We are very sad to report that there is a young man going door to door in the Las Vegas area representing himself as part of Kassidy's Army. We would NEVER go door to door asking for donations, please call the police or email us at kassidysarmy@live.com. See official fundraisers below!

Tuesday, November 29, 2011

November 29, 2011

Yesterday started a little deceiving.  Kass looked great and she headed off to school with a little of excitement since it was her first bowling match against Boulder City HS.  I met her at the Santa Fe Bowling alley to change her medication bag and she seemed really quiet.  Watched her bowl all of her 3 games and she told me she would meet me at home.  When she got home she layed on the couch and told me that she was feeling very dizzy.  I asked her in a scale of 1 to 10 how bad was it, she said an 8.

That's when I proceeded to call the Clinic to ask them what had been the results of her blood test I had dropped of earlier in the morning at Quest.  The doctor on call called me back and instructed me to take Kass to the ER because her hemoglobin was at a 7.7, her plateletes were at 440, and her HTC at 23.7.  that she would need 2 units of blood, she would need a blood transfusion.  So I left my dinner untouched and out the door we went.

While at the hospital they did another blood test to confirm the earlier findings, an x-ray to make sure her port was still in where it should be, a cat scan to rule out any bleeding in the brain, a glucose test to test her sugar levels and gave her an IV bag with fluids.  We were told that she would have to be taken by ambulance to either Sunrise or Summerlin Hospital since Centennial Hospital does not have a Peds (pediatric) unit in order to the blood transfusion.  Ugh, I knew that!  I guess with the craziness of getting out the door I did not think of it.

Well, the blood test then showed her hemoglobin at 9.4, the x-ray showed her port was fine, the cat scan showed no signs of bleeding and her blood sugar levels were fine.  WTH!  Her dizzines was there still, but not as bad so they gave her a little bit of something to eat; after a couple minutes she started feeling better.  We did not understand since she had eaten breakfast and lunch.

So needless to say we still don't know what happened.  We don't understand why we keep getting low hemoglobin readings when we haven't changed our method of drawing blood.  Today we are waiting on the doctors at the clinic to meet to discuss Kass case and get some answers.  Meanwhile she is off treatment and we wait.

Thank you all for you prayers, thoughts and words of encouragement.  We are so glad we are not alone in this journey.  Sometimes hard to bear, but your kind words give us strenth.  Thank you!

Sunday, November 27, 2011

November 27, 2011

It's Sunday night and Ryan, Kass and I sit here in an extremely quiet house.  We had a wonderful Thanksgiving week full of good memories and a house filled with family and friends.  Had a bit of bumps in the road with Kass while on vacation, but at the end it ended up being one of the best Thanksgiving ever.

Sunday all four of us left for Hollywood, California to visit Universal Studios; the kids had never been.  We were a bit nervous since it was raining cats and dogs the whole trip there, but on Monday morning the sky was clear and we were ready to conquer the park; of course first we had to find a Quest lab to take Kass blood sample to.  

Kass had been a little more tired than usual on Sunday so we decided to get her wheel chair at the park so she wouldn't tire so quickly.  It was kinda fun since we were able to get front row seating on all the rides.  We had to keep thanking her for the priviledge, who needs to pay for front of the line passes! Ha! She lasted till a little bit after lunch and you could see she was just done.  We all went back to the room to change her medicine bag and she crashed hard.  We were suppose all go back later, but we were having a hard time waking Kass; so Ryan and Kyle went back to the park and I stayed back with Kass.  That day she slept from 3pm till the next morning! 
Kass and Churro her turtle pillow pet sleeping at the hotel room

