June 30, 2011

A day at the NASA Space Center to take Kass mind off everything.

We have been anxiously waiting to see if Kass was going to be accepted into the clinical trial program at the Burzynski Clinic by the FDA.  We were nervous because there was a possibility she was not going to be accepted because she had not failed radiation or chemo treatments first.  Well, today while we were out at the NASA Space Center spending a little quality time together we got a call saying that she was accepted.  Wohoo! We were so excited! Prayers were heard!
Early tomorrow morning she will have a small surgery to put in her port/catherer in her chest and 4 sets of MRIs.  If we are done by 3pm, then the doctor would like to start her treatment immediately after at the clinic. They will infuse her first dose.
We've never been so happy in our lives since the day we laid eyes on our beautiful daughter when she was born. Tomorrow will be day ONE of a long battle that we will fight together and our start of hope.

"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow."

- Orison Swett Marden


PS. Want to deeply thank Ron Kantowski and Jason Bean for doing an amazing job telling Kassidy's story.  Here is the link for those who haven't seen the article.  It made front page of the Las Vegas Review Journal:


http://www.lvrj.com/sports/in-a-fight-for-her-life-she-s-still-all-smiles-124696384.html

Ways you Can Help!

Good morning everyone! Just wanted to let you know of ways you can help:


* Now - Kassidy's Army T-Shirts and Arm Bands for Sale at One Stop Convenience Fireworks Booth till the 4th of July at 7951 N Cimarron Road or contact coach Spencer at 622-5801.


* Ongoing - Our friend Don Laczi makes amazing sports posters.  He is donating 100% of the proceeds of those who order a poster.  Please check out his site blog and site: http://cyclazzi.blogspot.com/2011/06/onehundredpercent.html


* July 22nd thru July 24th - Garage Sale for Kassidy - those who would like to donate items, volunteer for the sale, or just come and shop.   Please contact Vicki Hall at 702-339-8496 or email at vikihall@cox.net.

* July 23rd - Golf Tournament & Silent Auction - those who would like to donate services or items for silent auction or just want to participate.  Please contact Sam Myers at 702-696.8535 or email him at sambm@ahern.com.  Golf Tournament will be at Boulder Creek Golf Course.


* October 1st - Livestrong Ride Las Vegas - Kassidy will be this year's face of Livestrong - to register for the ride and to donate to Kassidy please go to:  http://www.lvcancerfoundation.org    Make sure if you donate to Kassidy to click on her picture. 


* Future - Ebay Auction - My cousin is gathering unique items to do auction on ebay.  To donate items for auction and more information, please contact Josimar Farias at 801-232-5696 or email jampabr@hotmail.com or Ariadne Ugarte at 801-706-9608 or email topita@hotmail.com.

Thank you for your love and support! If you would like to be part of Kassidy's Army and take on a fundraiser activity or just have ideas, please email us: ryanandmass@aol.com


If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.  When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally:  give up, or fight like hell.  ~Lance Armstrong

June 28, 2011

Burzynski Clinic

Kass with Dr. Burzysnki

Our day's itinerary that took almost 7 hours

Consultation day! We rose early in anticipation for the big day since we had a 45 minute drive ahead of us from where we are currently staying with friends that I haven't seen since I was a child when I grew up in Panama.  Completely thankful for their hospitality and generosity!
As we drove up to the clinic and parked we all nervously looked at each other with scared, but inquisitive looks in our eyes.  My hands were shaking as I grabbed all of Kassidy's medical records and notes I've kept since the beginning of all this and we all proceeded to go into the big glass building which we were met by a doorman with an accent and he welcomed us to the clinic.
We were a couple minutes early so we were instructed by a very polite lady to wait in the waiting room and she handed us an itinerary of what the consultation would entail and explained a little bit about waiting times, procedures, and told us about the cafeteria on premises.
The appointment started 11:00am sharp and we walked out at 4:45pm.  Long day! They first took Kassidy's vitals, which were all great.  Then Dr. Szymkowski, interviewed us and discussed Kassidy's medical history to make sure all the information she had was accurate so she could discuss Kassidy's case with Dr. Burzynski before he came in the room to discuss a plan of action.  After what seemed an eternity, Dr. Burzynski, Dr. Szymkowski, and Dr. Weaver came in and introduce themselves to all of us and started to explain a little more about the two types of treatments. How targeted therapy would target 3 genes and the clinical trial could target up to 100 genes.  Her biopsy slides would be sent to a laboratory in Phoenix, AZ for testing to see what type of genetic makeup her tumor is made of.  They did this so they can isolate which genes are causing the tumors and individualize her treatment more.   They would like to start her on the clinical trial antineoplaston and in the future also include the targeted therapy to speed up the process of reducing the tumor.  Dr. Burzynski did say that since Kass's tumor is slow growing that it would take 1 1/2 to 2 years for treatment, which is a long time for Kass.  She was hoping it would only take a couple of months so she could get back to a normal life.
She will have to have another MRI, small surgery to install a port, and wait for final approval from the FDA to make an exception since she has not failed radiation or chemo therapy which is one of their requirements.  The doctors are hoping since the tumor is so rare they will make an exception.  Kass and I will be required to stay here for 3 weeks to learn the process and Kassidy will have to go to therapy everyday including Saturdays and Sundays while we are here.   Infusion will take about 2 hours everyday and I will be taught how to administer and take care of the port.  She will be closely evaluated every week to watch how she reacts to different doses.
After we discussed treatment we met with a financial counselor to get an idea of what it all would cost.  Can you say WOW! If we are accepted into the clinical trial all medication will be free, but a cost of management fee and supplies of $7,600 a month for the duration of treatment.  She did explain that they would try to get insurance to pay some costs, but not to count on it.
Kass then had some lab tests done and blood samples drawn for testing and all of this followed by a physical which she passed except for slight of bilateral nerve test. This concluded the consultation and we were told we would know in a few days if Kassidy is accepted.
Meanwhile we will hope! One day at a time......

