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.