July 30, 2011

It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up -- that we will begin to live each day to the fullest, as if it was the only one we had.

- Elisabeth Kubler-Ross

Another person looses their battle to cancer yesterday.  Rob Grimshaw, another Las Vegas resident who recently went to the Burzynski Clinic for answers.  He was recently approved, but had fallen ill after his return from Houston.  Rob also had a very rare form of cancer called epitheloid carcoma of the skin.  Our prayers are with his family and glad that Rob is no longer in pain.  Here is the link to his blog:

www.robgrimshaw.blogspot.com

Today I sit here with an empty house with a little peace and quiet.  Ryan is out shooting guns with friends out in the desert and Kyle & Kass and friends are enjoying lunch at Buffalo Wild Wings aka BDUBS for the Donation Fundraiser they are having for her today.  I can't tell you last time I had a moment to myself with my own thoughts; life has been a whirlwind these past two months.  Even with this much time that has passed, I still feel like we are living somebody else's life, a bad dream that we will wake up from soon. Our days are mostly good, but we also have our bad days, those are the days when getting out of bed seems like a feat.  Day by the day we struggle to find normalcy and some kind of routine around Kassidy's treatments, blood draws & dressing changes.  It's been a little harder since Ryan is back to work, so now I have to find what schedule will fit Kass & I for the long run this fall.

Thursday, we met with Dr. Milne, the MD that will oversee Kass every month to do her physicals and didn't hesitate when we asked him about signing the 1572 form which I spoke about in the previous blog entry.  What a wonderful doctor, he sees the big picture and is excited to embark in this journey with us.  What a blessing!  We are very fortunate to have found him, thanks to the Appelzoller family which referred him to us.  

Dr. Milne will also help us with getting Kass off decadron (steroids) into a more natural anti-inflammatory.  Kass in her own words about decadron "I'm not a fan!".  She hates that way it makes her feel and most of all makes her look.  She has gained 10 pounds and it also has given her swollen cheeks.  She says she can feel her cheeks jiggle when she walks and sometimes in the evening they hurt.  

A couple weeks ago I spoke to Jason Merkle's mom, a mom of a previous patient of the Burzynski Clinic, who told me when her son Jason was on the antineoplaston treatment as well and they had opted to not use steroids because of the long term side effects.  That instead she used a combination of bromelain and inflavanoids instead.  She also told me after Jason's treatment she also found a supplement called Boswella.  According to Dr. Milne with the Burzynski clinic's approval we might be able to use a combination of those instead of decadron.  Her new Las Vegas oncologist also agrees that we need to wean her of the steroids as well, which today she had her first less dose and so far so good.  Again, our biggest worry is her having major seizures as the tumor starts to breakdown; that is why she needs some type of anti-inflammatory.  Here is the link to Jason Merkler's story: Very promising!

http://www.burzynskipatientgroup.org/jason-merkle

On Friday was an extremely busy day trying to get caught up on everything, but in the evening we headed over to the Pursel's for the Dance Party fundraiser.  It was great to see all the kids that came to support Kass and we are so thankful to the Pursel's for offering their house for the event. We had a lot of fun watching them dance and putting our moves in the mix.  Indeed a good day!

Some of the kids at the dance party.

Kass with her buddies Alex & Pamela!

Tonight we hope to see you at BDUBS!

July 27, 2011

What a day, yesterday! We woke up really early to make sure we got Kassidy's treatment going before we had to leave for our appointment with the new oncologist.  The new oncologist that had signed the 1572 form that was required by FDA before and then the next day wrote a letter to Dr. Weaver in Houston recanting his story and wanted his name removed from all the paperwork.  We were a little apprehensive to go meet with him for the first time, but we feel Kass should have an oncologist here in Las Vegas as well, just in case we will need him in the future, since our first oncologist here in Vegas no longer wants Kassidy as a patient.  We found this out the beginning of this week when Make a Wish called us to let us know the reason there had been a delay on her wish was because her first oncologist no longer claimed her as a patient and he wouldn't signed the paperwork, when he had told Ryan that even if we chose another treatment plan that he would help us with the Make a Wish.  Wow!  We will definitely never be going back to him or refer him in any way.

