Kassidys Road to Recovery

February 19, 2012

2012-02-19T11:37:00.000-08:00

It's been another challenging week. On Tuesday, Kass woke up having troubles with her right eye. She couldn't really open it and her pupil looked a little funny. Thank goodness it only lasted a couple minutes and it went away, but she did say it had happened at softball practice the day before. It hasn't happened again that we have noticed so the clinic said to just watch her, but if her symptoms persist that we may need a scan.

On Thursday, she woke up a little flushed, but no fever so she decided to go to school since she felt fine at the time. On my way to the Make-a-Wish offices to do a little visa paperwork for our trip, I got a call from her saying she wanted me to pick her up from school because she was dizzy, throwing up and just didn't feel well. My poor baby girl!

When I got there she was having a hard time walking, very sensitive to light, dizzy, and looked so pale with dark circles under her eyes. I could not understand how her whole persona changed so fast in a matter of two hours. She told me she felt weak like the time her hemoglobin was really low.

So, I decided to get the clinic to fax a CBC order directly to the Quest lab on Burnham so we could wait for immediate results to see if we needed to go to the hospital for a tranfusion. :( I also was instructed to give her a dose of decadron. We went home because she had to throw up, but I actually got her to eat a little soup a bit after so she could take her dose with a little something in her stomach. Thank goodness she didn't throw that up.

After her labs were drawn we waited for the tests results of the CBC with her laying down in my car and I got the idea to call Dr. Milne so he could help me keep her hydrated thru treatment since she didn't really want to drink too much water because it made her nauseated and I was afraid with her still being on treatment it would just dehydrate her and land us in the hospital that night for fluids. So, after we got her test results showed that her hemoglobin and other levels were in normal range. Yipee!!! So we drove to Dr Milne's office. He gave us a bag of saline infused with a little calcium and potassium since the cbc showed she was a little borderline to give to her to help her keep hydrated and make her feel better. YES!!!

I infused the saline in between her treatments until the bag was gone which took two doses, but by late that night she already had color back, she had not thrown up since earlier that afternoon and things seem to be better. I did keep her from school on Friday so she could rest. She slept all day! I guess her body needed it.

Still to this date we are not sure if she was fighting the flu, which could be very possible since it has been going around or just tumor breakdown or tumor growth which both cause brain swelling. I guess we will know better on the next MRI.

Saturday, she finally looked & acted like our Kass again. She wanted to be naughty and have wings. So we decided to comply with her wish. She always eats pretty healthy, but sometimes we have to allow her a little cheating room. On the way to the restaurant she said she didn't feel good again. Oh man, what the heck!!!

Ryan looked at her pump and the stupid thing had not administered her dose, the bags were full. ARE YOU SERIOUS!! Another pump bites the dust, we thought. So Ryan did a couple tricks with it and got it going again. At the restaurant it only took 30 minutes and she already looked better as the dose infused cause of course she didn't want to come back home. I think she was having a little cabin fever. She even looked better after she ate so when we got home we thought we were out of the woods and the pump had just been possessed for one dose.

Wing night accompanied with our friend Sandy

We weren't so lucky! At her midnight dose, the pump decided to flash system error 6.3. Oh geez, here we go again, have to go ANP ghetto style. Nope, we didn't have enough tubing to do so because we had used the last one to infuse her with the IV fluids on Thursday. Ahhh how did I miss that!! So, Ryan went into McGyver mode. We still had the old pump here at the house so he took some parts from the old one and mismatched it with the current one. Halleluyah, we were doing the happy dance.!!!

He then took the first night dose shift and checked every 30 mins making sure the pump was doing it's job and I took the second shift, but I cheated I decided to sleep right next to her and that way hear for it until her dose was done. So far this morning it has only beeped once, but has worked thus far.

We do know what this means. We have had it with the refurbished pumps; three pumps in three weeks has not been fun. This week we will have to figure out how we can get briefed on the new pump whether it be by skype or if I have to go to Houston for a day.

Please keep us in your prayers that we can figure out the pump situation so Kass can stay on treatment and that her symptoms go away. She still is having a bit of trouble walking, she wall surfs, but we are happy with the improvements and that we have avoided the hospital.

