September 27, 2011

She made it though her first day back to school! Yes!  Thank you God.  Ryan and I were so worried how she would do the first day.  Not only through the 3 hours of class time, but driving herself for the first time.  We practiced all weekend back and forth to school and back so on Monday morning with extreme hesitation I let her drive herself to school for the first time.  Oh man just like with Kyle, I was a ball of nerves and demanded a text letting me know she arrived.  All was good and she did great.

As she pulled out all I could do was pray! LOL

When she got home she crashed for a couple hours, but was able to get up and study a bit with Ms. Macioce, our friend, and Kassidy's tutor.  We were fortunate to get Ms. Macioce approved through Supplementary Services through Clark County School District.  So if Kass misses more than 2 days in a row she is able to get paid for tutoring Kass.  Kass was able to work for about 50 minutes but then tired, but we will try again this week to catch her up.  So far so good though!

After school on Monday, out for 4 hours..

On Saturday we had gotten a surprise in the mail for Kass, but I wanted to wait for Ryan to help me give it to her on Monday evening.  A couple months ago I had filled out an application for www.journey4acure.org for a free ipad2 for children with cancer.  My friend Maureen, who I met in Houston had told me about these three organizations that are working together to help children with disabilities and cancer to give them a gift of an ipad to just make their lives easier and bring them joy.  What an amazing cause!  Well Kass was one of the ones chosen.  Pretty cool right!  We wrapped it up in a gift and she was so excited to get it.  It has been rough for her lately and it's sure good to see her get such a great gift.  We are honored!  Thank you Journey4acure!

Please check out and support these amazing organizations:

www.journey4acure.org

www.ipads4cancer.com

www.a4cwsn.com

Thank you Journey 4 a cure for making our girl smile!

 Today, I had the opportunity to go on Channel 13 with Christina Luzod, the Livestrong representative of Las Vegas, to speak about this Saturday's ride and tell a bit about Kass.  I was so nervous, but pulled through it.  I hope we get a great turnout at this year's ride.  It's a great cause and now very close to my heart.  All of us will be there on Saturday in our own booth.  Come see us we will have great raffle prizes, Kassidy Army bracelets and t-shirts.

The link to register is:  www.lasvegascancerfoundation.org

Still need volunteers for the Livestrong Ride, Thursday & Friday for packet pickup and the day of the ride form 9:30am to 1pm.  Email me at: ryanandmass@aol.com

The link to Channel 13 News Interview: http://www.ktnv.com/multimedia/videos/?bcpid=991773990001&bckey=AQ~~,AAAAAyz2bGk~,Zn96CuMjjKOIu-_k6JUacSsNpS9uCNWc&bctid=1185475758001

I did get a call from Dr Acelar at the Burzynski Clinic saying that Dr. Burzynski would like to do a pet scan on Kass.  The MRI did show signs of maybe a new lesion on the right side which could be caused by the tumor itself.  Which I was told about the day of the great news, but I chose to celebrate the good news first.  The pet scan would rule out if it's an active site or not.  Please pray that it's not!

Also, Dr. Rhee, gastro doctor wants to do an endoscopy on Kass because her test she had done last week came out pretty normal and he wants to rule out ulcer or gastritis.  He would like to get to the bottom of the stomach issues.  Her tests from last week only showed a bit of elevated white blood cells and borderline irritation, but nothing serious so he thinks the endoscopy will help determine if the steroids are causing havoc in her stomach.  Ahhh never a dull moment! Sure keeps us on our toes.

I can't help sometimes think how last year some problems seemed so big.  But now those problems are just things I would brush off my shoulders these days.  This experience has definitely shown us what is important in life.  Some things just do not even matter anymore, they are just secondary issues that can be solved or just plainly overlooked.

Life is one big road with many signs. So when your riding through the ruts, don’t complicate your mind. Flee from hate, mischief and jealousy. Don’t bury your thoughts, instead put your vision to reality. Wake up and live.

Author Unknown

September 26, 2011

We have been back and forth and back and forth of what to do for Kassidy's schooling situation.  It has been very difficult to decide what the right thing to do is.  We have seen some signs of improvements in her lately, but  she had said before she wanted to stay home and do AISHS (a type of home school program) at home, but only if she was able to be part of sports at her home school.  Unfortunately, with AISHS, this is not possible because the students on this program are not classified half time students.  Ugh!