We got called back pretty soon after filling out all the required paperwork, which by the way we are getting pretty good at.  I can't tell you how many of those papers we have filled out in the last couple of months.  We sat in the exam room for about an hour and half and then we started to feel a little antsy. At the same time Ryan was ready to go to the front office to ask if they had forgotten us, we heard arguing in the hallway directly in front of our door.  There were some choice words exchanged by the doctor we were seeing and a staff member.  We got from the argument that he was not so happy that we were there, since he had already refused to be the onsite doctor that would work along with the Burzynski Clinic.  At that time, I told Ryan and Kass that I would give the doctor 10 minutes to come in the door and if he hadn't I would ask for my $20 copay back and walk out the door.  My patience was running thin.  Ryan after the 10 minutes stood outside the door and saw the doctor that then informed us he would be in 5 minutes.

When he walked in the door he proceeded to ask Kassidy's medical history with a bit of frustration in his tone.  That's when I chimed in and told him we were here because his staff had called us that he wanted to meet with us, but we had already found an MD here in Vegas that would oversee Kass every month for her physicals and signed the 1572 form.  That all we needed him for was to be Kass' oncologist here in Vegas just in case we would need him in the future.  He then seemed to relax and agreed that there is really no conventional treatment that works on any certain person for this type of disease and that Kass is doing well and right now its probably the best time to try something out of the box that's non toxic and see if it works. That he would like to see Kass after her MRI just to keep an eye on her.  We left the office in bettter spirits and surprised by the change of heart, but glad to have a new oncologist who will support us through this treatment.  Thank you God! Another answered prayer.

Macayos gave Kass her own name tag! :)

Later that evening we decided to go to Macayos Mexican Restaurant to take part in the Kassidy's Army fundraiser night.  My goodness, the restaurant was filled with friends, family and people supporting Kass we have never met.  It was an overwhelming site to see! We sure feel loved, THANK YOU ALL.  We tried to greet everyone at their tables to thank them and hope we did not miss any of you.  What an amazing night, so great we ran Macayos out of rice.  LOL!

Our table at dinner with great friends.

July 25, 2011

To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven.

- Johannes A. Gaertner


That is exactly how we felt this weekend, like we have touched Heaven.  What an amazing weekend we had!  Our fundraisers definitely surpassed our expectations. Between the Centennial garage sale, car wash, bake sale,Kassidy's Army Golf Tournament & Smiths booth we raised $33,000.  Just amazing! That will cover 4 months of Kassidy's treatments.


On Thursday, Smiths on N Durango allowed us to take part of their community outreach program. Kyle, Kass & I setup a booth inside Smiths to sell the Kassidy Army t-shirts & bracelets.  When we got there the firefighters were outside, identa-kid (fingerprint service for kids) & Girls Scouts.  Unfortunately we got there a little later than I wanted and we didn't get such a great spot, the first half hour nobody even gave us a look.  But I had made flyers with Kassidy's picture and a very small paragraph about her, so my friend Lisa had an idea to stand up front of the store and handout flyers and point them towards our booth.  It worked!! Many people stopped at the booth to ask Kassidy about her treatments and offer their kind words, especially from cancer survivors.  Several bought bracelets and/or t-shirts. There were many, many people that simply donated.  It seems like almost everyone knows someone who is fighting or has had to fight cancer and they were very generous.  In the four hours we were at Smiths, we were able to raise $1600.  We were very excited and want to again thank any and all that helped to make this fundraiser a success.  After the fundraiser, Jenniffer, (the Smiths manager) came by the house and donated a beautiful oil painting for our auction at the golf course.  Thank you again Jenniffer!! 

Kyle, Kass & the girls scouts in the fire engine at Smiths.

That night we went up to Centennial to help organize all the donations and help with the new donations coming in.  As we walked in thru the doors of the school, it was an overwhelming site,  donations scattered from the front of the school all the way to the back and a very tired coach Spencer & Vicky trying to sort it all.  We stayed and helped until the sun set and we could not see anymore to work, but we got a lot done to prepare for the 1st day of the sale.

Kass found a donated bed to crash at while we organized donations at the school.  

When we got home we had to stay up and make signs for the sale and since it was already to late to go to bed and have to wake up again in an hour and half to change Kassidy's medication bag, we just stayed up.  By the time we were done with changing her medication bag and reprogramming the pump it was 1:30am before we went to bed and had to wake up at 4:30am to be back to set things up for the sale.  As we approached the school, we noticed the Channel 5 News van parked in front of the school.  We were so happy to see that the media was going to cover the event.  They initially interviewed Ryan first and then they hung around till I could go back home and get Kassidy so they could ask her a couple questions.  Here is one of the videos they shot for the news:


Centennial High School hosts fundraiser for cancer victim: "Kassidy Merritt suffers from a rare form of cancer and her treatments cost $7,600 per month."