June 26, 2011

First all, I want to thank each one of you for your love and support! THANK YOU, is not even enough for what some of you have done.  We want to especially thank Dave for hosting a poker tournament and to our Wyoming family for doing the garage sale; both events were very successful. We can't forget all of those who have donated, our deepest gratitude.
On Friday, we finally got the chance to meet with two reporters from the Review Journal.  They spent 5 hours with us interviewing our family and then each of us individually.  It was especially hard when we were being interviewed separately because we had to relive some of the difficult moments we've been through in the last month. We all know this is for Kassidy and that is the only reason we do it.  Kassidy, especially does not like all the fuss about her.  We are not the type of family to really ask for help, but this is about our daughter's chance at life and we will do what we have to.
We left home on Saturday afternoon, but oh how hard it was for all of us.  Our mixed emotions about what is in store, is hard to bear sometimes. But we were able to stay with good friends in Tucson, AZ Saturday night that we have not seen in a couple of years.  Thank you so much Striblings, it was so good to see you guys and share a little time together. We continued our trek today and we are now in Ozona, Texas. Wow, Texas is big! We are taking our time and not really stressing ourselves out.  We are excited about tomorrow since we will stop in San Antonio to sightsee and finally arrive in Houston.
Tuesday morning is our appointment at the Burzynski Clinic.  We are all anxious, but scared at the same time.  That day we hope to find out if Kassidy's qualifies for the antineoplaston treatment and if she doesn't what does the personalized treatment exactly entails.  We also hope to find out if she will need a port to administer her medicines which needs to be put in surgically, estimated time of treatment, medicines that will be administer, etc  The appointment should take 3 to 4 hours.
At this time, we are not sure of how long Kass and I will be there or even where we will stay.  But we are taking a step at a time.  Have a couple friends in Houston that are willing to help with plans and we are excited about that.
Please keep us in your prayers, we are very nervous about Tuesday.  God bless all!

June 24, 2011

Well, Kass gave us a huge scare on Wednesday! We were getting ready for the interview with the Review Journal who was coming to do a story for the local newspaper and she came in our room crying.  She said, "Mom, I just got out of the shower and I heard something in my skull crack and now I can't really move my head; every time I move it hurts!" I panicked because of the look of pure fear in her face.  My heart skipped a few beats and all I could do was ask God, "please help us!" I made her sit down and explain to me exactly what had happened, I wanted to make sure she had not slipped in the tub since poor balance at times, is one of her symptoms. She proceeded to tell me that she had not slipped, just that she had heard a crack when she was getting dress and it scared her.  I immediately called the neurosurgeon's office and spoke to her assistant who helped me asses Kassidy over the phone.  The assistant said that as long as she didn't have any trouble swallowing, breathing, fever, and could at least move her head some, to keep her home.  She instructed me to give her one of her pain pills she had leftover from her surgery and that she would call back in an hour to check on her.  After an hour, Kass was able to move her head without hurting, but I immediately made an appointment to go see the doctor and of course she couldn't see Kass that same day since she had scheduled surgeries all day, so we had to make it for Thursday afternoon.  Meanwhile, we had to keep a close watch on her and ended up canceling our interview.
Thursday, Kass had two appointments, one with the doctor that was referred to us by Tyler's parents, the boy from Centennial who had a brain tumor 3 years ago.  We were impressed with this doctor because he taught Kassidy the importance of eating and drinking the right things while she's in treatment so her body is able to recover faster.  He taught her how to tell what's good for her and what's not with a very simple step that she was pretty impressed with.
We also went to see the neurosurgeon that afternoon which told Kassidy that everything seems to be normal.  She did explain that Kassidy's skull had been sutured back up and it still has not healed completely so she needs to be careful with the area. That it's all part of the healing process.  Ryan and I looked at each other and thought "still kinda scary".  The doctor also said that she could do anything if she feels good enough to do, just no contact sports. So, what does she want to do, go to Xtreme's softball practice.
That evening I took her to practice and she got to do a couple swings for batting practice.  NO sliding, catching or running bases, but she got to be a part of practice which she loved.  Also, after practice all the Xtreme girls had a sleepover which Kassidy said she wanted to go to. Wow, didn't realize how hard it was going to be to let her do that.  We felt like she was going to her first ever sleepover. But later on that evening, she said she was having a blast.
Today, I received great news that the site is up for those who want to register for the Livestrong ride on October 1st here in Las Vegas and those who want donate to Kassidy's fundraising page.  Christina and Lisa worked very hard on putting the page together in very little time so we could get the ball rolling.  All of the funds collected through the link with Kassidy's picture on that page will go to a fund solely for Kassidy.  We are extremely elated that they have given us the opportunity for Kass to be the face of this years Livestrong ride.  What an honor! Like I said before, Ryan and I have riden this ride two years in a row now in honor and memory of other friends and family.   Never in our wildest dreams did we ever think that someday we would be riding for our daughter's life!  So please help honor those who are battling or have lost the battle to cancer through this ride.  We would love to see you all out there on October 1st.  Livestrong!
http://www.lvcancerfoundation.org/

June 22, 2011

Our family after Kyle's HS graduation!