The next morning she looked better and was ready to go back.  We enjoyed being at the park, that day until 1pm and went back to the hotel to check out so we could go to the taping of the Jay Leno's Tonight Show.  Ryan, Kass and Kyle had never been to a live taping.  Unfortunately we were not able to take any pictures at all not even with our cell phones, I guess some kind of copyright laws.  But it was great to experience and we got to see Dane Cook, the comedian, Julie Scardina with the coolest animals, and listen to Hot Chelle Rae, the band, not sure who the heck they were, but they were good.  When we got out I got a frantic call from the Burzynski Clinic asking how Kass was feeling.  I explained to them that she had been extremely tired the day before, but today she seemed to be feeling much better.  They told me that they were worried because Kass blood results showed her hemoglobin at 8.4 and 8.5 is transfusion time.  She was not showing signs of too much concern by then so they instructed us to do a full panel blood test again the next morning just to check it and if it came back low we would have to come home early and setup a transfusion with her local doctor in Vegas.  Ugh! Never a dull moment.....
Universal Studios

That evening we checked in to our hotel right off the beach by the Santa Monica Pier.  Wow, what a view!  We tried to enjoy dinner and then sat by the fire pits overlooking the ocean till we were too tired trying to enjoy each other.  The next morning, Kass was still looking better and we were hopeful.  Ryan had to take Kass to a near Quest because I had not brought extra blood tubes, so when they got there of course no one would use her port/catheter they had to stick her to draw her blood.  So irritating!
Our View

When they got back we had breakfast by the beach, rented cruiser bikes and rode to Venice beach to get Kassidy's henna tattoo she's been wanting forever.  She got "Never Give Up" on the inside of her wrist.  She's been really wanting a real tattoo, but Ryan and I are hesitant.  We will have to think about it.
Our cruisers

Kass getting her "Never Give Up" henna tattoo

We then rode the Santa Monica pier ferris wheel and had lunch at the pier, but by then it was just time to go back home.  It took us 7 and half hours to drive back home from LA, but we did not care.  We had gotten a call from the clinic on our way home letting us know that Kass's hemoglobin had gone up to 10.5.  Our prayers were answered.  We all had a great time on vacation and enjoyed each other's company.  In Kassidy's own words, "the best part is that my family is together again".
Santa Monica Pier

Thanksgiving morning, Kass was too tired to come with us to Catch the Gobbler 5k run and 1 mile walk.  It's our tradition every Thanksgiving morning.  We had a great time, but really missed Kass, but we understood and wanted to make sure she enjoyed Thanksgiving with us later that night.  When we got back it was cooking time.  We all went into mach speed, every single one of us helped out.  It was great!  Around 3pm Rosario and her husband Jody arrived, my friend Holly, then my cousin Ari, her baby, my cousin Jose Carlos and Ari's friend Alba arrived from Utah.  We had an amazing Thanksgiving dinner together with some games after.  Kass went to bed and we geared up for Black Friday.  We were very lucky this year and were home by a little bit after midnight.
The gang at Catch the Gobbler

Kyle wins 3rd overall with a 16:11 5k time
Kass and Baby Thiago (cousin Ari' baby)

The rest of the weekend, we watched movies, went bowling, dinner and just enjoyed each other's company.  On Saturday they all helped us set up a booth at Sam's Club at Centennial Pkwy to start selling Bulldawgopoly, which has turned out amazing.  It's a game similar to monopoly that features Las Vegas businesses, Bulldawg sports and clubs.  Each game is $25 and 100% of sales go towards Kassidy's Army.  We will be at that Sam's Club again next Saturday selling the games or you can order one by emailing kassidysarmy@live.com.
Bulldawgopoly Cover

Bulldawgopoly Board

Today we dropped of Kyle at the airport so he could go back to Boise, we had an amazing time having him home.  Then we said good bye to the rest of the family.  Thank you all for being part of our Thanksgiving, we had a great time.

Saturday, November 19, 2011

November 19, 2011

Whewwww what a week! Our patience and faith was definitely tried this week.

Thursday morning was the roughest for Kass, she had been off treatment since midnight the night before since she could not eat or drink anything to prepare herself for the gastric emptying scan so again she was not feeling well in the morning when I woke her up. 