Ryan took half day off on Thursday to be able to make calls and talk to the right people for answers so we could all make a decision.  Kass counselor suggested she drop 2 classes and only have 4 and since Centennial is on block scheduling she would only have to go to 2 classes per day which would only be 3 hours a day and this way she would qualify to participate in sports.  The other option would have been virtual high school and for that she would have to login during certain hours just like school at home.  So we all decided we would try one more shot at her being at school for a very short amount of time and see how it goes.  Hopefully this works, and if it doesn't we go to plan C, whatever that might be...... We hope being with her peers will help her be motivated, we were afraid if she stayed home it would be easier to depression to set in.  So we will give it a try.

On Friday she rested pretty much all day so she could be attend the Homecoming football game with her friends.  She did really good and was able to hang for most of it.  The next day again I made her rest so she would be able to enjoy the Homecoming activities.  I was able to find a dress that would work, but I had to have my friend Renee do her little magic to it so the dress would cover her port and make a hole in the back for her tubing to go through.  (Thank you Renee) The dress was black and we decided we would add a little red for color.  She looked beautiful in it!  Not exactly the dress she would have picked, but she put it on which was half the battle.

Thank You Marilyn for the beautiful do!

The night went without a hitch, pictures at Desert Shores, dance, limo ride, dinner at Margaritaville and dessert at Prime at the Bellagio overlooking the fountains.  She lasted all night and all the kids swore to me they would watch for signs of tiredness and call me if I needed to come pick her up.  I was a little nervous since I was flying solo that night since Ryan was in Boise watching Kyle run the Bob Firman Invitational & getting in some Boise football.

Kass in a dress, only seen maybe once a year! LOL

Kass & Jake

Pretty girls!

She came home that night with a big smile on her face and that's all that mattered.  Thank you Jacob for taking our baby girl, you are truly an amazing young man.  Also, thank you to Don for all the amazing pictures.  Your a great photographer!

Unfortunately, Sunday ended up being a sad day.  Kassidy found her pet parakeet, Max, dead in his cage.  Max has been with our family for almost 10 years.  All of you know Kass is an animal lover and if it was for her she would have every animal under the sun.  RIP Max! You will be missed.

Kass & Max

September 22, 2011

On Tuesday we finally were able to see the gastro doctor.  I was a little nervous walking into the office, since we hadn't been back since the dreaded day, May 19, 2011.  At this doctor's office was were we were told Kass possibly had cancer and that she had a brain tumor; the day our world came crashing down.

We saw a new doctor which was very nice and he ordered a couple of tests to check Kassidy's gall bladder and liver; he also wanted to make sure she still doesn't have a stomach virus or has celiac disease (gluten intolerant).  We hope to have the tests results by next week.  He also gave us a stronger stomach protectant for her to take with her pills; she does take something like 35 pills a day which could be also irritating her stomach and pro-biotics to help with digestion.  We are hoping the fix is that simple and we do not have to do an endoscopy.

We also have finally able to help her rash around her port.  She's developed an allergy to the tape of the tegaderm that protects the area.  Our friend Robert came over and showed a couple tricks to do while cleaning the area and a new product to use that allows the area to breathe a little more.

This was the rash before, now it's so much better!  Ouchie.

Kass has been feeling much better than what she has been, we are so thankful for that.  We are starting to see glimpses of our little girl back at times; we cherish those moments.  Today, she felt so good after her chiropractic appointment she wanted to try a shot at taking her driver's test.  Well, she PASSED! Ha!

Our baby girl passed her driver's test, great job Kass!

After the appointment she drove me to school to pick up some things from coach Spencer, and oh man I'm just not ready yet to give her the keys and say go for it!  She will have to practice a little more for my own comfort level.

Tonight she also wanted to just stop by her travel team softball practice.  It's been so long since she has felt good enough to go support them and watch them.  She was able to help coach Jeff with a couple drills, she tried at hitting the ball, but with the backpack on and the port, it hurts to swing.  But what  a great night to see her smile from ear to ear taking part of what she loves the most, softball.

Kass at team Xtreme practice!

Today was a GOOD day!

September 20, 2011

Happiness is the realization of God in the heart.
Happiness is the result of praise and thanksgiving,
of faith, of acceptance;
a quiet tranquil realization of the love of God.
White Eagle

All day yesterday, we waited ever so patiently for the MRI results call.  My phone was an extension of my hand at all times.  I learned from our last experience that is best to wait for the radiologist call and not interpret medical mumbo jumbo myself.  LOL!

The call came in around almost around 1pm. And guess what? We have another 8% reduction of the tumor!!!! Halleluyah!  Yes, God is good.  My worry immediately turned into PURE joy. After almost 3 months of antineoplaston treatment, Kass's tumor has shrunk a total of 20%!!!!!  