Kass proud of her brother's accomplishments and feeling pretty good all day, we thank God for that.

Well, it's been a busy couple of days.  On Monday, we met with the Nevada Childhood Cancer Foundation to talk to a social worker about Kassidy's possibilites of having to go on homebound, a program for kids that ill and tutored at home.  Our problem is that they not cover (AP) Advanced Placement or Honors classes which Kassidy is in at her highschool.  Granted this would be for the following year, but we want to make sure it's in place if we need it for next year school year.  We also contacted a group here in Vegas called the Candlelighters, this organization also has a couple other resources and the best one a teen program where teens in Kassidy's situation meet once a month for activities.  I think this will be fun for her to meet others.  That same night we spoke to the parent liason for Pediatric Tumor Foundation and she is making calls to see what other resources she can dig up for us that may be able to help us.
Unfortunately, most of these resources do not approve of the course of treament we have chosen for Kassidy, because it's not FDA approved.  Most of them will not even look at us because of that same reason.  The Ronald McDonald house in Houston, TX won't even let us stay there because we are going to the Burzysnki Clinic. Our oncologist does not even want to refer the Burzynski Clinic to our insurance company so we can start the battling process with the insurance.  His assistant called us and told us that the doctor cannot refer because he doesn't believe in the treatment and will not endorse the program.  So we cannot even start the process of fighting with the insurance if not one doctor is behind us. So frustrating! But we are sticking to our guns and we will find a way.
This doesn't even top it all! Also on Monday, Ryan went to deposit a couple checks we had received for Kassidy and because they were made out to Kassidy Merritt Benefit Fund they would not let us deposit them.  Since we are not a non profit organization we cannot be named a Fund so we have to be named Kassidy Merritt Donations.  Silly I know! Her name is on the dang check! Also, according to our attorney it would be very costly to setup up a non-profit organization and would take over a year to do.  By the end of Monday's day, Ryan and I felt defeated and ready to have a panic attack.  We felt like  everywhere we turn were hitting a brick wall that day!
Needless to say, on Tuesday we decided to take the day off this craziness and enjoy Kyle's graduation day.   He graduated with High Honors, Advanced Honor Diploma, Centennial Medallion, 13 different academic scholarships and 2 athletic scholarships.  We are very proud of him and cannot wait to see him compete in Cross Country and Track and Field at Boise State.  But it was very hard to see one of children embark on the rest of his life while the other one, will begin to fight for hers.  But we enjoyed the day with Ryan's parents who drove all the way from Wyoming to come see Kyle graduate and friends who were able to make it to the ceremony. We didn't really answered emails, phone calls, or some texts and just celebrated this milestone in Kyle's life.
We did receive some amazing news yesterday from one of our dear friends, Lisa Caterbone.  Lisa is the founder of Biking Las Vegas, an organization that has helped us learn about bicycle safety and we have shared many bike rides for causes as well as just for fun.  She told us that Kassidy will be the face of this years LiveStrong ride here in Vegas that will be held, October 1st.  The Las Vegas Cancer foundation will setup a page that will run concurrently with this year's ride where all donations made through this page will be all in Kassidy's honor. Wow, we were so elated with the news.  More details coming soon on the page!
Thanks again to all those who have forwarded Kassidy's story and have taken on ways to help us. We appreciate anything you can do!

June 19, 2011

Kass hanging at Megan's graduation party while she felt well. It only lasted an hour, but it was nice to see her smile.

Our baby ended up on our bed since she wasn't feeling well, a california king is just not big enough for all 3 of us.

Happy Father's Day daddy! Today we celebrated you!

June 19, 2011, an exact month since our lives were changed forever in an afternoon when we were told OUR little girl had a brain tumor.  Words that a parent never wants to hear! Every morning we wake we wish we could wake up from this nightmare.  Getting up and facing everyday is hard enough, but we all unwillingly get up and put our best foot forward.  We have one goal in mind and that is to find a way!!!!!
This weekend has been a great start, we have raised an amazing $18,000 so far today! Unbelievable!!! Thanks to all of your help, through Kassidy's army, you all have made this possible.  We can't tell you how grateful we are, I know I keep saying this, but we truly are.  That deep pit in our stomachs we feel most days are now filled with joy and hope that this is possible.
We are more than half way there to our first goal of $30,000 JUST to start treatment; this like I said before, this figure does not include the monthly treatment costs and it's a small part from the whole picture, but as you can all see we know it's possible.  We have achieved this without even the events that are being planned or cookbooks, bracelets, garage sales etc that have not even been held yet.
One of the most touching acts of kindness we experienced this weekend was from our old neighbor, Sam Hart.  Sam is a 20 year old college student whose 21st birthday is soon.  This selfless and giving young lady decided to make an event on facebook and forfeit all her 21st birthday gifts and have everyone donate towards Kassidy's efforts instead.  Thank you Sam, we love you! Here is a link to her event for those who want to read and help: http://www.facebook.com/event.php?eid=131438193601909

We have a ways to go, but we know in our hearts it can be achieved.  We welcome all your ideas and love to hear them. Here are a couple of events already in the works right now that you may want to be part of:

*** Centennial Softball Vicki Hall is planning a Garage Sale - those who want to help or donate items - Please call her at 702.339.8496 or Email: vikihall@cox.net She's thinking July 15 or July 22.