When we got to Steinberg checking in went much smoother than the day before.  Thank you God! I don't think I could have taken another fight like the day before.  Kass was asked to eat a shredded turkey sandwich that I brought with me and the technician put radioactive drops so they could see the progression of her digestion on the scan.  She had such a hard time eating the sandwich since she was feeling nauseous and her poor hands were shaking as she ate it.  The technician told her that if she threw up, the test would have to be rescheduled.  To tell you the truth I would have not mind, but she did it!  I was so proud of her, she's so strong.   

I got to sit right outside her door and could see that she had fallen asleep on the table.  Sigh!  While sitting there, I had two ladies looking for me, they came over and apologized for the misunderstanding that had happened the day before and also said they would try to figure things out with the insurance.  When I got home I got a call from one of them and she told me that we would be reimbursing us for the MRI charge.  Wow, talk about blessings...

Soon after we got home I was able to hook Kass back up to her medicine and it only took 30 minutes and her whole persona started changing.  Amazing how the medicine makes her feel so much better.  We noticed that when she's off she has her old symptoms magnified, really bad hiccups, nausea, headache, off balance...

That evening right before we went to bed we got an email from our doctor at the clinic.  She explained the MRI results; she said that the tumor seemed to be stable (meaning unchanged) and the previous lesion found last MRI was slightly less enhanced, meaning it seemed to be a tid bit better.  See how it had been quite the last two days, we didn't take it so well, I guess we were hoping for more shrinkage.  It took us till the next day to actually accept the fact that it was good news; that we should be thankful for the news of no new growth.  We are just a little impatient and pray that the treatment keeps working.

Friday morning, Kass's pump decided that it was going to act up.  It took me over an hour to get the dumb thing to work while talking to tech support about troubleshooting it.  I was afraid that I was going to have to the drip old fashion system and have a heart attack at the same time.   So glad the person on the phone was quite patient with me!  Got it to work just in time to get Kass back to school.

That evening we picked up Kyle from the airport.  It was so great to have him home.  We are all excited to be able to spend a week with him before he goes back to college.  It's a breath of fresh air.  Kass and him have been inseparable ever since.
Celebrating Kyle being home! Sushi, yummmm

We hope everyone has a wonderful Thanksgiving holiday.  Remember to be thankful for the important things in life, I know we are.

Wednesday, November 16, 2011

November 16, 2011

This morning I posted this picture on my facebook not knowing what an important part it would play in today's events.  All of you know that today was MRI day.  Always a anxiety filled day from beginning to end.  Not only because of the fear of the unknown results, but because Kass has to endure being off treatment (which makes her feel weird in her own words) and she has to endure laying still up to 2 hours in the MRI tube (extremely hard for anyone).

This morning at Costco with a friend I got a call from Kass saying she was at the nurse's office and she was not feeling well and was wondering if I could come pick her up.  So my friend Lisa and I hurried thru Costco and flew up to Centennial. While on our way I called the Burzynski Clinic asking what I should do about it her symptoms.  They suggested giving her emergency liquid decadron that's administered thru her port/catheter if she was feeling too bad, that it would help immediately with the inter cranial pressure that she feels when off treatment.  When I got to school she just wanted to go home and lay down, she did not want the decadron. I hate it when she doesn't feel good!  I let her rest a little and fed her some lunch and soon after we were on our way to Steinberg Diagnostics for her MRI.

We got there 10 minutes before our required time.  When I got up to the window to check her in I was informed that the insurance had not approved this MRI. WHAT!!! Then what what the hell were we doing there.  After going back and forth phone calls with the Clinic, Steinberg's insurance department and my insurance I was fed up.  I was mad that they wanted to reschedule Kassidy, I explained to them that she has to be off treatment 4 hours before an MRI and that she does NOT feel well off it and I was not about to do it again to her if it was not needed, that I wanted to just pay for the dang MRI and get on with it; that we would deal with insurance later. Well $2500 later we were in the MRI room.