February 12, 2012

2012-02-12T12:48:00.001-08:00

On Monday we had a new pump, but by the evening it was beeping saying door 2 open. Poor Kass and I didn't sleep much on Monday night either since the dang pump beeped about 8 times during the night. In the morning, I called the clinic frustrated and they told me that another new pump was on it's way and that they would send me a new manual for me to look over on the new pumps.

I really don't want to have to go to Houston to learn the new pump, but if this 3rd pump keeps giving me troubles I might just have to. These pump that I keep getting are refurbished pumps and since they are smaller and run by double A batteries we've been hesitant in going to the new pump. The new pump requires different tubing, slightly larger, and must be plugged in at night to recharge. This would mean Kass would have to be on an extension chord at night. Not so fun! So far this other pump has been working ok, keeping our fingers crossed. Not a fan of the drip system.

Also, that evening I received a phone call from Nevada Childhood Cancer Foundation (NCCF) letting me know that Kass had been chosen as one of the 5 children to have a special meet & greet with a very famous sports celebrity, but it would be during school hours and they could not tell us who it was because of his high profile.

Ryan and I thought about it and just said "You only live once"! So we let Kass play hookie on Tuesday. Kass & I arrived at Sunrise Hospital Peds floor activity room and waited. Kass was so excited and she didn't even know who was coming. We waited about 30 minutes and in walked Tim Tebow and some of his team line men. What a great surprise! He spent time with each child, took pictures, and signed autographs. How nice to have a sports celebrity doing something good for the world. He has definitely made me a fan.

Kass & Tim Tebow

With some of the Denver Broncos Line Men

A group shot

After we were on our way home I asked Kass if it had been worth it skipping school for the surprise and she said: "Absolutely". It was a good day.

Wednesday, Kass went to softball intramurals to help out. Coaches nominated Kassidy as another coaching member. She has been working with the catchers, getting them ready for softball tryouts. She has been catching for so many years that she has a vast knowledge of drills and workouts. Kassidy was suppose to be Centennial's starting catcher this year and unfortunately she will not be able to play. So she's doing the next best thing. We are so proud of her for making the best out of the situation. Plus she has a group of amazing coaches that are so understanding and supportive.

That day I drove down to the fields to change her medicine bag and I did notice she was having a hard time speaking. I asked her how long had she been having trouble speaking, she said since the morning. I asked her to please come straight home after practice and by the time she got home her speech had improved. Whewwww! Scared me a little.

When Ryan got home, he immediately wanted an MRI. But after more pondering we decided that since her symptoms have improved that we could be patient and wait till March for her next scheduled MRI.

This Saturday Kass also started bowling leagues. She will be bowling on Saturday mornings. She wants to be better for next year season and since softball doesn't conflict, she wants to improve her game. Ryan & I are starting to really enjoy the sport and never knew it could actually be pretty exciting. She and her team won their first league match against a group of boys. Yeah girl power!

PS. We are VERY sad to report that it has come to our attention that a boy has been going door to door representing himself as Kassidy's Army asking for donations to the Centennial area. We would never go door to door asking for donations, so please if you encounter this young man report it to the authorities.

NEW Fundraisers!!!

2012-02-12T12:07:00.000-08:00

Cooking with Kassidy's Army Cookbooks

This cookbook is a compilation of some of Kassidy's favorite recipes as well as friends. One of Kassidy's softball teammate, Jessica Cooper and her mom Vicki Cooper took this project on in June of last year. They did an amazing job of putting a beautiful cookbook filled with amazing recipes and pictures of Kass as well as Kassidy's story. We are so thankful to them since we know it took them months of working hard. Thank you Coopers!

YOU Can ORDER NOW by:

Emailing Vicki at kassidycookbook@gmail.com. She will arrange payment and shipping.

$20/each

Wild Tree Tasting Party

All of you know how important nutrition is to us. My old high school friend Amy Coleman has setup a fundraiser that anyone can get involved anywhere in the country. Wildtree sells natural, healthy and simple ingredients that are easy to prepare without additives, preservatives and artificial flavorings.

You can order online and it will be delivered to you by going on:

http://www.mywildtree.com/StephanieC/

Go to SHOP & choose Amy Coleman.