*** July 23, Kassidy's Benefit Fund Golf Tournament & Silent Auction at Boulder Creek Golf Course
Please contact Sam Myers at 702.696.8535 or Email: sambm@ahern.com

More dates and events to come!!!!
THANK YOU! AND HAPPY FATHER'S DAY TO ALL THOSE GREAT FATHERS OUR THERE!

June 17, 2011

Tonight we sit here extremely exhausted physically and emotionally, Ryan and I are literally wiped. Our day today was filled with what felt like a rollercoaster of emotions.  From when we got up today to sundown we have been diligently working on plans to take Kass to the Burzynski Clinic.
Fundraiser ideas have been starting to roll in.  We were able to speak with many people who are now planning a golf tournament, a cookbook made up of favorite recipes from Kassidy's softball friends, silent auction, garage sale, along with the bike ride, 5k run or walk, rubber bracelets with Kassidy's Army printed on them.  Thank you to those who have taken upon themselves to lead these events since it seems that some days we don't have even 5 minutes to ourselves. I will be updating the blog when I know dates on these events.
Also a MILLION thanks to those who have already donated through the paypal button.  THANK YOU!!! from the bottom of our hearts.  Everytime we received a donation we felt great gratitude for each of you that took the time.  We have made great progress, just today we have raised a little bit over $3,000 and this was only done with 20 donations.  Imagine what we can accomplish with so many more.  Today my sister in law put on her facebook status that if 6000 just donated $5 we would have the initial treament deposit of $30,000.  We can do this! We will move mountains to get Kassidy the treatment she needs.
I ask each one of you to please spread the word, we really need your love and support and if you can add Kassidy's blog address on facebook, forward emails, calls or texts we would be grateful. Every little bit will help!
Today we did contact some cancer aid organizations like Candlelighters and Nevada Childhood Cancer Society.  They have some great information on different programs which Ryan and I can ask for help as well.  We also received a call from Make a Wish they will be setting up an appointment with us to hear Kassidy's wish.  A friend suggested we contact them and have Kassidy make her wish while she feels ok most days.
Thanks again! We can't say it enough!
Here is a like to my friend's Don work which he has pledged to donate 100% of his proceeds those that are interested in making a poster like this: * Link is under picture for those who want to order one of your kids, yourselves, etc.

http://cyclazzi.blogspot.com/2011/06/onehundredpercent.html

June 16, 2011

Happy Day! Just now received a call from the Burzynski Clinic in Houston, TX that Kassidy's case was accepted for the personalized treatment therapy and that the doctor wants to get her approved through the FDA for the clinical trial, antineoplaston therapy, as well.  Yeah!  This news come very welcomed especially since this morning we heard from Dr. Jallo, from John Hopkins, one of the most renowned brain stem specialists in the world and he said unfortunately he cannot operate on Kassidy, that he would like to wait 3 months and wait till it grows.  Ugh! Really...... Waiting means worse symptoms that could include seizures, more headaches and who knows what else. Also heard from Dr. Somen Khatua at MD Anderson saying they would like to do a spinal tap to make sure the tumor cells that are located at the top of her spine are not cancerous, but his tumor board is very busy that he cannot get to her case just yet.  Double ugh!
Again, we feel radiation and chemo therapy are not an option. Radiation causes burns on the scalp, damages the good tissue along with the bad, can cause hearing problems or even swelling of the brain; Often swelling of the brain causes fluid build up which in turn a shunt is needed to relieve pressure and also causes neurological damages.  To reduce the swelling they administer high doses of steroids which in itself causes some pretty severe side effects.  Chemo therapy would take a year or more, sabotaging her immune systems and according to some of the moms I've been speaking to, nerve damage.  All in all, a very hard way to live!  Quality of life is important to us for Kassidy.  We would like to give her the chance to achieve her goals and dreams without being disabled.
Our appointment has been set for June 28 at the clinic in Houston and if we have been able to raise the $30,000 by then, she can start treatment 2 to 5 days after.  We will be trying to get our insurance to cover some of it, but according to them it will be very hard because the treatment is not FDA approved.  So again if anyone wants to lead a part of Kassidy's army by helping in any way to raise these funds, please contact us: ryanandmass@aol.com
Meanwhile I thank you all for you love and support!

June 15, 2011

 Kass playing night frisbee

She's sure gonna miss her brother when he goes to college this fall

Well everyone the donation button is up. I know a lot of you were asking how they could donate using a credit card.  Well the button is through paypal which is secure.  Thank you in advance for all your help.

Tonight we decided to get Kass out of the house for a bit because the weather was just beautiful tonight, we made it a whole family outing.  We found out who can throw and those that cannot throw the frisbee.  LOL (the majority could except one person which will remain anonymous)

When we got home Kass serenaded us with a song on her guitar.  Loved it! For those that do not know, Kass plays the violin at school in the chamber orchestra, but she taught herself to play the guitar and piano.  We loved to hear play whenver she decides to play for us which if very few times.  So we think of it as a treat. Also, found out a bit of info that playing music slows down tumor growth, nice little tid bit we learned today on the internet.