Card & Bracelet from a 5 & 6 year old boy.  Cute!

As the day went on, we would see shoppers that had watched the news and wanted to either meet Kass, buy a shirt/band, support her by shopping, car wash or just came to give a donation.  Our favorite that day was when a mother brought 2 cards and bracelet made by her sons who are 5 & 6 years old.  How cute!  Another was a mother who wanted to buy shirts and have Kassidy sign them for her and her children.  All throughout the day we experienced the true meaning of giving and good works.  Not only from the shoppers, but from all the volunteers, like the football team who stood out in the heat washing cars, National Honor Society kids, Student Council kids, Centennial High School staff, friends and family.  I hope we didn't forget anyone,  We appreciated you all!

Some of the signs the kids held up at the corner of Centennial & Durango

Kids working hard!

One of the cakes at the bake sale, great message!

Unfortunately, Kass paid a price being out there for a bit too long in the sun.  We tried to have her at the garage sale in spurts so she wouldn't miss too much, but by the night she was exhausted and couldn't quench her thirst which made her sick from drinking so much water at once.  This brought us back to her and I sitting on the bathroom floor because she felt like she was going throw up.  This made her upset and then caused what we think was a focal point seizure (spasms of the left side of her face), it only lasted a couple seconds, but it was the first time we've ever seen her do that which scared us a bit.  She finally calmed down and everything was ok.  Doctor said we just have to watch and hope it doesn't happen again or she will have to take anti-seizure medication.  Ugh!

Boulder Creek Golf Course

On Saturday, we decided that we should go to the golf tournament to meet all the golfers and be part of this event.  Kass was really sad that she couldn't be at the garage sale as well, but unfortunately we all can't be cloned just yet.  When we got to Boulder Creek golf course, the golfers were being given their rules, Ryan said a couple words to everyone, and Kass was introduced which caused a standing ovation from all the golfers.  And they were off! 

Kass and her personal golf cart for the tournament!

Jacob, Nick & Kyle volunteering!

Kass was given her own golf cart, which she shared with our friend Don Laczi, our friend who's an amazing sports photographer.  He took some great pictures of the tournament.  Don went around with Kass and took pictures with each of the foursomes that were playing that day.  After the golfers were done, they were treated to a very good dunch (lunch/dinner).  Sam Myers, Kirk Hartle, Ryan & I said a couple words to thank everyone for coming.  Of course, I couldn't say my words without tearing up which brought some to tears.  We raffled and auctioned some great prizes and all the prize money won from each of the foursomes was donated back to Kassidy's cause.  Another amazing act of kindness!  

Our Xtreme Softball Family & are amazing Tournament Directors!

It was so great to also see our Xtreme Sofball team family out there supporting.  The parents & girls volunteered at some of the holes to keep track of the different competitions,register all the golfers, sell raffle tickets and sell mulligans tickets. All in all, we had 96 golfers participate, which for only 5 weeks planning the event, we think it was an awesome turnout.  They golfed and volunteered on a pretty hot day!  Thank you, because I know many just did it for the cause.  We hope to make this an annual event and it will be called the Kassidy's Army Golf Tournament, we just hope to be able to do it in the spring when it's not so hot outside.

Kass and her new best friend at the golf tournament.  Sweetest girl ever!

Cox Family & Kass one of the many foursomes who competed.

Dave Dreibelbis group

As we got home that evening, we all were in bed by 7pm, we really even didn't have the energy to do anything on Sunday.  But we are now rested up and ready to tackle this week's goals.  We hope to see you all at Macayos on Tuesday, Dance Party at the Purcel's on Friday, and Buffalo Wild Wings on Saturday.  All info is on the left side! Make sure you take the flyer!

Thank you all for your love & support!

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.
-- Melody Beattie

July 19, 2011

Two months today and it feels like a year's gone by! But oh how different we feel today compared to that dreaded day.  We can't stress how much we are enjoying just being home and are watching Kass improve a bit and handle treatments better every day. NO headaches since July 6th!