TAKE THAT CANCER!!!

Today we celebrate at Yogurtland on Centennial & Ann Road!  All day today if you mention you are there for Kassidy, they will donate 20% of the sale to her.  Hope to see you all there!

Also don't forget that you can now REGISTER for Kassidy's Army 5k run or 1 mile walk for November 12 at 9:00am at W. Wayne Bunker Park.  Just click on this link.

http://www.imathlete.com/events/KassidysArmy5KRun1KWalk

THANK YOU ALL FOR YOUR SUPPORT!

September 18, 2011

A very eventful week for the Merritt family, but full of blessings! It started off Tuesday night with a bit of a car accident.  My friend Holly and I were on our way to pick out some furniture for her new condo when we were distracted and engrossed in our conversation when she missed seeing a light pole and we hit head on in her car.  By the time we saw it, it was just too late.  Thank goodness we both were wearing our seat belts and were only going about 20 mph, but the air bags deployed and the car bounced back about 10 feet.

Car is totaled btw!

Ryan came to our rescue and we decided we better get checked out at the hospital, since I was having tightness in my chest and Holly had air bag burns on her arms.  After about 2 hours Holly was discharged with minor injuries, but I was being held up because my EKG was abnormal.  To make a story short, the impact of the air bag was pretty hard, which threw of the rhythm of my heart a bit so I had to stay and be admitted for observation and a battery of tests.  But all tests were good and I am as good as new, just have a pretty bruised up chest.  My biggest disappointment was that I was not able to take Kass to her MRI appointment on Wednesday, but Ryan did a great job.  This time we patiently wait for the results.....

Thank you all for your prayers, wonderful messages, and good thoughts!  We truly believe that God is holding our hand through this whole process.  The people he has put in our path, is definitely the best part! To see their good works, kindness, and compassion has been life changing.  We cannot wait till we can pay it forward in the near future!  Thank you all, we appreciate you.

Kass still has had a rough week and was not able to attend school all week, but we have seen improvement in her in baby steps each day. Her pediatrician was able to help us get her an earlier appointment with the gastro doctor for this next Tuesday.  Hooray! Maybe we will finally find out what's going on with her tummy troubles.

We have also been trying to figure out what the best choice is for Kass about the school situation.  Ryan and I are afraid that if she stays home, she will miss out on the interactions with her peers which we believe is important for overall attitude and healing process.  But being at school even for the couple hours is just too much for her everyday.  :( Sometimes the decisions that we are faced with are so just so hard to make.  We have asked her opinion and this week she has decided that she would like to stay home and study at her own pace, but only if she is allowed to be part of a sport at school.  So, this next week we hope to finalize at least these semester's plans and make adjustments to fit her needs.

On Saturday morning we woke early to go support the 21st Candlelighters Childhood Cancer Foundation 5k run & 1m walk.  We were excited to be part of the 2400 participants that helped raise $150,000 for the organization to help children and their families with this dreaded disease.  Ryan, Kass and I decided to do our mile walk proudly wearing our Kassidy Army shirts.  Next year we would love to form a team to help represent and support this cause and make a difference.

Did you know that today 40 families will hear the devastating words "your child has cancer"?

Please help us raise awareness and support these children and families.  Their site is:
www.candlelightersnv.org

Kass & Deputy Drip

Kass & The Duke, LV Wranglers Hockey team mascot

After the walk we stopped to say hi for a few minutes to the Leavitt Middle School student council, cheerleaders and ROTC who were doing a Car Wash for Kass.  Great to see the little ones working so hard!  I forgot how small they still are in middle school, but they were washing cars and holding signs on the corner directing traffic.  We are thankful for all their hard work!

Our weekend ended with a great celebration of a dear friend.  My friend Rosemarie celebrated her 1 year anniversary of being Cancer FREE!  Amazing right!  Last year when I found out that my running buddy had cancer I just couldn't do the Las Vegas half marathon without her.  This year we will train and do this years half together again.  My friend Ro is courageous and taught me that Cancer doesn't always win.  That you just fight like hell!

Happy 1 yr anniversary of being Cancer FREE Ro!

September 13, 2011

After that rough week we started seeing some signs of improvement in Kass finally by Friday evening, still pretty tired, but more alert by the evening.  By Saturday, she actually stayed up most of the day and went and did a small errand with Ryan.