So here is video, Enjoy, we did: 

http://s896.photobucket.com/albums/ac164/Kassistightt/?action=view&current=SDV_0088.mp4

June 14, 2011

Kassidy started off the day a little rough, after she ate breakfast she was not feeling well at all and threw up everything she ate.  These are the times when we feel helpless and the tumor slaps us in the face.  Cancer Sucks!!!!! There I said it.

Today we heard from UCSF in San Francisco and from Children's Hospital St Louis and both agreed with the doctors here in Vegas that her tumor is inoperable, there would be infinite risks because of the tumor being intrinsic (Contained wholly within the organ).  They also both suggested radiation as method of treatment first.  NOT, the answer we were looking for. We are still waiting on a couple others doctors opinions, but meanwhile Ryan and I have decided we are going to explore the Burzynski Clinic first.  

The Burzynski Clinic seems to make sense to us more and more especially the more we research it. Dr. Burzynski odds seem much better than any doctor we have talked to so far. Today we even received more messages and calls of friends suggesting the clinic to us without even knowing we were looking at it as a choice.  Sincerely, treatment for this type of diagnosis stinks, the only options a patient has is chemo, radiation and maybe surgery.  All with very high risks and giving the problem a dirty bandaid.
So the fundraising begins to take Kass to this clinic.  Just to start her treament at the Burzynski Clinic,  the cost will be $30,000, this number does not include room & board or even monthly meds or monthly treatment cost.  Yes, it's a lot, but where there's a will there's a way and we will do everything in our power to raise the money we need to take her to the clinic.  So our first step today was to go open a benefit fund account at Wells Fargo in Kassidy's name which account #1815135494 is for those who just want to send donations directly to the bank.  We have friends and family working on a 5k run/walk, auction, Bike Ride in Kass's honor, softball tournament, bracelets, cookbooks, etc All which we appreciate for getting things rolling and can wait to be part of. All those of you that have any ideas and would like to lead a part of Kassidy's army, please email us at ryanandmass@aol.com.  Thanks in advance!

June 13, 2011

A little ray of hope today! In our never ending search of treatments we have found the Burzynski Clinic in Houston, Texas.  This clinic was brought to my attention by Matt's mom a few days ago and in friends and family researching we keep going back to this therapy.  Number one reason because there is no real serious side effects.  Chemo and radiation seem to be pretty debilitating and we are concerned with Kassidy's quality of life after treatment.
This clinic performs an antineoplaston therapy that uses human dna which includes natural peptides that are found in the blood and urine that can be used to control cancer growth.  The clinical trials are on Phase III of FDA approval, which is the last step before the FDA approves the drug to be prescribed by doctors.  Antineoplaston therapy supposedly triggers the death of cancer cells without inhibiting normal cell growth.  They "turn on" the tumor suppressor genes and "turn off" the oncogenes which cause cancer.
On their site I found a story of a patient named Jessica Ressel who was 11 years old when she was diagnosed with a diffused intrinsic brain stem glioma and after a year of therapy her tumor was gone.  She has been in remission since then and she is now 24 years old, married, with two children.  The best part of all is that she did not experience any bad neurological damage from treatment.  Also her treatment was done in 1996 and I'm sure since then the clinic has been able to better their treatment.   I do think I found her online and have sent her a message, which I hope she returns.
Downside of this process is the cost, which we will be willing to fundraise for.  I already have friends brainstorming ideas so we can get the show on the road.  We will do anything to get Kassidy the treatment she needs.  Our baby is a fighter and with her great attitude I do believe she will suceed.
"Never give up!"

June 12, 2011

We all had a great weekend.  Much needed fun and stress relief.  Kassidy was able to go sit with her team Xtreme club softball team for the JO 18 & under showcase tournament this weekend here in Vegas for two games Saturday and one game Sunday.  She was so excited to be back sitting with her fellow teammates where she loves to be the most, the softball fields.
Her team surprised her by having her name decaled on their batting helmets, she was touched and so were we.  She took part in a little bit of warmups and helping coaches with drills.  She did notice her throws were a little off though, the ball curved a little weird when she threw, but she thought that was a little funny.  She sat the bench with a smile on her face, which we immensely appreciated.
This weekend was 90 degrees here in Vegas so we were a little worried about her being in the sun so long, but she toughed it out through two games Saturday; using a glove to shield her head and scar. After those games she came home and passed out for a couple hours so she could be part of Kyle's graduation party which she felt great throughout the whole party.
Today she was able to watch one game in the dugout, but the sun was just too much for her; so she watched from under the trees for the rest of the 2nd game.  We did have to take her home right after the game since she had a raging headache and was nauseated.
It was great to watch Kass enjoy sharing that time with her teammates, but Ryan and I were saddened by the reality that she can't play.  She loves the game and softball is her game and it breaks our hearts that she can't do what she loves.
Later today, we decided to relax and have dinner with a little pool time.  The Lopez family came over and shared a little time with us.  Kass showed the boys how to play a new game that you play with cups that she learned from my friend Don last night at Kyle's party.  Check out the video:

 http://www.youtube.com/watch?v=rCouabNtGMs

This week our goal is to send Kass's case to more doctors to discuss treatments.  We will be taking our time doing our homework since Kass feels pretty good most days and we feel that we need to look at all avenues to make sure we make the right decision for treatment for her.  We hope that with God's guidance we can choose what's best for her.
Today I saw this quote by Albert Einstein and hope we have the strength to live this way:
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

June 9, 2011

Today was Kyle's last day of high school, wow where has the time gone, Kyle is officially a college student and Kass a junior in high school.  Kass did feel really good today, she went with Ryan to school and returned all her softball equipment and turned in some last minute spanish assignment.  She even drove me around and we did some errands for Kyle's party and came home to work on more research and sending more information.  