We are currently trying to get organized with a schedule with Kassidy's treatments, blood draws, change of medication bags, and pills.  We start changing her medication bag 3 times a day starting tomorrow because her dose has increased enough that 2 bags don't do the trick and one bag only has 1000ml.  First bags are the hardest to prepare and take us a good 30 minutes, the next 2 other changes take us about 15 minutes.  She usually starts her first dose around 10am the next bag change needs to happen between 3:30 and 6pm and then her last bag change around midnight.  As her dose increases we will be going into 1am in the morning.  It will be like getting up with an infant again.  Ha! But she's sure worth it.  She didn't let us sleep through the night till she was 2 and she will not let me sleep again for the next 2 years.

Sunday was my birthday and we had a great time hanging out together as a family and later on with friends.  We got to be part of a flash freeze mob at Fashion Show Mall with the whole family and friends.  Flash Freeze Mob is a random group of strangers that meet at a random place to strike a pose and freeze for a certain amount of time given a queue and then go on with their day like nothings happened.  A fun way to liven up a public place.  We were invited through a friend and we thought "why not, it will be fun!"

Kass on the left in her frozen pose.

Monday, was kinda an up and down day for Kassidy.  After her first dose in the morning she was not feeling great at all, she said she felt weird.  She layed down in her bed so I decided to stay in bed with her as well until she felt better.  Later that afternoon she decided she wanted to go play tennis with a couple friends.  Feeling a bit apprehensive, Ryan went with her and watched her play and practice.  She did great even with her backpack on her back that carries her meds.  A bit rusty, but all in all did great considering everything she's been through. Today she's a bit sore, but it's probably from not using those muscles in awhile.

We want her to live as normal of life as she can even while going through treatment.  Letting her do things she loves to do is important to us and her.  She absolutely loves sports and is a very active person.  Being home all the time doing nothing, is what she calls "boring".

Kass meeting up with her friends for a little tennis.

I love that face, it's her determination face.

My camelback works well for when she's doing sports.  We will make it work.

 **** Reminder about this week****
Friday & Saturday - Garage Sale, Car Wash, & Bake Sale - Centennial High School
YOU CAN DROP YOUR DONATIONS THIS thursday AT CENTENNIAL FROM 5 TO 8PM

Saturday - Golf Tournament & Auction

See left sidebar for flyers.

July 15, 2011

We are home at last!!!!! We can't tell you how amazing it felt to see the Las Vegas city lights arise as we reached the top of the hill coming out of Boulder City. Those of you who have never experienced this, it's a sight to see.  As we were going through the Hoover Dam area you can kinda see the gleam of the city, especially the Luxor beam that reflects from the clouds in the sky and as you reach the top of the hill by the Railroad Pass Casino after Boulder City, you can see the most grandiose amount of lights in all colors that extend for miles.  Just breath taking!

I didn't take this pic, but just wanted to give you an idea.  Home sweet home!

Kass and I felt like we have been away from home for far too long.  Last night we arrived right around midnight.  We decided we would drive straight through for 17 hours just to get home once and for all.  We left Houston on Wednesday around 4pm and drove to Ozona, Texas (small little town in the middle of nowhere), it took us almost 6 hours. Our plan was to stop in Tucson, Az the next night to rest and stay with friends and then continue on Friday, but we decided we just wanted to be home.  We really have missed it!  The quote "there's no place like home" was truly the case for us this trip.

Check out our trunk! Doesn't it look like pharmacy exploded in it?

On Wednesday, before we left, was a crazy day.  We did our normal routine at the clinic first, but after that we had to meet with the checkout nurse, medical supply lady, pick up prescriptions, pay our balance and the next month's management fee, meet with the shipping clerk who will be shipping our medicine, pack our belongings, and last but not least, say goodbye to the nurses.  Needless to say, Kass was wore out by the time we did all this and she was so tired we didn't have time to say our goodbyes to Dr. Weaver, Kassidy main doctor at the Clinic.  :(  We sure will miss them all.  They were all very nice and patient with us.  They are all doing amazing work at this clinic and we appreciate everything they taught us and did for us.

Nurse Laura, Kass, Nurse Janna(our main nurse), & new nurse.

I will miss seeing this sign every morning!

