October 22, 2011

Well Maggie Lillis from the Las Vegas Review Journal, The View, wrote a great article on Kassidy and all the great support we have gotten from all you and the upcoming events last Monday.  Check it out!

Here is the link so you can read it:

http://www.lvrj.com/view/kassidy-s-army-comes-to-aid-of-teen-diagnosed-with-tumor-132034163.html

So great to have an army behind us to help us through such a hard time.  We could not do this without all of you.  Vegas people have big hearts! Those of you that time and time again show up to support, we love you!

This Tuesday, Ryan and I had the appointment with the psychologist to go over Kassidy's tests results.  They went over some of the things that they feel the tumor has affected like her cognitive & processing skills.  They made suggestions of things we will need to change in her 504 plan for teachers to implement to help her make it through school better.  Ryan and I took it a bit hard since we don't know if these skills will ever come back.  We just don't know.  When I spoke to my aunt she reminded me of the importance it is to look at that Kass is functioning pretty well and she's able to do many things still, that we need to focus on that.  It's just hard to watch her deteriorate in some areas.

Thursday we were able to meet with all her teachers but one.  Andrea from Nevada Childhood Cancer was there for support and to let the teachers understand the psychologists suggestions for the 504 plan.  All her teachers were accommodating with the changes, but we have chosen to take Kass out of anatomy & physiology honors, she's just too far behind.  We most likely will move her to another science class.

Also that afternoon I got a call from Steinberg telling me that insurance has denied the PET Scan, that our doctor has to call the director of our insurance to appeal it.  UGh!!!! So the fight is on.

Friday, was endoscopy day.  I had to take her off treatment the night before around 11:00pm, so she missed 3 doses of her treatment since she could't eat or drink anything 8 hours before her procedure.  She woke not feeling well at all since when she's off treatment she feels odd.  We arrived at Summerlin Hospital around 8:30 and she was taken back around 9:30, the procedure only took 30 minutes.

Dr Rhee came to speak to me and showed me pictures of Kassidy's esophagus, stomach lining and bottom of her stomach.  First, the esophagus showed signs of some kind of allergy, the stomach lining showed signs of gastritis areas where it looked like raw meat, poor kid, from the dang steroids, and the kicker, her stomach was practically full.  He asked me when was the last time she had eaten and I told him 6pm the night before.  He noticed that her stomach is not pushing the food through like it should so her food is staying in her stomach for a long time.  He said he even had to suck out some to be able to see with the scope.  He would like to do another test that test how long it really takes for her food to move through, hopefully we will have more answers then.  No wonder lately, she hasn't been too hungry and has even threw up once immediately after eating, but not feeling dizzy like in the past.  Almost feeling better after.  I'm hoping that the tumor hasn't affected that area of nerves, since her brain stem control the non thinking abilities of the body it could be a possibility.

Kass in recovery after her endoscopy, did great just a bit groggy.

Today, was garage sale day.  My neighbor Cindy decided to take it over for me since we haven't had time to breathe lately.  She did a great job and we had an amazing amount of volunteers and a great turnout. We even had Channel 5 news show up and did an interview on Ryan & Kassidy, keep an eye out for it on the 10 oclock news tonight.

Channel 5 news interviewing Kass

October 17, 2011

Overwhelmed and frustrated is what describes Tuesday through Friday of last week.  I have not felt that type of stress since those first few weeks when we started this nightmare.  It seems like everything has been piling up and we make one step forward and two steps back.

It has been a week, since I've updated the blog and we still do not have an appointment set for Kassidy's PET Scan.  UGH!  Every time I call I get a different story from them.  I just wish we could move forward and find out once and for all what this new lesion found in the last MRI is all about.  Waiting just makes our minds wander..... not so fun

Also, last Tuesday night we found out Kass has been struggling at school.  She's been doing well attending the 2 classes per day, but I guess missing those 3 weeks when school started was just too much and has put her behind.  This makes me so sad, since I know she's trying so hard.  Ryan spoke to her counselor and we have meeting with all teachers to discuss our options.  Also, tomorrow we go for her test results from the psychologist to see his suggestions on what we should add to her 504 school plan.  Wish us luck!

Kass also has been struggling with her morale.  The other day she asked me if I thought her tumor would ever completely go away.  I did not know how to answer! How do you answer your daughter when doctors don't even know the answer.  I can't even imagine what my baby girl really feels or what goes through her mind everyday.  I just wish that I could take it all away.