Since, our appointment got a later start we tried to hurry after to the Fedex office to drop off the MRI cd to be sent to Houston to be read by the clinic.  We got there 5 minutes too late! UGH! Really!  Kass just wanted to go home at that moment, so I dropped her off with Ryan so he could start back up on treatment while I went to the main Fedex office on Cheyenne and Martin Luther King.  I was not a happy camper.  While on the way there, I was on the phone with Ryan to just talk to him about today and was so engrossed in my conversation that I turned on a wrong road.  I was so annoyed because I was still competing against time to meet the other deadline time at the main Fedex office.  I had to make a u-turn and as I did so a car was coming so I had to turn into a business complex and guess who I see.  A Fedex truck!!!!  My heart jumped for joy and I left my car parked half assed and ran and asked this Fedex guy if I could give him this letter to send overnight, he said "absolutely".  All I could do was cry!!!!

What a day!

Monday, November 14, 2011

November 14, 2011

Blessings - one of the dictionary's definition: God's favor and protection.

We are truly being showered with blessings every day, but sometimes hard to notice them through our frustrations, fear, and craziness of every day.   But Saturday was one of the days when our blessings were plain and clear.  What an amazing day! The 1st Annual Kassidy's Army 5k Run & 1 Mile Family Walk was a complete success.

Earlier in the week we had a grim weather forecast, fear of not enough volunteers to pull this through, and maybe not fulfilling our goal of 200 participants.  But at packet pickup things went well and by Friday night we had well over 200 registrants.  What a great relief!  The day of the race, we ended up having beautiful weather and almost up to 300 participants, and almost 60 volunteers.  Wow!!!

The support and energy was heart felt.  From registration, to opening ceremonies, race/walk, awards and raffle prizes you could feel the positivity in the air.  So fulfilling to see friends, family and friends of friends out all in one place supporting Kass.  It was an overwhelming feeling!  Of course, at opening ceremonies my emotions got the best of me while thanking everyone for taking time out of their busy Saturday to spend it with us.  Thank you, each one of you made it special day for all of us, especially Kassidy.

Hope 4 Lives organization and my friend Robin Hunt (this whole 5krun/1mile walk was her idea) helped us put on a great event.  We cannot wait till next year when we will partner with them again to plan for a bigger and better 2nd Annual Race/Walk. It was also great to have some Childhood Cancer Awareness out there, thank you to Brain Tumor Outreach Program of Southern Nevada and Teens Kicking Cancer for taking the time to come out.  Our goal, is to start getting more awareness out there about childhood cancer.  So underfunded and overlooked.  I believe that I have found my purpose....

Opening Ceremonies
Boys Scouts Troop
Melody Preth sang the National Anthem

Centennial HS Girls Cross Country did the warm up

And they were off! Kass got to blow the blow horn
One of my favorite pics, father and son at the finish line
Wow what a turnout! THANK YOU ALL!!

The day was topped off by Kyles call, when he informed that he had gotten a pr (personal record) on his 10k Run time, a time of 31:59 10k. He was pleased by the way her ran at the NCAA West Regional meet at Stanford University, he helped his XC team earn the fourth best finish in school history.  Wish we could have cloned ourselves to be able to have been there for him.  But he was with us in spirit.  We are so excited to see him this Friday, he gets to come home for Thanksgiving break.  We have missed him dearly.

Kassidy will be officially off steroids for a week tomorrow.  On Wednesday, she ran a small fever and small headache and my heart sank.  I immediately added another natural anti-inflammatory called sangre de drago and set my alarm during the night to check on her fever.  Thursday morning she woke up with no headache or fever. Thank you Lord!  Ever since then she had been doing really well.

Sunday she had another lesson with her bowling coach since bowling tryout are this afternoon and on Tuesday.  We are all crossing our fingers she makes the bowling team at Centennial.  It will be great for her to be able to compete in some kind of sport this year.  I think it will help her morale.