She is definitely not so happy with her muscle atrophy so she wants to work on her body a bit.  I'm sure it's hard for someone who barely had anytime at all for anything to go to a sedentary life style to one of a total couch potato.  She is my overachiever and being home all the time is driving her nuts.  So I suggested we start walking every day.  Some kind of exercise might help her, she sure misses sports.

We decided to celebrate today by going out to dinner with the whole family and Kyle's girlfriend, Megan to Geisha's Steakhouse.  We had a great time!  It's been awhile since we have been able to say that. After that Kass wanted to go watch part of her club softball team practice. Good day!

One day at a time........

June 8, 2011

Today was a bit of an emotional day! I was able to talk to two more parents with children with brain stem ganglioglioma.  The internet is truly a blessing at time. Thankful that it helped us connect with parents experiencing or have experienced what we are just starting to go through. Each one of them shared their stories and knowledge about what they have learned about the disease thus far; what treatments have worked and which have not and their struggles. The information was overwhelming, but their stories are serving as a pathway for us.  I was so touched by their willingness to help and lend a helping hand to total strangers.  By talking to these parents, seems that Kass is the oldest with this diagnosis and the fact that she's 15 years old gave them hope.  Little did they know by sharing their stories, they gave us hope.
Sadly one of the parents lost their boy in April of this year; little Matthew had complications with pneumonia which is a side effect from treatments, Matthew was 12. He had 60% of his tumor removed by a doctor in Baltimore and after he was able to walk right out of the hospital (good sign), but later on got pneumonia. His story broke my heart, I could not even imagine what these parents have experienced. Another mom her son is currently 7 years old and a neuro surgeon in St Louis was able to remove 50% of his tumor and as of today Easton's tumor is stable (meaning not growing anymore). His mom said he has returned to school and is swimming and doing karate.  What a cutie! He has experienced some debilitations though from all his treatments.  Bless his heart!
Yesterday I spoke with a parent of a 15 year old girl in Florida, which Kass was so excited about, someone her own age.  Amber has been battling since she was 12 and her tumor is stable, but treatments have really caused some neurological problems and has not been able to return to school. She is doing better now, but everyday is a struggle for her.
All in all Kassidy's symptoms are far less extensive than all these kids, but many similar to those she has experienced like hiccups, headaches, vomiting, and breathing problems. We do feel that comparing the symptoms with the other kiddos, we might have caught Kassidy's tumor early since she is not experienced weakness in her body, passing out, seizures, or even eye problems.  According to the parents though, they don't know of any kid whose tumor was completely removed or shrunk completely.  A stable tumor is what we will strive for then.
Kass today felt better today than any other day since her surgery, only a small headache in the morning.  She drove me to 7-11 for her slurpee fix, then we went to Fresh & Easy and even went with me to get her eyebrows done.  She said they were getting out of control. LOL  Oh yes and when we got home, Ryan, Kyle and I worked on the yard so Kass made dinner for us. We are thankful for the small things......

June 7, 2011

 Livestrong! What does it mean?
These bracelets have been worn by each one of our family members at one time or another and we have even fundraised in their honor, but we never really grasped the importance of what this yellow bracelet stands for.  Its importance and meaning have been vital to keep us going everyday especially these last couple of days.
Ever since Friday, we have been frantically researching and trying to learn everything we can about Kassidy's diagnosis.  Monday morning I set out to start calling cancer centers that we had found online that had some experience in pediatric brain tumor cancer and most of all experienced with brain & spine ganglioglioma.  The more we searched, we found the rarity of this disease.  So rare, that I have only found 4 parents of children/adolescents in the United Stated with exactly the same diagnosis.
My first call was to MD Anderson in Houston, TX which when I called I had to hold because Dr. Soumen Khatua wanted to speak with me directly.  He asked for all of Kassidy's medical records, MRI scans, and even wants the biopsy slides so he can make his own diagnosis and call us back with his opinion since we are not around the corner. I then was able to speak with Tabitha at St Judes Hospital, she suggested that I should look close to home since St Judes treatment for brain & spine ganglioglioma was radiation and they have only treated 5 cases.
Because of St Judes suggestion I then proceeded to call UCSF Pediatric Oncology Department in San Francisco and UCLA Pediatric Oncology Department as well and had to leave a message for Stanford's program.  Both of UCSF and UCLA are interested in looking at Kassidy's case, but were not able to tell me how many patients they have treated.  Today, I sent off all the requested records by Federal Express hoping for maybe new answers or alternate treatment programs.
We also met today with our pediatric neuro oncologist to discuss the results he had found from the pathology test that he received, from Dr. Perry, a world renown pathologist that has worked at John Hopkins and is now at UCSF.  Her neuro oncologist mentioned today that Kassidy's tumor is a grade I, but it is diffused infiltrated in the brain stem; which is not so good. He wants Kass to wait 4 to 6 weeks to completely heal from her surgery and proceed to start radiation therapy here in Vegas and that he would refer us to the radio oncologist.  At that time, we told him that we would like to seek a second opinion; which he supported since we have time before Kass can start treatment anyways.
Ryan and I received some visitors while Kass was at the hospital; parents of another Centennial athlete, a baseball player who had a brain tumor 3 years ago and is doing well now, but not the same diagnosis.  Their son was put on a very regimented diet made up of mostly organic foods.  The boy experienced very few side effects from his treatments and recovered well from them.  I truly believe the right type of food fuels and heals you. We will be taking Kass to see that doctor in the next week to get her body ready for whatever treatment is coming her way.
I know many of you have been trying to get ahold of us, but it's been a crazy week with getting ready for Kyle's graduation party, calls to hospital/doctors and just research.  Thank you for all your support and understanding.