We've been wanting to do a surprise party for Kass's 16 Birthday in a weekend in September, but after texting some of her girlfriends most of them will be out town the following weekends so Ryan and I had been waiting to see if Kass improved to maybe do something on Sunday since we felt Saturday was too soon for her.  On Friday evening, I texted her friend Ashlee to see if she would mind taking her out of the house for a movie and maybe ice cream to get her out of the house; she thought that was great.  Now the problem was, how do we throw a party in less than a day and half.  Well I asked for help from some of her softball friends on sending the info out and my friend Holly and I went into action on Saturday, we bought almost everything we needed.

That same day, I get a call from my friend Sandy's son, Jacob, who Kass has known since she was 2 years old.  He wanted to ask Kass out to Homecoming.  I took Kass with me to Trader Joe's that evening and he decorated her room with balloons and outside her door hung 2 balloons asking her out to Homecoming.  Jacob is a great friend to Kass, by the way she loved the attention and it was great to see her smile.

Add caption

On Sunday, we prepared some of the food while Kassidy slept in and just waited for the moment she walked out the door to setup the party stuff.  I am proud to say, that everything came out without a hitch and we couldn't done it without the help of Mia, Chelsa, Ashlee, Savannah, my friend Holly and of course Ryan.  We were a team and just got it done.  By 5:30pm we were ready.  Everyone got there just before 6 and parked outside the culdesac and we waited for Kass to arrive.

Ha, what a great surprise, which by the way was her first ever.  As she walked in from the garage we all waited in silence until she looked up and we all yelled unison "SURPRISE".  She looked up in shock and got so startled that she fell backwards.  Pretty funny!  Mission accomplished!  And the party began.

Startled look as we all yell "Surprise"

LOL!

That smile is worth a million!

Happy Sweet 16 Kassidy

We want to thank all those who helped us make her day special.  I know it was very last minute, but the turnout was amazing.  Kassidy has some great friends that love her.  We thank God for that!

Kass's girlfriends!

On Monday, her actual Birthday she decided she wanted to try going to school.  By her 3rd period I received a text from her saying that she was just too tired and her stomach hurt again.  I immediately went to get her from school.  :( She came home and slept from 11:30 to almost 4pm, I had to wake her so she could eat a little something for lunch, but she went right back out.  At 4pm she woke up and said she felt better and wanted to go to Cheesecake Factory for her birthday dinner.  We met Ryan there and he surprised her with a new guitar that one of her friends bought for her, she was elated!

Thanks Jim Grant for the new guitar for Kass!

Kass after opening our gift, tickets to Never Shout Never Concert in a private booth.

After dinner her and I headed to Mandalay Bay to see Lion King play & musical with some friends.  On the way there I kept telling her if she did not feel well we could just go another day.  She insisted on going and since we would be sitting I felt it was not going to affect her much.  During the show her pump went off (beeping). Ugh!  After the intermission I noticed she was getting so tired, I told her we would leave before the crowds which I'm glad we did.  Cause on the way out she was having a hard time walking and not really making sense.  I could not get her to the car fast enough.

Needless to say Ryan and I called the doctor, they told me to take her off treatment till at least tomorrow and draw her blood early so they can get STAT results and see what's going on.  Also to make sure she drinks water all night.  So we set out alarm for every hour on the hour last night and Ryan and I would take turns making sure she was ok and she was drinking.  So today she will not go to school and we wait to see what the clinic in Houston says.

Also yesterday, I made an appointment with a gastro doctor to see if we can narrow down her stomach problems, but of course the earliest appointment is the 29 of September.  Really!  I would like Kass just to feel functional.  We also emailed her counselor at school to see what are other options are for her for school since what we are doing now is just not working out.  But to tell you the truth I could care less about school right now, I just want my baby to feel better.

I hope she knows that yesterday we celebrated HER.  She really teaches us everyday what strength and courage really is.  My Kassidy is an inspiration to us and many.  She battles this damn cancer every day and she will win.

HAPPY 16TH BIRTHDAY KASSIDY!  Your Dad and I love you more than you know.  You are one of our best gifts.

September 8, 2011

Well, I guess I spoke to soon! Kass was home all day not feeling well at all again.  :(  She had done so well on Tuesday and even had some good energy in the evening. Ugh!

Yesterday, we took her back up to her full dose which she had been previously on before she got sick last week.  That day at school went pretty well with a little bit of tiredness, but no other symptoms.  After school she wanted to go support her tennis team and go watch them play their first match, so she rode the bus with the team and sat to watch.  I met her there to change her medications bags around 3pm, but when I got there she was feeling weird, I had to aid her with her walking, she was having a hard time enunciating her words and did not look well.  We decided to go into the club house for some rest in the cool air condition and change her medication.  She felt better after and she watched a bit of her teammates, but we left soon after.  In the evening, she started feeling a bit worse and fatigue started settling in dhard.  She didn't even get to do her homework that night.