For those of you that live in Lancaster, Pa are welcome to attend the tasting party personally on

February 18, 2012 at 2:00pm

You can contact Stephanie Carzola at 717-381-1899 for more details!

Please also check the Fundraiser tab on the left of the blog for the other ongoing fundraisers. Thank you all, for your support.

February 6, 2012

2012-02-06T12:55:00.000-08:00

I am writing today a bit zombie like. We've had quite the week.

Kass was a bit symptomatic this past week, she struggled a bit with nausea. Last Sunday, she came home from an errand and quickly ran to her bathroom, which is not unordinary since she drinks so much water. Soon after, I received a call from her cell asking me to go to the bathroom to help her. She had thrown up all of her dinner. :( So I called the clinic and asked for a refill of her decadron. Decadron made her feel a bit better even though she wasn't so excited with me giving it to her for a day or two, it has made her face a bit swollen again. But I do believe she wanted to make sure she was ok for bowling regional playoffs that week.

Playoffs started on Tuesday and Kass did really well that day, but on the last game that day her whole face changed. She was so nauseated, but just wanted to finish her frames, she made it. She helped her team advance that day to the next day of playoffs. Great job Kass! The next day we played Cimarron HS and lost by 30 pins. We were so proud of all the Centennial Varsity Girls Bowling team, they had a great season and we were so glad Kassidy could take part. Especially, since she can now uncover another year in her letterman's jacket.

Kass in action.

Celebrating their 1st day win against undefeated Bonanza HS

Friday, we were so excited to go see the Hope, Strength, & Joy play at the high school to benefit Make a Wish. In the parking lot Kassidy's pump started making the sound that a hospital monitor makes when someone flat lines and it flashed system error 3.3. OH MY GOSH!!!! NOW!!!! I tried all the tricks I've learned and not one worked. UGH! We decided that we would just shut the pump off and skip the dose.

The play was amazing and uplifting, such great talent! Kass being off treatment made it so she could make it thru most of the play without going to the bathroom 500 times. Bonus! After intermission, coach Spencer got up and told Kassidy's story to the crowd. Boy, this brought me to tears. Sometimes reliving those first couple of days is so hard, but it seems like forever ago.

When we got home, Ryan & I went into a bit of panic mode. We had one and half hour before Kassidy's dose needed to start again. I had gotten a crash course from the infusion nurses at the clinic the day we left Houston to come home (truth is I was more focused on coming home that day). They told me that I most likely would never really have to do manual mode, that it didn't happen that often. Ha!!!

Thank goodness I recorded everything they taught me at the clinic to have video libraries as reference. Ryan ran to the computer to get a crash course himself and I was on the phone with Sigma calling their 24 emergency customer support line. Deep in the back on my mind, I knew this pump was done. I just knew it! Sure enough, Steve from Sigma confirmed my fears.

So, Ryan & I watched the video about 5 times to make sure we got it right. Our hearts were beating so fast, we were so afraid to get it wrong and maybe overdose her on either bag 1 or bag 2. We hung the medicine bags on a clothes hanger, figured out the new tubing and the medicine started to drip. We set our clock alarms for every 2 hours, but we really didn't sleep much that night.

ANP Ghetto Style

Morning came quickly and unfortunately there was no way we could take the clothes hanger and medicine bags with us to the Run for a Wish. Kass didn't want to miss the event and we decided that we would skip the morning treatment. Unfortunately by doing so, she was a bit pale that morning, but she insisted on coming along, her nausea was back. So glad one of our friends let us borrow a wheel chair so she didn't have to walk around, this helped.

When we got there we met the Kassidy's Army team in the middle of Town Square and it was so great to see everyone. Kassidy's Army Team raised a little over $1,900 for Make a Wish and had over 60 walkers and runners. I was so proud to help this great organization that puts smiles on children going thru such hardships in their lives. We cannot wait to have a bigger group next year and make more of a difference. Thank you all that signed up or just showed up to support our team and Make a Wish.

Some of Kassidy's Army Team for the 11th Run for a Wish

Softball Girls, love them.

Sue, Robin, & Ryan pushed Kass the whole 5k. Way to go!

1st Place Winner, Thomas Johnson, notice his shirt!

3rd Place Winner, Ian Lee, another Kassidy's Army team member. Woot woot!

Just a couple of us at the finish line!

