Kass and made her feel as in integral part of the team.  Ryan and I could not be more appreciative to them.

It was so great to see the stands packed, I had never seen them so full of family & friends that had come to see their own senior players and those who had come to see Kass step on the dirt one last time.  Family came from Wyoming, friends of Kassidy made the trek from all over the valley, coach Spencer made it from Texas, UNLV womens baskeball players came out and of course Kyle came home to surprise Kass.  Kass was put in the first inning, as she was announced by coach Spencer the crowd went wild and she actually got a hit which grounded towards second base.  She also played first base for just a bit.  What a proud moment for our family to see her so happy and have flash backs of the amazing player she once was.

First at bat in 2 years in a REAL game!

Playing first base

Can her smile be any bigger!

Senior Day

Channel 3 News came out to cover the story, but arrived right after she had batted, so they asked coach if they would put her in one more time so they could get it on camera.  So they did, this time she strucked out, but it didn't matter she again had a cheek to cheek smile that would not wear off for hours.  After the game, they presented each senior, escorted by their parents to the field and then coaches presented them with a hawaiian lei, tons of hugs, gifts and more flowers.  So emotional to see all these girls that Kass has grown up with to go on and play at their home field one last time, many to go on and move on to play in D1 & D2 colleges. So proud of them all!

Here is a link to the News 3 story:
http://www.mynews3.com/content/news/story/centennial-senior-softball-battles-tumor/hXt3jsOazE2NcoeeojqS7w.cspx

Kass got invited to speak at the Make-A-Wish Ball at the Paris Hotel to talk about her wish to Australia.  This event is a silent auction to raise funds for the organization and Kass happened to be one of the guests of honor.  It was fun to dress up and have a nice night out with a fabulous dinner.  She got to meet a girl about her age who has cystic fibrosis, they spent the night chatting. I always like when she meets other kids about her age struggling too so she doesn't feel alone.

Make-A-Wish Ball

With the invited Make-A-Wish kids and Mercedes from 94.1 & Kendall Tenney

Mid May Centennial Softball made it to the state softball playoffs.  They dominated their opponents during them outscoring them 77-11.  Wow! They definitely earned their spot into the Championship game beating each team one by one.  That day we arrived early at the UNLV softball fields and were excited to see all the girls wear their grey shirts again.  Ryan and I picked our spot in the stands, as we sat by ourselves, we remembered how 2 years ago Kass was having brain surgery while Centennial softball girls played for the State Championship, while already getting emotional, Kass came up to us clearly upset.  We were worried she was not feeling well, but she was upset because it was gonna be the last time she would ever wear a Centennial uniform and coach had asked her to say a couple words of wisdom in pre-game huddle.  She wanted a hug and guidance on what to say.  According to some of her teammates she did a great job, but could not stop the tears from falling.  She said: "We are not done yet!" "This may be the last time I step foot on a softball field and the last time I can call myself a ball player, I love you guys........" I guess there was not a dry eye in the huddle.  The girls proceeded to play a stellar game, winning 13 to 0 against Palo Verde.  Making Centennial Varsity Softball first team in the state to ever win a back to back championship in women's softball.  What a day!  Couldn't asked for a better way to celebrate Kassidy's 2 year survivor anniversary.

My friend Don caught this moment, I didn't know anyone was watching.

Pre-game huddle 

Love this picture of her teammate Kate consoling Kass.

2013 Nevada State Softball Champions

Congratulations Kass, 2 year survivor!

On May 21st we had Senior Awards Night at Centennial HS. Kass was invited to be recognized for her awards, honors and scholarships.  We are so very proud of her, she finished her high school career with a 4.2 gpa and received her advanced honors diploma, high honors graduate, and 4 academic scholarships; no small feat with all the days she had to miss because she didn't feel well or had doctor's appointments.  Not only that, but she got the last award of the night, "the principal's award" given to her for her bravery, hard work, never give up attitude and perseverance.  She accepted her award and when she turned around the whole audience was giving her a standing ovation.  I broke down sobbing! She worked so hard to maintain her grades up and I know it wasn't easy.  There were times she was so tired she said she would have to read things 2 or 3 times to understand and also times when she was so nauseous she just wanted to come home and sleep.  So Ryan and I are beyond proud of her for trying so hard.  She also attended the Public Education Foundation recognition luncheon at the Venetian Hotel where she was presented two of her scholarships.  Great to see all the kids around the district that received these great scholarships, some friends and kids Kass grew up with.

