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!

Monday, January 28, 2013

January 28, 2013

Centennial 2013 Varsity Girls Bowling

Well, we are at 400 ml on Bag #1.  Yeah! Success! We were able to reach the lower dose in 20 ml increments every day.  Today, is the first day she hasn't felt exactly well, but it's not too bad.  Thank goodness!  We were afraid that it would be harder to wean like last time, but we were glad it wasn't so.

Now we stay on this dose for 6 to 8 weeks till next MRI!  And hoping and praying that she has no growth and then we can go lower.

Kass had a bit of an accident last Wednesday at bowling practice.  As she went to bowl for some odd reason her ball got stuck to her finger and since she was in the momentum she fell very hard on her right knee.  Instead of calling me or coming home she stayed and watched the rest of practice.
When she got home she immediately told me that she had fallen, we looked at her knee and it was already pretty swollen and had a big knot.  We iced it all night off and on and gave her advil before bed.

The next morning, she woke up not being able to walk.  She had hobbled over to Kyle's closet and grabbed his old crutches and was gonna try to go to school.  SMH!!! Her leg was extremely swollen and in so much pain that I called the clinic for their opinion.  It was so early in the morning that they instructed me to go to the ER since they are equipped with everything.  We got to Summerlin hospital after finnagling her leg, crutches, and wheel chair in my little Camry.  It was quite a funny site!

After a morning at the hospital, they did an x-ray which showed no fracture!  YES!  They gave her a schnazy knee brace to immobilize it and asked us to follow up with a pediatric ortho the next day.  When we got home she said she wished she had a catheter, it was really hard for her to keep going from the bathroom to the couch.  That night we opted to take her off treatment since it would allow for her to sleep thru the nite without to have getting up and rest her leg.  She said it was the best rest she's had in awhile.

The Brace!
The orthopedist confirmed no fracture, but could not tell if there was any ligament damage because her knee was still pretty swollen and painful.  He asked us to come back in 2 and half weeks to check again and that he would prefer she stayed off her leg completely for a week.

This bummed Kass completely because Regional Playoffs for bowling start this Tuesday.  It not only bummed Kass, but Ryan and I as well.  The one sport she can do and now cannot take her team to playoffs.  Ugh!  We were all so disappointed.

She has not gone to school and has stayed off her leg pretty much all weekend long.  Her leg seems to be much better and she has religiously kept icing and taking her anti-inflammatories.  She has been able to walk without crutches since Sunday so we will see about tomorrow.  She would like to try to play!  It's her stubborn genes!! We are hoping and praying she can.  So tomorrow we will be there to either support Bulldog Bowling or watch Kass bowl.

UNLV Rebel Women's Basketball Team
Supporting Kassidy's Army
Thank You!

Tuesday, January 22, 2013

January 22, 2013

Well, Kass did great during the actual MRI.  She took a phenergan about an hour before the scan and she felt pretty good throughout the whole test; she slept thru it.  After the test she wanted to come home and eat, which is always a great sign and especially when she doesn't throw it up.

So I woke up today feeling a nice sweet calm, it was sure a welcomed feeling.  I believe God was telling me it was going to be allright.  Waiting for MRI results never gives us a warm fuzzy feeling.  So much is riding in one sole test. It's crazy!

The MRI came back stable!  Yes!  I'm not gonna lie, with all the symptoms Kassidy has been having lately we were afraid we had growth, but we didn't!!! Praise God!!

As of tomorrow, we got the go ahead to start weaning Kassidy of Bag #1 from 500ml to 400ml, we will again do it little by little as to not cause too much havoc with her system.  Dr. Burzynski wants her to only go down to 400ml and then wait 6 to 8 weeks and do another MRI to make sure that the tumor has not grown and is stable, then at that time if it's stable we can lower it to 330ml.  He wants to be cautious since last time we tried to wean her tumor grew14%.

Also, he says her new symptoms do not correlate with a stable tumor so he would like us to investigate further with the eye specialist, endocrinologist, etc.  He does say maybe some of the symptoms could be hormone related or even steroid related.

Next scan we will also have a teleconference with Dr. Burzynski so we can discuss how much longer Kassidy will be on ANP.  This is exciting for Kassidy, she had a great day and so did we.

We also found out today that Kass made January student athlete of the month at Centennial High School for bowling and she also made top 16 in the division to go compete individually in a elite state tournament.  How cool is that!  We are so proud of her and her accomplishments.  Our true hero!

Friday, January 18, 2013

January 17, 2013

Mid December, we finally had to order a wheel chair for Kassidy.  That was one of the hardest days for me.  I called the nurse at the oncologist office and couldn't even speak, so I had to call back and was glad to get her voicemail, I left her a message with the best composed voice I could muster at that moment.  After the call, all I could do was sob in my car as I drove to one of her bowling matches and then came the anger.