Today, I also got test results on the extra blood test we did on her on Friday.  They ruled out internal bleeding, YES! She's a bit low on iron, so we will add iron pills and I will start cooking some iron rich foods.  Lentils here we come...  Also, her hemoglobin has come up a bit, meaning no transfusion for now.  BLESSED!!

MRI this Wednesday and Gastric Emptying Scan this Thursday, please keep us in your daily prayers...  Anxiety is at it's high this week.

We have also setup a Kassidy's Army facebook page for those of you who would like to keep up with her progress and events there as well.

Here is the link to her page: http://www.facebook.com/pages/Kassidys-Army/271375682902038

Monday, November 7, 2011

November 7, 2011

Well, today makes 5 days till the 1st Annual Kassidy's Army 5k Run & 1 Mile Family Walk.  I have butterflies in my stomach every time I think about it and hope it all goes without a hitch.  It's all coming together and cannot wait.  We have great raffle prizes, beautiful silent auction baskets, great looking medals for those who are timed, we will have food & drinks after the race.  It will be a great day for the whole family.  Online registration will be open till this Thursday at 7:00 pm.

Here is the link: http://www.imathlete.com/events/KassidysArmy5KRun1KWalk

We will have packet pickup at Fleet Feet Sports on Buffalo & Washington by Trader Joe's.
Friday from 11:30am - 1:00pm & 4:00pm - 7:00pm
You can also register at packet pickup or the morning of the race from 7:00am - 8:15am.
Opening ceremonies start at 8:30am & Race starts at 9:00am sharp

Hope to see you all there!

Kass has been doing well overall.  We've had a few issues with her hemoglobin, these last two weeks; it has been on the borderline low side.  We will keep an eye on this since if it gets under 8.4 she might need a transfusion to correct the problem.  Hoping that's not the case!  Doctors will order some other test to test her levels of iron, vitamin levels and to rule out internal bleeding (very unlikely).

Also, last time I cleaned her port I noticed that she lost both stitches holding her catheter, this concerns us since a big tug could pull the catheter out.  I now have to measure her catheter from the insertion site to the end to make sure it's not getting longer.  If I do see change then we will have to take her to get an x-ray to make sure the port is still in the correct place and get her stitches put back in.  Meanwhile, I make sure it's properly taped down to help it so it doesn't move much.  We don't want to put her through a new insertion of a new port/catheter.


This last week she also started with bowling lessons again, to help her get ready for bowling season.  She's a bit frustrated that the backpack hinders her bowling, but we are glad she's trying.  She will have to learn to bowl with her backpack on, so it just will take a little time to get used to.
Kass getting her groove back bowling with her backpack full of medicine

Kass and bowling coach

On Saturday, Ryan and I got to attend the ITU Long Course World Championship Triathlon that a friend was participating in.   Unfortunately, the swim was cancelled since it was so cold that morning and they were afraid of possible hypothermia on the athletes.  We volunteered at T1 (transition #1 swim to bike) tear down.  Wow, that was hard work!  We got a bunch of volunteers to help us and they all worked very hard and we got it done in record time.  By volunteering at this event we were able to get a donation for Kassidy's Army from the race directors.
Volunteers for the ITU Long Course World Championship T1 tear down Rockstars

That night we took Kass with us to do some tailgating and watch UNLV vs Boise State in football.  Let me tell you we had a hard decision to make.  Do we support Ryan's alma mater or Kyle's, hmmmmmm.  Anyways, it was a great game and Kass hunged for a little bit after half time.  We were grateful that she got to enjoy the game a bit.
Us at the UNLV tailgate, notice I snuck my Boise State shirt underneath.

The best part of this week is that Wednesday we off decadron completely! YES!!!! No more steroids after this, we hope.  Please pray that Kass can go through the rest of her treatment without them.  We are not fans!!!