Those of you that know someone with cancer and want to learn about the amazing work that Dr. Burzynski and his doctors are doing, here is the link for his movie through Amazon, it costs $3 to rent for 7 days. It's called "Cancer is Serious Business" Please watch, controversial or not, this doctor is saving lives.

http://www.amazon.com/Burzynski-Movie-Cancer-Serious-Business/dp/B004LKDIX6/ref=ed_oe_vdl

As we headed home on Thursday morning we received a call from the clinic stating that the doctor from Vegas who had agreed to oversee Kass had changed his mind.  He had sent a written letter to Dr. Weaver stating that he wanted his name taken off all the paperwork.  The nurse then stated that I would have to shut Kassidy's pump off till we found another doctor that would work with us and she would stop receiving treatments until the matter was resolved. We were devastated!

Per FDA rules one cannot leave the clinic without having prior authorization or this form called a 1572 that states a doctor agrees to do month physical exams on the patient, THAT's IT, a monthly physical. Ugh!  Immediately my body tensed up and I started to feel the stress creep up just like I had the previous weeks. We had worked so hard on getting this doctor to agree with and us and just like that, a change of heart.  I immediately called the doctor that had seen Kass right before we left Vegas, he's the one that was referred to us about helping us to getting Kass on a diet that would help her withstand the treatments better.  He immediately called back and agreed to sign whatever we needed.  Thank you Lord! Unfortunately, we would have to wait till the next day until his staff got everything done.

We do feel things happen for a reason.  Stopping the treatment for the day allowed us to drive without stopping so much for Kass to go to the bathroom and get home quicker.  I guess sometimes our prayers are not answered exactly the way we want to for a reason. Lesson learned!

On our way home, we decided to finally get a picture with the wonderful Arizona cacti that remind us of the old Road Runner cartoons. Beep Beep! We missed doing this on the way to Houston, thinking we would see them again on our trip there.  I made Ryan stop suddenly when I saw the perfect spot to stop at.  We took the picture at a perfect time, it was just dusk and the colors in the sky were gorgeous.  Arizona has some of the most amazing sunsets; last March when I was there running the Ragnar Relay, my team and I got to experience one of these amazing sunsets for the first time.  Another sight to see!  These days we marvel in the small things.

Beautiful AZ sunset!

Kass & I with the coolest cacti ever.

Cacti

July 12, 2011

Everyday I'm amazed at people's generosity.  Our family cannot get over how many have tried to help us in so many ways these last few weeks.  Today Kass & I went to lunch with a young lady named Ana from here in Houston, who we met for the first time.  Ana contacted us about a week ago, she had heard from a friend that we might be needing help.  Without knowing us, she decided she would do a fundraiser for Kassidy.  Her family is from the South Pacific and y'all know they can cook.  So her family and her sold $715.00 worth of plates of food for us.  Amazing! We are deeply touch by their family's kindness.

Ana (a warrior in Kassidy's Army) & Kassidy

Another great picture I received, was this week was picture of my friends daughters who decided to spend a little of their summer time doing a lemonade stand to raise money for Kass.  Bless their hearts!  This picture melts my heart.

Lemonade anyone?

Kass has a good couple of days.  On Saturday night we got a call from the front desk telling us she had received a package.  Long and behold it was a packaged addressed to her from Ron Pope.  Those who do not know who he is, he's one of the singers on Kassidy's playlist that you listen to when you go to her blog.  She absolutely loves his music and especially his song called "A drop in the Ocean".  What a great surprise for her.  She was so happy and has been talking about him non stop.  Thank you Ron, for making our daughter feel special.

Some of the items Ron Pope, the singer sent Kassidy! She loved it.

Then on Monday another package.  This one from my cousin Ari from Salt Lake City.  It was a build a bear bunny all decked out in softball clothing wearing a t-shirt with "Kassidy's Army" on it and on the back "Join the Fight".  She absolutely loved it.  Thank you Ari! Her husband designed these logos that we will use in the future for some more t-shirts to sell.

Thank you Nani, Josimar & Big G.

On Sunday we were feeling a bit of cabin fever.  So Kass & I made the trek down to Galveston with the Olmos family.  We went to Moody Gardens Aquarium and then to dinner.  We had a great time and it was so nice to do something different for a change.