All we have, is to trust in God, he is the one in complete control.  Sometimes hard to swallow, but it's the reality of the situation.

Saturday brought a different note.  We went to help out at the Albertsons on Buffalo and Flamingo our friends Phil & Tracy who organized a Car Wash & BBQ at the parking lot area by the store.  Always such a great time meeting generous and giving people.  Our favorite was an old man who wanted to hug Kass so his good energy would rub off on her because he said he had great genes and had never been sick a day of his life.  What a sweet man!  He attributed his good genes to his native american blood.

Gotta love Cindy getting down and dirty

Thanks to the Firemen Explorer Boys

Ely & JJ they are great

When we got home that day a great surprise awaited Kass in the mail.  Her friend Amber (same diagnosis as Kass and lives in Florida) attended an FSU softball game and while she was there she had the whole team sign a softball for Kass.  Loved the light in Kassidy's eyes as she saw the ball.  Thank you Amber for thinking of Kass, she loved it.

Signed ball by FSU Softball

All the players signing it.

On Sunday, we got the chance to get Kass into the Driver's Edge Driving Program here at the Las Vegas Motor Speedway.  This is a free defensive driving program taught by race car drivers to teach teenagers on how react to scary situations.  A bit ironic since as we were there, Dan Wheldon lost his life in a Indy Car Race that was being held right next to us on the track. We listened as the cars came to a stop and life flight helicopters came to the rescue.  Very sad! Another reminder on how short life can be.  God bless his family and friends.

Kass tag

Kass learning how to control a car when it goes into a spin as you can see the helicopter at the track

Here is the link to those interested in the Driver's Edge program, they tour the country and they might make it to your neck of the woods.

http://driversedge.org/

This week I please ask you to keep us in your prayers that we soon get an appointment for her PET Scan and that everything goes well on the endoscopy she will undergo on Friday.

October 13, 2011

I would like to ask a favor, to please sign this petition to help make available antineoplaston therapy to all in the near future.  By signing this petition it allows Dr. Burzynski go into the last phase of clinical trials so once and for all the FDA can approve this amazing drug for all those fighting cancer.  I know you probably feel that it will never happen to you, but that's what we thought 4 months ago.  Please take 10 minutes to setup an account and confirm your email.  Thank you in advance! Here is the link:

https://wwws.whitehouse.gov/petitions#!/petition/antineoplastons-cancer-drugs-fda-trials-1995-results-publicly-audited-congress-gain-final-fda/M1hH28lk

October 11, 2011

A friend posted this picture the other day. It immediately reminded me of what we've been through the last 4 months.  It's been a crazy ride, but it has made us all stronger in every way.  People mention how hard it would be for them if they were in our shoes, but when you are in the situation you only have two choices; fight or give up.  We choose to fight for Kass, monetarily, physically and emotionally.  We will do what we have to do to get her better.

Sometimes it's so hard to explain to strangers that your daughter has the Big C.  Cancer, such a dirty word.  It took me awhile to actually be able to say it.

I do mostly admire all that Kassidy has endured, given up, and experienced, but still has time to smile. My girl is being tested for some reason, but I'm proud of how she's dealing with it all.  Some days are good and some days are bad.  But she's doing a hell of a job.

Lately, Kass has been doing well.  No headaches, nausea, she looks better and is even handling the dose changes well.  Thank you GOD!  It's a breath of fresh air to see her look more alert and even feel better.  School has been going pretty good for her.  The 2 classes per day seem to be the magic ticket, she's tired, but not exhausted like before.  I have been increasing the doses every 3 to 4 days depending on how she handles each.  We are 410ml in bag 1 and 40 ml on bag 2.  I'm hoping in two weeks we can be up to the maximum dose again.

Haven't seen her pet Lala in awhile I think Lala appreciated it!

We feel so much less stress when she's things are going well.  Didn't realize what a mess we were weeks before until I read some of my previous posts.  But I guess this ride is just gonna be like that.  There will be ups and downs and we will just take them one at at time.

Last Tuesday, we went to help out feed the hungry at the Las Vegas Rescue Mission just to start paying it forward.  We hope to little by little be able to do this in the future.  We are indebted to many of you and want to somehow balance out amazing acts of kindness we have received from all of you.  I think it was great for Kass also to see that others struggle in different ways.  At that moment, she forgot about her own problems and focused in helping others.  One of the greatest gifts about serving others.