Kass with Coach Melodie. She was watching her teammates play their 1st match.

After she got home from watching tennis she was wiped, she feel asleep sitting up.

This morning she woke up and was extremely tired, stomach ache and looked so pale we decided she should stay home.  She layed on the couch all day sleeping.  Her doctor instructed me to lower her dose back down and try that.  We now pray, pray, pray and wait to see if that helps.

We are just so sad that she's had such a hard time already with the first two weeks of school.  She really wanted to try to go to school, but now we are not so sure how all this is going to work.  My heart breaks for her because I feel all the things she loves to do are slowly being taken away from her.  Watching our baby suffering and not being able to really do anything is one of the hardest thing we've have to do as parents.

Please, please pray for our little girl!

September 6, 2011

Kass is back to school today! Hooray!

She was finally able to hold down liquids and food on Saturday morning.  Friday, was still quite rough for her since every time she ate or drank it would all come back up.  But by Saturday at lunchtime she was actually hungry and wanted to eat.  We were so excited.

This is what Kass did all weekend. Her body needed it.

Unfortunately, Kass was not able to attend the Car Wash on Saturday.  She was so bummed she could not at least make an appearance, but it was a very hot Vegas day and she still got dizzy every time she walked around.  Ryan, was able to go help with things at the car wash for awhile though.

Again another amazing fundraiser.  We are so thankful for all that helped and volunteered.  Thankful for Coach Spencer and Karen for all they do for us.  They are angel sent.  Also, to our amazing neighbor, Cindy Drew for sitting in the hot sun all day, the Centennial ROTC, Dance Fusion, some of the Centennial softball girls, Nicole & Natalie Moore and to Wyatt & Earl Burge. I hope I didn't miss any.

We are very excited for Kassidy's next MRI which will take place on September 14, even though this one will take a little longer than the last one that only took 45 minutes.  I guess last time they made a mistake and only did an MRI of the brain and not the spine as well.  Why we were out of there so fast.  Dang! The Burzynski's radiologist wants to see the progress of her tumors also located on the top of the spine so it will take a bit longer.

Decadron dose has been reduced by 1/2 mg in the evening since Monday, and so far so good.  We are crossing out fingers that the natural supplements work their magic.

September 2, 2011

I'm angry at Cancer! How dare it decide to take home in my baby girl's head and become a ticking time bomb in one of the most crucial parts of her body. Not one person deserves to go through this especially children.  Cancer sucks!

Yesterday morning Kass came to me with a very bad stomach ache, she said that she's been kinda having flu like symptoms since last Wednesday which she thought were just from the juices she'd been drinking or heat and it had come and gone since then. At first I thought it might be caused by the new natural supplements, but she had started the supplements on Friday and her symptoms had started on Wednesday.  So I decided to let her stay home from school and rest.  As the day went on her symptoms worsen, more trips to the bathroom, worse stomach pain, fatigue, nausea.... So I gave her the medicine she has for nausea and some flu medicine to help with the stomach

Marilyn, from the Burzynski Clinic called and told me to stop her treatment infusions and start giving her water with electrolytes and watch her and if I felt her symptoms worsened to take her into the doctor.  I spoke to Kass after that and she was feeling a bit better and that she wanted to take advantage of some sleep since she was off treatment and would not need to get up and go to the bathroom so many times.

After dinner, she ate fine, but then nausea set in and she started looking really pale and started throwing up.  She became so weak that my 5'1" body could not help pick up her weak 5'7" body of the floor of the bathroom.  Thank goodness Ryan was home and we decided it was time to go the ER.

At the ER she threw up so much she completely emptied the contents of her stomach and could not walk without assistance.  Her body was now dehydrated and just needed fluids.  Since she had been sleeping so well off treatment she didn't want to wake up in the afternoon to drink water.  So at the ER she was given fluids through her catheter, blood & urine tests were done as well as a cat scan of her brain.  Test showed a bit of dehydration, no inflammation on the brain and her labs were ok.  It came down to a case of the dang viral flu bug!!

Our baby girl!

After another 7 hours in the ER and we are home at 3am in the morning.  We are exhausted!  Please pray for our little girl that she starts feeling better so we can put her back on her treatment and continue her road to recovery.