Shark Cage

Posing with Migdalia Olmos

Posing with Javier Olmos

I'm happy to report that Kassidy has not had headaches at all for the last 5 days. Yes!  She's been doing really well with the increase of her dose everyday.  The only differences I've noticed is she's drinking a lot more water.  The medicine contains a lot of sodium and the side effect is extreme thirst.  She has been experiencing interrupted sleep because she has to get up so many times a night to got to the bathroom.  I bet this will make for a fun way home.
The doctor had me start her on 2mg of decadron (steroid) twice a day on Sunday since she also has been experiencing a bit more nausea.  They feel that if the tumor is breaking down it will cause some swelling in the brain.  We want to avoid this so she doesn't have ill effects like seizures, extreme vomiting and headaches from the swelling.  I had been holding off because with decadron unfortunately come other side effects as well.  It's like we have to take the good with the bad, but we will watch these closely and I will hunt for maybe something more natural as a anti-inflammatory.

The great news is that we get to come home either tomorrow or Thursday morning!  We are so excited!!!!  Tonight Ryan flies into Houston so he can help us pack up and drive us home.  Kass cannot wait to be in her own bed and get to play with her bunny Lala and her parakeet Max.  Not looking forward to the long drive, but we will survive.

We have had such a great response from the GARAGE SALE that it's gotten so big with donations that it had to be moved to Centennial High School parking lot.  The sale will include a CAR WASH and even BAKE SALE as well and it will be held July 22-23 from 8am to 3pm.
Those of you that still would like to donate items or volunteer any of those days, please call Vicki Hall at    702-339-8496 or Coach Spencer at 702-622-5801.

On the GOLF TOURNAMENT & AUCTION there are only a couple spots open.  Please help us fill them!!! Email us at ryanandmass@aol.com and I can send you the application form or contact Sam Myers at 702-696-8535 or Kirk Hartle at 702-526-9321 for more information as well.

RIP Dylan Shaw

Today I write with heavy heart as a boy who has a brain stem tumor called a diffused pontine glioma (DIPG) dies this morning.  I've been following this boy's blog ever since my sister in law, Holly, told me about this boy about a month ago or so.  He was so heavy on my mind yesterday that I had called my sister in law to get his mom's number so I could speak with his mom.  When she gave me her phone number she told me that the mom was more apt on answering texts.  So I texted her letting her know that I had been thinking about Dylan and that I would love to talk to her if she had time.  Today, as Kassidy and I were heading back from the clinic I got a text from Holly saying that Dylan had passed away this morning.  I hope God gives his family strength through these hard times and glad that Dylan is no longer in pain and free!  Rest in peace Dylan.

www.dylandshaw.blogspot.com

July 9, 2011

Yesterday, Day 8th I was on cloud 9! We received the greatest news ever.  Kassidy has been having her blood drawn every day to make sure we get her levels of potassium to a safe level.  Well, on today's test, her uric acid showed a 7.7. Your probably going, so what does that mean? Well, Dr Weaver informed us that most brain tumor patients here at Burzysnki, start showing uric acid increases usually when the tumor starts to breakdown.  I wanted to scream to the world, THANK YOU GOD! I couldn't contain my excitement and at the same time saying a silent prayer and hoping that this is exactly what it means. We do have to watch her level of uric acid does not go over 10, because then she can develop gout, but even if it does, she will be given something to control it.

Uric Acid at 7.7! Yipee!

Now, we have been working hard on getting her levels of potassium higher.  She is now taking 2 mama jamma potassium pills 4 times a day.  She's never been one to have trouble with pills, but the first morning she was taken one we were having breakfast and I hear her gag.  Out came the pill! The pill is big, so I started to cut it in half, she says it still kinda hard, but she gets it done.  Today at our appointment at the clinic, one of the other patients suggested we put the pill in juice and let it dissolve and then she can drink it.  Duh! Why didn't we think of that.

The mama jamma potassium pill!

Today I found an error on the pump, she wasn't getting enough of bag 2.  During weekends, the clinic works on a skeleton crew and just sees patients like us learning.  They do everything for you, but I was looking at her dose sheet and looking at the delay of the pump and it just didn't make sense for what I had learn the previous week.  I had to call the clinic and they told me to just reprogram the pump and shut it off after her last dose tomorrow at 6am.  I'm feeling pretty confident with a lot of the procedures now.  Next week all I have to learn is how to change a bag of medication during mid cycle since her doses are going up, bag 1 only holds 1000 ml and her doses will be more by the time it administers 6 times.  Other than that, I've learned everything they teach and all we need is the doctor from Vegas to sign the paper saying he will oversee Kass while we are at home.  After this is done, we can go home!!!!!!! Yes!!!! Kass & I are ecstatic about that.