After the race, I had made reservations at Ihop for a small brunch for some of the team members. Everyone except for Kass had knowledge of the surprise we had in store for her. Earlier in the week when I had gone to pick up our team packets at Make a Wish, I spoke to Mary at the office and she reminded me that we needed to start planning. Start planning?????? She informed that Kassidy's WISH had been granted. OH MY GOSH!!!! I couldn't stop smiling.

Last year in July we had met this young man, Justin, who participated in our Kassidy's Army golf tournament. Well he happened to work for Make a Wish as a wish granter. He and another wish granter had met with Kassidy in September to talk about what her wishes were. Never in our wildest dream did we think they would grant her first wish. So I couldn't just tell her, it had to be special.

At brunch we purposely left an empty seat to Kassidy's right. A person dressed up in kangaroo costume came and sat by her, but nobody else on the table made a big deal. She looked at the kangaroo like he had made a mistake by sitting by her. LOL!!!! He proceeded to tell her " Hey mate, would you like some shrimp on the barbie?" HA! She was confused. He finally asked her what he was, she obviously answered kangaroo and then a light lit up on her face. She said, " Oh my gosh, did I get it?" We all yelled and clapped in unison: "Australia". Tears were rolling and smiles all around the restaurant. My heart was happy! It was a perfect moment. So for Spring Break we get to be part of Kassidy's wish as a family, Kyle included! How exciting.

LOL Classic!

Oh now I get it!

Australia!

After the race we swung by Everything Medical and got one of those rollie IV poles to hang Kassidy's medicine and help her be more ambulant. When we got home we dialed in the medicine and we were back on track and even figured out the correct rate flow. It has been a pretty tiring weekend waking up so much at night, but it also was such a great weekend. Today I kept Kassidy home since the pump arrives sometime today. Our plan is to have her back tomorrow.

Ohhhh and there's Fedex. I already like this week..........

January 24, 2012

2012-01-24T22:25:00.000-08:00

What a great week thus far! Whewwwww, so glad!

It started this past weekend when Kass felt great, she had great energy and just looked good! She'd had a rough past week with finals and stress, but during the weekend was able to catch up with some school work she needed to finish for missing school from her surgery.

Monday, came with a little bit of anxiety since we had a follow up appointment with our local oncologist. Last time we met with him was last July, right after we came back from Houston. He really did not agree with the antineoplaston treatment we chose for Kassidy, but he respected our right to choose the treatment we believe is right for her; unlike our first oncologist here in town. We were suppose to go see him every 3 months, but we've been so hesitant.

Anyways, the appointment went better than what I ever expected. He was impressed with Kassidy's 20% reduction thus far, her neurological test improvement since the last time he saw her, & that she's doing well of decadron (steroid). He commented on how good she looked many times. This made Kass & I smile beyond belief. He did say he would like to see her every 3 months and if we need anything to please not hesitate and call. Ok, ok we won't wait so long between appointments.

By the time we got to the car we were dancing the jiggy and smiling from ear to ear. I'd say "mission accomplished"! Hope that we have started to pave the way for future pediatric cancer patients.

Today was another great day, Kass was back to her first bowling match since her port/catheter surgery against Shadow Ridge HS, which we won! It's been a bit of a challenge to practice bowling since her port site has been quite sore still, so she cannot wear her backpack on her left shoulder; she's been bowling holding her backpack with her left hand. But we found a sling backpack that did the trick today, that she can wear across her right shoulder. Success!

Centennial HS Girls Bowling Team (Ugh she's hiding from me)

Varsity Girls ready to Bring It!

Next week is going to be eventful for the whole family. It's Make-a-Wish week. Centennial HS is putting on a play on Feb 2nd & 3rd at 6:00pm and Kassidy will be featured as the Make-a-Wish kid for the event and on Feb 4th is 11th Annual Run for a Wish 5krun & 1Mile Walk at Town Square which our team Kassidy's Army is proudly ranked 5th as of today.

Please come and join us for EITHER event, the play is only $10 at the door & to participate for the run $22 or walk $20. Your participation will help Kassidy and other kids fighting life threatening illnesses.