We had another appointment with the gastro doctor and we told him since she's been doing better with her stomach I might want to cancel the endoscopy for the 21st of this month.  I don't think it's necessary to put her through that if it's she's not having the bad stomach aches.  We have till next Monday to make that decision.  Dr Milne gave her some drops to take that coat her stomach and we changed her to prilosec to help her protect her stomach better while taking the steroid.

Ryan teasing Kass at the gastro doctor's office

I love this pic!

Still fighting with insurance about the PET scan we need to schedule to check Kassidy's new lesion on the right side of her cerebellum.  The PET scan will determine if it's a new active site or not.  I'm getting a big ansy to find out soon.  Hopefully tomorrow I can finally make the appointment if insurance has approved it.  Please keep us in your prayers that they have and it's not an active site and just part of the breakdown of the tumor.

Ryan stayed home with me on Monday to help me out organize and pay some of the medical bills. Ugh, not so fun, but he helped me get caught up quite a bit.

I've been so busy getting all the details ironed out for Kassidy's Army 5k Run & 1 Mile Family Walk on November 12th.  Wow, never new all that went in planning an event like this.  Special Event Permits, right of way permits, insurance, barricade company, cops to direct traffic, park reservation, timing company, tshirts, medals, raffle prizes, ha a mouthful right!  Well, we are getting closer and I think it will be a great time.  Please help us spread the word on this event.  Our goal is to have at least 200 participants.  Families are welcome. The race/walk start at 9:00 am, but make sure you register early before the fee goes up.  Here is the link:


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

October 3, 2011

As September comes to an end so does Childhood Cancer Awareness Month.  I cannot wait for the day when our gold ribbon (Childhood Cancer Awareness) and grey ribbon (Brain Tumor Awareness) are as well known as the pink ribbon we see everywhere.  I hope that I have helped make you more aware about childhood cancers and the need to make the public aware.  Please decide to help somehow with your local organizations.

Here is a link of what a parent of child with cancer feels.  Please read:

http://www.facebook.com/notes/melissa-forthegold-upchurch/what-a-child-with-childhood-cancer-deals-with-after-treatment/2176046193553

The last week gets an A.  Kass has made it a whole week of school.  Yes!  Funny, how this small accomplishment has brought us such joy this week.  Not only did she make it, but she felt better all around even with us increasing the dose of her medication again.  This time I have chosen to increase the dose very slowly so it doesn't affect her too much.  

Kass and I helped out with packet pickup at McGhies Ski & Bike Shop for the LiveStrong Ride on Thursday evening.  What a great opportunity to listen to riders talk about who they were riding in "honor of", in "memory of" or even survivors.  Especially when total strangers would say they were riding in Kassidy's honor.  So very touching for me, every time I heard it, I would get a knot in my throat.  Cancer, affects so many peoples lives, that it's eye opening.

Did you wear your yellow on Livestrong Day 10/2/11?

The day of the ride, Ryan and I woke up very early to setup the booth with the help of our friend Elizabeth.  After we watched all the riders leave with anticipation of their perspective rides, I left to go get Kassidy's medication ready and bring her back a little later so she could make it till 1pm without tiring too much.

We got to meet Miss Nevada after we setup the booth!

This said it all!

And they were off!

When we got back, riders started arriving.  We sold bracelets, t-shirts, raffle tickets and even received donations.  It was a bit slow, which allowed to catch up with some friends that came to help, which by the way we appreciate so much.  It was nice to have the company and the support.  You are all great friends!  But all in all it ended up being a great day, but we were beat afterwards.

Some of the gang that came to support!  Thank you, even to those who were not pictured.

Raffle Prizes!

Kass did the honors!

On Sunday, Kass got to go and finally redeem her birthday gift from us.  She took a couple of her girlfriends to the Never Shout Never Concert at Mandalay Bay's House of Blues.  So glad she felt good enough to do so.

Alex, Kass & Ash. Taylor came later.

Today we had an appointment with a psychologist for Kass.  We believe we need to check to make sure the tumor has not affected her in ways we don't know about.  The psychologist made intellectual assessments which took almost 3 hours.  We hope to have those results soon to see if we need to make changes to her 504 plan at school.  Poor girl was beat afterwards, she went to bed at 7 tonight!