June 5, 2011

Friday was a day we were all been waiting for.  Not exactly the news we wanted to hear, but we took the news and immediately started research.  We now know that pediatric tumors are not the same as adult tumors.  So the hospital that will treat Kassidy will need to be a hospital dedicated to pediatric tumors and specialized in brain stem ganglioglioma. We have a list of hospitals we will be calling on Monday, starting with St Judes, UCLA, SD Anderson and Children's Hospital in Boston; these seem to show that they have had some studies in gangliogliomas.  Our question to them will be if their studies and treatments have been in brain stem gangliogliomas.  Brain stem gangliogliomas are very rare, a reason why not just any cancer hospital in the country will be able to help us.
The severity of a tumor on the brain stem is so intricate we want to make sure the treatment they prescribe is exactly what Kassidy needs.  We want the best!
We have actually felt a calm since we now know what we are dealing with, but deep in our hearts a little scared of the future.  Every morning we wake up we remind ourselves that we take a day at a time. Right now, that's all we can handle.
All of us are dealing with all of this a little differently, fortunately Ryan has work that helps keep his mind busy, Kyle still has track and another 4 days of school left; even though he's developed the shingles from stress of all this, poor kid.  But it hasn't kept him from doing what he loves, running. Myself, I have the house stuff and taking care of Kass.
This weekend Kass had a couple visitors, from the picture you can see she thoroughly enjoyed her friend's company.  She keeps busy texting, facebook, skype, her bunny, reading, and watching tv.  And still with an amazing attitude.  She truly give us strength!

June 3, 2011

I've stared at these many of times wondering how could this happen, but the Lord only knows why these things happen. I just pray our journey is not so harsh on my baby.
Today I got a call from the neuro oncologist nurse saying that the results were in and the doctor wanted to meet with us on Monday.  Monday, are you serious! Ive been waiting patiently for two weeks.  I asked her to please have the doctor call us and at least give us a diagnosis over the phone.  We can't agonize all weekend thinking of "what it could be" anymore.
Anyways, he did call and told us the tumor is malignant and it's called a ganglioglioma which is rare especially because of the location of it.  That he would like to discuss treatments next week because he would like to do more research.
We feel better now that we have a diagnosis and now we prepare for what's to come with faith and courage we will fight.


Life is a journey filled with lessons, hardships, heartaches, joys, celebrations and special moments that will ultimately lead us to our destination, our purpose in life. The road will not always be smooth; in fact, throughout our travels, we will encounter many challenges.

Some of these challenges will test our courage, strengths, weaknesses, and faith. Along the way, we may stumble upon obstacles that will come between the paths that we are destined to take. In order to follow the right path, we must overcome these obstacles. Sometimes these obstacles are really blessings in disguise, only we don't realize that at the time. 

June 2, 2011

Today was a good day! Kass felt better and was able to go on two outings.  She only had a small headache this morning, but not bad enough to keep her down all day.  Loves that her stitches are out because she can lay her head down right on the pillow without the stitches digging into her head. I'm so glad Dr Schmidt only buzzed a strip on the back of her head, being that she's a girl herself, she told Kass she would try to shave a spot that could be covered by her hair.  She did have patches of her around her head buzzed for the MRI, but you can't really see those either, her hair does a good job of covering most of them.
Kass and I went to the high school today to help out to hand out ice cream sandwiches during lunch for those kids who have had good attendance.  She promised me that she would sit down and take it easy, which she did. I don't blame her for wanting to get out of the house for a little bit since she's been pretty much homebound since she got home from the hospital.
First lunch went without a hitch.  Kyle came to see us and brought Kassidy her yearbook he picked up for her.  Friends were so happy to see Kass up and around so she sat at her usual lunch table with her friends so they could talk and sign her yearbook.  Second lunch on the other hand, was a little more exciting.  Kass again saw other friends and showed off what she calls "her SICK scar" which means cool by the way. Almost at the end of this lunch we experienced our first food fight in the cafeteria.  Wow food was flying every kind of ways, kids were running for the door and so were other parents helping out.  All I could think was oh my please don't run over Kass, I could see the kids pushing and shoving out the door.  Needless to say, it was quite the experience.  We both came home and took naps after that.
Later tonight, Kass wanted to go say hi to all her Xtreme (club ball) softball team, they all have been asking about her and worried sick about her.  She got to watch them scrimmage and after the game coach came and got her to high five the opposing team.  The girls all were glad to see her doing so well.
All in all, a good day!