To register for the run or walk click this link:
http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1000585&lis=1&kntae1000585=04D18E427AD344E98EF8DD70903261B9&team=4930563

We also would like to ask to keep Gage in your prayers. His MRI is tomorrow and we are all hoping for great news. Little Gage is the one that started antineoplaston treatment same time we did. This baby has been fighting off and on for a long time. It's his turn.

http://www.carepages.com/carepages/rockshelterdeliverer

We also want to share the great news with you about other Burzynski patients we have kept contact with:
Laura's tumor has shrunk an amazing 56%. Check out the video! Amazing! Way to go Laura.

http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura

Hannah tumor has also started shrinking and she's only been on treatment barely a month. Check out her video.

http://teamhannah.com/blog/

January 19, 2011

2012-01-19T10:08:00.000-08:00

MRI OF THE BRAIN AND CERVICAL SPINE - (01/17/12 compared with 11/16/11)
The follow-up study again shows multifocal enhancing lesions in the brainstem, mainly involving the medulla, as well as the upper cervical spinal cord, representing the patient's known neoplasm. These lesions appear unchanged in size as well as intensity of enhancement when compared with the previous study. There is stable, mild mass effect on the fourth ventricle. No new abnormal enhancement or signal is present. There is a stable, mild hyperintensity signal in the cerebellar region bilaterally. It is not associated with any abnormal enhancement. No midline shift is present. Ventricles are unremarkable. No hydrocephalus is identified. The rest of the brain parenchyma does not show any abnormal enhancement or signal.

The rest of the cervical spine does not show any abnormal signal.

The following measurements are expressed in centimeters:

T1 SAGITTAL: ENHANCED
1) Medulla, anterior                       1.7 x 0.8 = 1.36
2) Medulla, posterior                     2.7 x 0.8 = 2.16
3) Cervical spine                           4.0 x 1.0 = 4.0
                                                                        _____
                                                                         7.52 (unchanged since previous)
                                                                                 (20% decrease since baseline)

IMPRESSION:
1) There are stable, multifocal enhancing lesions in the lower brainstem and upper cervical spinal cord.
2) No new lesion is identified.

In normal people terms: Tumor is stable!

Yes, this is good news, but I am so impatient.

Today, I was reminded by Dr. Burzynski & Dr. Acelar that we were not expected to see any reduction in the tumor for at least 4 to 6 months; as we were told in the beginning. Kassidy's tumor is slow growing it will take a longer time for the tumor to respond to the antineoplaston treatment. Her labs are showing signs of breakdown which is great and that the tumor could be breaking down from the inside out and that's why we cannot see it just yet. Dr. B feels that Kassidy is responding well and that we just need to have patience.

Ugh, patience a virtue I need to work on.

I was truly hoping to hear the word "reduction". It's just so hard to see reduction, reduction, stable, stable. I just want this tumor gone forever. I want Kassidy to get her life back. I cannot lie, but my disappointment was just too much yesterday. Thank goodness for an amazing husband that comes to my rescue. This journey without him, I don't think I could bear alone. He reminded me also about what Dr B had said at the beginning. Patience Massiel!!! Deep breaths....

Kass took the news great, this eased my disillusion. She was ok with the results. Ah this kid is my hero. God gave me an amazing, strong, young lady. She teaches me everyday what it is to be persevere.

Yesterday was also another demonstration that we are not in control, God is. Thank you for the reminder, heavenly father. I sometimes forget in my state of hysteria.

So we continue treatments and everything else that comes with it. We just know that we have a kid that goes to school, participates in sports, drives; living life and on her road to recovery. We wouldn't want it any other way.

Thank you all for your prayers!

January 10, 2012

2012-01-10T18:25:00.000-08:00

What a day!!!!!!! We are all truly exhausted!!!

This morning I woke up early to get Kassidy's morning dose ready. When I went to flush her line with saline the line made a LOUD horrifying pop and she woke with a loud "Ouch that hurt". I immediately called the doctor and I was transferred to the infusion nurses to talk me through it. They asked me to see if there was a blood return on the line and there was, but when I went to flush again, I only got 2 cc of saline when Kassidy winced in pain again and a weird gurgling sound from the line. UGH! We were told we would need to go the the ER to check catheter placement & to make sure the catheter was still intact, that I would have to take her off treatment.