Thursday, November 3, 2011

November 3, 2011

It's been a crazy couple of weeks! Busy, busy, busy. But I must report that Kass is now at maximum dose on her treatment and handling it very well so far.  The best news of all is that I am starting to wean her off the decadron (steroid). Yeah!!!!!!  Finally I know!! Yesterday, was the first day and I had to do the happy dance.  So she is now down to 1/2 mg of decadron in the morning and hope to eliminate that in a week or so.  Making strides!  Just always scared of a possible seizure in the back of our minds without the steroids.

She has been attending school and doing a bit better in school.  We are thankful for that.  Everything is a little harder for her, so we take whatever she can accomplish.  This week she has also started Environmental Science instead of anatomy and physiology, so far she says it's easier.  I'm crossing my fingers, but if it doesn't work we will go to plan F  :)

Two weeks now without headaches and nausea.  Ahhh breath of fresh air! Still tired most days, but she's looking well.  I do believe our sessions at the chiropractor are helping her immensely.  Our friend Dr Paige sees her every week and works on her to allow her body to handle her treatments better, break down toxins from tumor breakdown and just give positive energy.  She loves the foot reflexology the best, I don't blame her on that one.

Dr. Rhee called this week to tell me that her biopsies of her stomach all came out fine.  The grooves in her esophagus were not allergy related and that he's not worried about them. His office will be calling me this week to schedule a gastric emptying scan, to see what's going on with her stomach not working correctly. I hope by maybe eliminating the steroid that it will help the stomach work better. Hoping!

I also found out during this time that insurance denied the PET Scan for a 3rd time.  UGH! So I called Steinberg to see how much a PET Scan would cost and they said $3,000.  Whewwww, crazy right.  Our doctor at Buryznski's told us just to wait for the next MRI to see what we see and see if we absolutely need it.  Her next MRI is on November 16.  I'm already having anxiety!

We are also started taking Kass to counseling.  We felt it would be good for her to be able to speak to someone else other than us about what she's going through.  This might help her, we thought she should try it for a couple months and see how it goes.  We just don't know what she's going thru exactly and hope that she can work through her bouts of sadness that she experiences sometimes.  She's one tough girl, but is more quiet and barely touches her phone or computer anymore.  :(

Last week she had the opportunity to sit with her team Xtreme at the showcase softball tournament they had here in Vegas.  She dressed in her uniform and went to support her team.  Ryan said she was smiles from ear to ear.  So hard for her to watch from the sidelines and not being out there playing, but she takes what she can get.  It was a great weekend for Kass and Ryan since they got to spend a whole weekend together bonding.
Getting her hair braided by Momma Sue

Best Picture of the Day!
She got to do the coin toss for one of the games.
Posing with some of high school softball friends that play for other travel teams

I got to go surprise Kyle at Fort Collins, Colorado since he was competing in the Mountain West Conference Cross Country Championships; what an honor as a freshman running D1 school.  He was so excited to see me and I as well.  I have missed my boy so much.  It was an honor to watch him compete at the college level and do amazing.  He is the 3rd fastest true freshman in the Mountain West Conference.  He came in 23rd overall and 5th for Boise State with a time of 26:13, that's an average of 5:15 mile for almost 5 miles.  Pretty amazing right!  He will be competing at Stanford for Regionals on the 12th.  Wish we could be there, but we will rooting for him on from afar.  I'm counting the days till he comes home for Thanksgiving.

Check out the link:

So happy to see each other! 

One proud mama!
Boise State XC Team, great job boys, all freshman & sophomores.

Thank you all for always keeping us in your thoughts and prayers.  We feel your support all the time and we so appreciate it.  Our lives are a little lighter because of it.

We want to give a shout out to our extended family all over, especially in Panama.  I know many of my friends from infancy have helped so much to extend Kassidy's Army there. We love the support in the prayers, thoughts, messages, runs in Kassidy's name, t-shirt & bracelets sales, donations, and fundraisers being held there.  We have met new warriors in Kassidy's Army that we have never been able to meet otherwise.  We believe this is one of the true blessings of this journey.