Kass has been handling the medicine pretty well these last 3 days she has had no headaches.  Has had some small nauseas, but all in all feeling pretty good.  We have noticed that after her first infusion of the day with her upped dose, she feels pretty tired and has to take a nap.  In the evening, she has more energy and in the morning she has a bit of hard time waking cause her dose is usually finishing when I'm trying to wake her around 7:30am.  Her body seems to be getting use to the medicine a little more each day.

It's been great hearing from y'all (Texas style).  I have attached a couple pictures of peeps showing Kassidy Army pride.

Savanna with UCLA softball head coach Perez

Lopez boys posing, what they are great at.

Sarah and Coach Spencer from Centennial High School sofball.

July 7, 2011

Javier & Ramses and their support group for their goal of 42 marathons in 42 days.

Holding Kassidy's banner before their 40th race which they dedicated to her.

Panama people, if you would like to buy these t-shirts to support Kassidy please call
Gente de Panama, si quieren comprar estas camisetas para apoyar a Kassidy por favor llamar a
To make the picture bigger, just double click the image
Alcibiades Urriola at (507) 6747 3726

This morning at the Clinic Kass was really tired she crashed while waiting for the dietician to see us.  

Last night she said she felt good so she worked out at an easy pace for a 45 minutes.

Day 7! The end of the first week of hope. I'm happy to report that we are getting the hang of everything quite fast.  Repetition of the procedures have definitely helped.  Kass & I have recorded the nurses with our camcorder doing each of the steps so we can have a visual reference on how to do everything ourselves.  I still get a little nervous drawing her blood and cleaning the area of where the catheter comes out of her chest, but I'm getting better every day.

Our days at the clinic start around 9am, we are there usually almost to 11am and noon sometimes learning every step this is every single day.  Sometimes we do have to go back for seminars at 5pm, but not very often.  The day starts off with checking vitals, drawing blood (lab work), nurse assessment, doctor appointment, Tubing change, catheter tip change, preparing the medication bags, programming the pump, dressing change on where the catheter comes out of her chest and sometimes change the batteries on the pump.  What a mouthful isn't it! Needless to say by the time noon comes around, her and I just want to go back to the hotel, eat lunch and take a nap.  Kass is usually pretty tired after this and sleeps a couple hours; probably because her dose is increased every day at that time.

Her dose comes in two bags as you saw in a previous picture.  Bag 1 contains the A10 antineoplaston which breaks up the tumor and Bag 2 contains the AS2-1 antineoplaston that destroys the tumor.  These two bags are then attached to a small pump that administers the doses around the clock.  Her doses are increased every single day unless the doctor sees a problem.  But she is attached to this device all day and night long.  She must carry it in a backpack, it's her new best friend.  By the way, she named her pump and it's name is Gertrude, Getie for short! :)

We did receive great news today, we were told that if we can get Kassidy's potasssium deficiency under control and we can get an ok from a doctor that is going to oversee Kass in Las Vegas, we can go home.  Yipeeeeeeeeeee!  So today we met with the dietician to tweak a couple things in her diet and the doctor prescribed some potassium supplements and we hope that does the trick.  Kass really wants to be home for the garage sale and for the golf tournament that is being done in her honor.  She wants to personally thank those who are participating in these events and have been part of Kassidy's Army thus far.

We also have been touched by two young men, Javier Gonzalez and Ramses Cano, two ultra marathoners that have dedicated their last two marathons to Kassidy.  What they will be accomplishing today is no easy task, their last marathon run of #42 in 42 days.  Yesterday their goal was to go sub 4 hours in their marathon and they ended up completing #41 at a time of 3:46, an amazing time, especially since they have been running 40 others continuously the days before.  Those of us who are runners know what an accomplishment this is.  They told Kassidy that they hoped that the pain they endured while running these, would take a little less of what Kass will have to endure in days to come.  Their motivation was Kassidy.  Very touching and brought tears to our eyes! They made a little video for her to give her to lift her spirits, here it is for those of you that know spanish, you can click on this link to watch it:

http://youtu.be/kG9_3z5jWFk

July 5, 2011

We would like to wish good luck to Javier Gonzalez and Ramses Cano for dedicating today's 40th marathon run to Kassidy.  These two men goal is to run 42 marathons in 42 days for benefit of the Pura Voluntad Foundation.  A non-profit organization dedicated to promote a healthy lifestyle, hard work, dedication as means to achieving any goal. Here is their facebook page for those who are curious about their feat:  http://www.facebook.com/profile.php?id=520120265#!/pages/42-x-42/153336928069112
We have always been amazed by the power of the mind and body.  It's true power lies beneath all of us, we just somehow have to dig deep and find it.  Today we will be thinking  of these two men all day as they go out  on their quest in achieving this great goal for such a great cause.  We cheer them on from afar and thank them from deep within our hearts for what they are doing for Kassidy.  THANK YOU!
At 5 p.m. today they will be saying a few words and dedicating this run.  Those who live in Panama City, Panama and would like to run, walk or just cheer on Javier & Ramses please call or email my friend:
Alcibiades Urriola M.B.A.
alurriola@hotmail.com
(507) 6747-3726

July 4, 2011

                    ˜˜”*°•.¸☆ ★ ☆¸.•°*”˜˜”*°•.¸☆

                      ╔╗╔╦══╦═╦═╦╗╔╗ ★ ★ ★

                      ║╚╝║══║═║═║╚╝║ ☆¸.•°*”˜˜”*°•.¸☆

                      ║╔╗║╔╗║╔╣╔╩╗╔╝ ★ 4th of July!!!!!! ☆ 2011

                      ╚╝╚╩╝╚╩╝╚╝═╚╝ ♥￥☆★☆★☆￥♥ ★☆

from

Kassidy & I

                       Bag 1 & Bag 2 connected to the pump that administer the 6 doses every 4 hours.


On Sunday, we took Ryan and Kyle to the airport so they could go back to Vegas.  We sure miss them already! But Ryan had to get back to work and Kyle has to continue his cross country training.  He has to report to Boise State in just a little bit over a month.  Ugh! I don't even want to think about that right now, it's just another jab at my heart every time I think about it.
Well, that same day Kass & I had a really long wait at the clinic since all the patients came all the same time for their treatment that day. Each new patient has to come every single day like us to learn the steps for at least two to three weeks.  The staff is very friendly and patient and they feel like repetition of the procedures are really the best way to learn. I also don't mind waiting since I like watching the nurses work on different patients and try to learn that way as well.
There are patients of all ages from all over the United States that are in the same room as us every morning.  Each of them with a story of their own, two of them battling breast cancer which one of them has  been battling for 6 years and this is her last chance, others brain tumors, and lymphomas.  When I watch them I can't help but feel admiration for their courage and perseverance.  On the walls of the rooms are lined with collages of kids and adults that have been at Burzysnki and beat their cancer.  What joy it brings me to see their pictures that tell their stories of their successful battles.  More than anything,I long for the day to see Kassidy's story someday displayed in these walls as well.
Today went a lot smoother and I got to unhook Kass from her catheter this morning for the first time.  Boy was I nervous!  But got it done and she was able to take a shower by taping the port area with some plastic wrap around it.  At the clinic we were in and out in less than an hour and half and came back right away cause Kass was exhausted after.  She slept for about 5 hours.  When she woke she was bored so we decided that we would go see a movie at the CityCentre Moxie Studio Grill, a movie theater/restaurant/bar.  What a concept!  Her and I thought it was pretty cool, but we did not eat there since these days Kass is on a pretty strict diet.  
Kass diet does not allow her to go over 2000 mg of sodium a day.  The ANP (antineoplaston) has a lot of sodium in it so she has to watch her intake of sodium so she doesn't damage her liver.  That said, almost all restaurant foods have an exorbitant amount of sodium in their foods. I had to download an app on my phone that shows the nutritional values of each restaurant, it was eye opening how much salt we eat.  Also, we are fortunate to have all kinds of health food stores around the area and we bought almost all organic for her and foods high in potassium.  I want to make sure her body stays strong through the treatments so we also walk every night.
Tonight after the movie got out it was great cause we had perfect timing.  As we got to the bottom of the exit escalators the fireworks show began.  We stood there and watch the whole show which was awesome, they had a band and show at the same time.  We then walked back to the hotel.  Good night all, tomorrow is a new day!