Mr. Day presenting her the last award of the night, the Principals Award

After the ceremony each kid is to give their parents a rose for supporting them.

At the Public Education Foundation Recognition Luncheon with my girl

Getting recognized for her scholarships

We also found some time to do Kassidy's senior pictures, I know.... kinda cut it close, we've been so busy.  On picture day I prayed she would feel good enough for pictures, since she's been battling with nausea so bad.  We decided on Nelson's Landing which is about 1 hour away towards Arizona, we love the backgrounds and it's rich colors.  We met Dana, the photographer out there around 5:30pm since she loves the natural light around that time.  At first Kass was not happy about this whole picture thing, she had not tried one of the outfits I bought for her till that moment and again I prayed they fit and looked good on her.  I was asking God for a big favor there!  Dana was so good with her and Kass immediately felt very comfortable with her.  The pictures turned out beautiful and I think she's glad I made her do it.  She looked beautiful!

Here is a link to Dana's blog and Kassidy's senior pictures:
http://www.urbanvisionstudios.com/blog/kassidy-class-of-2013-las-vegas-senior-portraits/?fb_action_ids=10151441417500163&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582

Softball banquet night was another great night to honor these great girls. Kass got her navy letter for lettering in a sport 4 years in a row and the "Never Give Up" Award from the coaches.  Coaches got emotional and so did the parents including myself.  I believe these group of girls were very special to the Livreris, they are loosing 7 seniors this year, most of them been on varsity since their freshman year including Kass.  But since Kass will be going to UNLV this fall, they invited her to come back and help coach the catchers next year, she was excited and gladly accepted.

Kass with her amazing softball coaches

The first weekend in June, Kass decided last minute to attend Nevada Childhood Cancer's Teen Retreat at Torino Ranch, this always causes me stress because that means someone else will be doing her medicine, cleaning her port, preparing medicine bags etc.  But I was sure glad she got the opportunity to go.  She got to see others are going thru something similar and even sometimes worse than her.  We were asked to write letters to her about what she means to us, she came saying she had a fabulous time, but was very emotional for her when she read our letters, especially her brother's letter.   So sad it's her last year going to camps since she will be 18 this year.

Graduation day came fast!  Family came in from Utah, Wyoming and Panama.  We also got a call from Ron Kantowski who works for the Review Journal and first wrote about Kassidy's story in 2011 when Kass was first diagnosed, he wanted to follow up with an article on Kass and didn't want to miss her graduation as he had promised he would 2 years ago.  She was all smiles during the ceremony,  her name was called and we went wild, we could also hear cheers from other sections of the Thomas and Mack.  She opted to not take her dose during graduation so she wouldn't have to carry her backpack, she had her zofran ready and we carried her throw up bags just in case, but she felt great!  I still can't believe high school is over, she was just going to kindergarten.  It was so great to spend time with all the family this past weekend, we made a family reunion out of it.

Before the ceremony

Proud moment for us!

All smiles!

Some of the family that attended, we had a couple missing in the pic

Our family!

Here is the article that made first page in the sports section of the Review Journal:
http://www.reviewjournal.com/columns-blogs/ron-kantowski/graduation-marks-proud-step-forward-kassidy

Now after probably the most emotional month and half this week we've been busy getting things ready for Kassidy's graduation party and some doctor's appointment.  Kass will need to have another sleep study with the cpap machine to see exactly how much oxygen she will need and what type of mask.  Her first sleep study showed there are times where she dips down to 64% oxygen at night, this could be causing her non stop nausea and sometimes headaches.  This month she will also have a swallow study since she has been having a bit more problems with choking on liquids when she drinks and an endoscopy to check her esophagus, stomach and see about her hiatal hernia.  Last time, we went to see her local oncologist he also referred us to a neurologist so we go see him at the end of the month.  Will also be following up with her endocronologist who is working on helping her with her adrenals that were suppressed because of so much steroid use.  She seems to be doing much better with her thyroid issues that also the steroids damaged and is now loosing weight little by little.  She's so excited about this.  Clothes that have not fit her in her month are not fitting.  What a great feeling for her!

And today, we have the dreaded MRI, please remember to keep Kass in your prayers.  We are hoping for a stable scan and if that happens that means we are on our way to weaning her to her final maintenance dose of 160ml on bag 1.  Also we are hoping to have a mediation with the insurance today about their coverage of her treatment, keeping our fingers crossed big time on this one.  We can't handle much more of these insurance issues.  We should know of their decision in about 5 days.

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.