June 1, 2011

Today was suture removal time! Our appointment was at 1:30pm today with the neuro surgeon, so Kass and I decided to grab a quick bite to eat at Panera.  Yum! She was a little nervous for her stitches to come out, with good reason.  She did not feel most of them come out except her very last one which had healed over the stitch itself so the skin had to be broken to remove the last stitch.  She cried a bit on that last bugger.
The neuro surgeon informed us that the results on the biopsy probably will take at least another week for a diagnosis. Ugh, the waiting is so hard! But Kassidy is staying positive and wondering when she will be able to play sports again.  :)
The tumor is rare and had to be sent to Johns Hopkins and Mayo Clinic for further analysis since it's a little more complicated than what the Las Vegas doctors can handle.  Until we get results on the tumor we don't know the recourse of her treatments whether it's chemo, radiation or both combined.  With as fast as she's recovering it's hard for us to remember that this was a major surgery and the neurologist reminded us about that today.
Just going to the doctor wiped her out, she's been sleeping ever since we got home.

June 1, 2011

Well I know I skipped a couple days,but I'm trying to catch up the days I missed.
So Kass had a rough two first days with her pain level.  Finally on Sunday her pain was tolerable where she could at least function a bit.  That same day they moved her out of ICU.
On Monday, physical therapy showed up to almost remind us of the graveness of the situation.  She told Ryan, that I guess we just didn't need her since she was expecting a patient that would need help learning how to brush their teeth and walk again.  All of our prayers and your prayers were heard.  Thank you!
So thankful also for all the visitors Kass got while in the hospital, it kept her mind busy and looking forward to them.  That afternoon we were sent home.
Today makes 12 days since surgery and every day she's able to stand and walk longer.  Shes been pretty bored at home so we finally took her out on Sunday for a quick dinner our to Sweet Tomatoes, one Kyle and her favorites.
Yesterday she was able to go to her softball banquet for about an hour and half where she was able to grab her awards of the night.  2nd year varsity letter for softball, scholar athlete, she earned her white letter for lettering in 3 sports in 1 year and her all state academic because of her team having the highest gpa in the state.  All great honors!  So proud of her!
She will not be returning to school this year, her teachers have frozen her grades as is since it's so close to year end.
At this moment we take a day at a time!

May 20, 2011

Kass and I were woken up early that morning so she could start a series of new MRI, that detailed the spine and neck more closely.  Amazingly, she withstood 5 hours of MRI with only one break and no headphones.  What a trooper!
Immediately after that she was in pre-opt getting ready for surgery.  Our biggest worry at that time is by looking at those last MRI that the tumor was extremely close to the brain stem.  The neuro surgeon explained to us the risks and they were so great.  The brain stem controls everything involuntary in your body like breathing, swallowing, walking etc.  Any of these senses could be severed or damaged with any cut near or on the brain stem.
At the same time one of our high school softball mom had arm bands made with Kassidy #11 made so each girl could play in her honor.  I showed Kass this picture before she went into surgery, it brought a smile to her face.
After surgery she was in extreme pain! Ryan was at Kyle's mile race since he still did not know about Kassidy's surgery.  The waiting room filled with friends and family as the word spread.  When Kass was finally being taken to ICU this wonderful nurse stopped outside the surgery waiting room so Kass could see all of them.  This even brought tears to her eyes.
That evening we saw the article about the Centennial girls playing for Kass in the State Playoffs.  What a wonderful act of kindness.  I know that Kass appreciated it.  It was the first thing she asked me as she came out of anesthesia  "Did we win?"
Here is a link of the article:
Nevada Preps Article

May 19, 2011

It all started during softball season, the problems breathing, then the headaches and finally the random vomiting & fatigue.  All this did not keep Kass from trying her hardest and never missing school or practice unless she absolutely had to.  She does not like to make up work or miss practices.
We first started with the lung specialist who diagnosed her with vocal chord dysfunction.  When the headaches started more often we felt they were just part of growing up, but when fatigue and vomiting got in the way of school and sports we knew there was more to the story.
Pediatrician tried, but ended referring us to a gastro doctor which happened to order a head CT scan for a "just in case"scenario.  Well after two weeks of waiting for those results, the scan showed something abnormal in the back of her cerebellum and where the spine connect, but they could not really determine what it was because the scan really didn't focus on that specific part of the brain.  So we were then referred to do an MRI.
The MRI was scheduled very soon after on a Thursday which I had Ryan come with me to make sure Kassidy would be alright.  When the radiologist were done we were asked to take the films immediately to her doctor, no appointment necessary.  My heart sank immediately.  Without hesitation or even waiting in the waiting room we were told bluntly that she had a brain tumor and that he would walk us upstairs to his neuro oncologist colleague.
The neuro oncologist proceeded to tell us that he felt Kassidy should be hospitalized immediately and surgery would be done the next day.  Our world came crashing down! I felt like I was experiencing an out of body experience.  Thank goodness I had asked Ryan to come along, cause I don't think Kass and I would have been able to hear all that by ourselves.  After asking many questions we decided to come home and pack and decide how we were gonna tell Kyle, since he had to run the next day at State.
Needless to say I was a mess and will you guess it who drove me home.  Yes, Kassidy!  She composed herself before we got home knowing we didn't know if we wanted to tell Kyle.  She packed her things and while Kyle went to spaghetti dinner we left for the hospital so we could hospitalize and get her ready for her surgery/biopsy for the next day.