I was angry because we can see that her body is deteriorating and that she cannot do the things she wants to do.  Her legs are getting to where they hurt and swell after a long week at school and she's getting where she cannot walk long distances. 

That same day when I got to her bowling match she pleasantly surprised me by bowling one of her best games.  She bowled her first 200 game!!!!!!  I immediately forgot why I was mad and couldn't be happier for her.  She was so excited! And I was thankful to God that I could be there to witness it.

Our moment of triumph ended quite quickly after we got home and had dinner and she proceeded to throw up everything she had eaten.  Dammit!  The tumor reared it's ugly head.  But even an episode of vomiting couldn't stop her happiness, she was still so proud of herself for her bowling such a great game and so were we.  It put it all in perspective the rest of the evening........

That next week she was so excited cause Kyle was coming home from college and the day after that my family from Panama was coming for Christmas and New Years.  She loves having her brother home, she truly misses him.  And we haven't seen my family over a year so we were all excited to have everyone together for the holidays.

That Saturday after Kyle came home, a friend of ours had gotten us tickets to the Maaco Bowl football game where Boise State vs Washington were playing here in Las Vegas.  Kass was excited to spend time with her brother, but that morning she woke up with the most horrible migraine she's ever had.  She was in tears!  For Kass to cry in pain is very rare; we knew at that time it had to be bad.  We spent the morning icing and massaging her head, administered a dose of IV steroid, gave her some advil, and even used our new pain MVT (micro vibration therapy) device.  The combination of all these made so the headache was bearable.  We asked her if she just wanted to stay home, but she said that the tumor would not ruin her plans.  So she grabbed her warm Boise gear and headed out the door with Ryan, Kyle, and Kaela.  She had a great time!  So glad!!!  Sigh!

Go Broncos!

We had such a great time for Christmas .  Our home was full of family from Panama and Utah, we could not asked for a better way to spend the holidays.  After Christmas, our whole family took an amazing trip to Sea World, exploring San Diego, Disneyland, Santa Monica, and LA.  The previous six years our family had always opted to go on a family trip instead of buying gifts for Christmas.  It was actually an idea that Kyle and Kassidy had come up with years ago.  Ryan and I loved the idea of eliminating the craziness of buying the right present for each other and instead making memories, they usually last longer.  Over the years, it has made Christmas a bit less stressful and truly more enjoyable and we have had the chance to go to some great places, but of course now it's a little harder with all of Kassidy's medical bills.  We are so thankful to my aunt and uncle for gifting us such a great trip this year.  We are truly grateful to them!!!

Family at Bellagio Christmas Gardens

Sea World!

Kass and Kyle trying their luck at ring toss


New Years Eve at Downtown Disney's Jazz Kitchen

Chinese Mann Theater

Santa Monica

Cars Land
After we were back to real life and the family was all gone, it ended being a very hard week for all of us.  Through this cancer journey you get to meet other parents and children going thru childhood cancer. We keep in contact, console each other, ask each others opinions, keep up with each other stories and struggles.  Well, that week we lost three children who had been courageously fighting; Amelia  who was fighting a DIPG brain stem tumor, Chris who was fighting an ependymoma brain tumor, and Micah, fighting a brain stem ganglioglioma (same tumor as Kass).  We were devastated to hear the news of all three passing all in the same week.  I could not imagine the pain these parents feel, the emptiness that's left in their lives.  My heart, my prayers, my deepest sympathy goes out to each of them.  I hope God can heal their hearts from such a big loss.

Also, that same week Kass was having more troubles with saliva issues where she has been choking more while sleeping, more pain in her extremities, more nausea and her right eye has been doing funny things; all this freaks us out and makes me think that the tumor is growing.  Of course right before our MRI next Monday the 21st to give us more anxiety.   Ahhhhhh!  

Meanwhile, also Michael who is fighting medulla blastoma and  Easton, Bishop, and even Amber who too have the same diagnosis were struggling as well with oxygen problems, seizures, migraines.   It's so hard living in fear for your children's life!!!  Sometimes feeling helpless for your own child and those of others going thru the same struggles.  I say it's not fair!!!  Times like these is when I ask God to please help me believe that our children's struggles are not in vain and to give us strength to keep putting a foot in front of the other everyday no matter what the day brings.

This week and next week we have all kinds of doctors appointment for Kass.  We would like her eyes checked, her monthly checkup done, MRI completed, chiropractor and be seen by her local oncologist.  We believe it's imperative to do a sleep study to make sure Kassidy's level of oxygen are not dropping too low at night because of her swallowing and saliva problems.  Hopefully we can talk the insurance into believing the same.  Also, Kass will be seeing the eye specialist to take a look at the back of the eye to check the problem we are seeing with the eye and of course the dreaded MRI to check on the tumor itself.

We are hoping and praying for some good news this next week.  Kass reminded me that if she has stable tumor she would like to start her weaning from the medication.  I hope we can do that soon too.  We are crossing our fingers!

Will keep you posted on MRI results!  Prayers please!