So to the ER we went. Thank goodness Summerlin Hospital PEDS was not busy, they took us right in. Nurses & doctors were wonderful. I didn't have to explain why we chose the treatment we did instead of regular chemo or radiation. It kinda gets old everytime we go to the ER and try to explain what & why is Kassidy on a treatment that doctors don't really know about. They immediately took Kass for an iodine test, where they injected iodine into her port and took a scan of chest. It didn't take long for the radiologist to tell me that the port was not to used and she would need surgery to replace it. NO!!!!!

Ryan came to meet us and by 11:30 we were in an OR meeting our surgeon. He explained that by looking at Kassidy's scan he was worried that the line was in such poor shape and would snap in two when he tried to remove it, that the part that goes straight to her heart would recoil inside the vein and that he would not feel comfortable going after it. Oh my gosh! So he would have to have the radiologist help fish it out. So we put trust in him and God and send our girl to surgery.

Kass before being wheeled out to the OR

While sitting in the waiting room, Kyle came over to bring us some lunch since he had been doing his workout earlier. But when he came in he came in with a limp. Oh wow! He proceeded to tell us that ever since he had kinda twisted his ankle on Friday he had been running different and that now the front of his foot hurt. Well, since his podiatrist happens to have her office at Summerlin Hospital I told him he should go see if she would look at it while we waited. She did! Love Dr. Pollitz. He had an x-ray and sure enough, a break. A stress fracture in his fourth right toe. REALLY GOD!!! What do we need to learn again???? What have we missed???? So my poor boy leaves tomorrow with a broken foot in a boot and completely disappointed he cannot participate in his first indoor track meet on Saturday. The positive, is that his white blood count came up to normal, but his iron is still through the roof about his new lab tests. Doctor suggested the he should have it checked again while he's in Boise to see where it's at then. Hopefully, he can stay away from the hematologist. Cause we are not sure we could take much more bad news.

Kyle's new boot :(

The surgeon came out about an hour and half to two hours to let us know that Kassidy's surgery had gone well. He didn't have any problem removing the old line. Thank you God! He did have to make an incision above the collar bone to be able to make sure no debris was left behind and better access. He made another insertion site for the new catheter and inserted a new broviach port catheter which is suppose to be a little thicker and a little more durable than the Hickman she had before.

When we went to the recovery she was dazed, but smiling. I love that about her. She can be in the worst place, but still smiles. We waited for her double vision, nausea, and stoned look to wear out and we brought our babies home.

The incision, the new port site, and the old port site to the right of the new one. OUCH!!

Thank you all for your prayers and good thoughts, I truly believe they helped us today through this most crazy day of all and to keep it together. We still trust that God has guided us through this path for something that someday we will learn it's true purpose. But tonight I just hold my babies close and hope that Kassidy and Kyle heal fast so they get on with what they suppose to do in life.

January 9, 2012

2012-01-10T00:57:00.000-08:00

"God doesn't give you more than you can handle" Right! We sure don't feel that way sometimes. On New Years Eve I was so excited that we had two weeks of a wonderful Christmas break. But the first Monday of the New Year came with the craziness of the hemoglobin again. Dr. Acelar called to let us know that Kass's hemoglobin was at a critical 6.4, but she was not really showing extreme signs. So, we ran to a 24 Quest Diagnostics instead of the ER since we were just not up for a 7 hour visit just to retest her labs. Her blood was taken again and in an hour we had the lab results and her hemoglobin was back up to 10. We were so elated that we didn't have to take her to the ER for a transfusion, but we were wore out and just wanted to come home. The emotional roller coaster is sometimes so exhausting.

Kass returned to school that week, but had to stay home the day after. I could tell she wasn't feeling well because she knew if she missed that day she would have to miss her bowling match that day. Her stomach was giving her troubles and she slept all day that day. Thank goodness it only lasted a day and she was back to school the next day.

Also, during the week we had the chance to go eat a wonderful 5 course meal cooked by Chef Marc from Parma Restaurant located on Buffalo & Washington. Nevada Childhood Cancer Foundation arranged for our whole family to eat at his restaurant. We had a wonderful time and the meal was amazing. Anyone looking for a good italian restaurant we suggest their caprese salad, brick oven pizza, & marsala chicken, they were all delish. Thank you Chef Marc & Nevada Childhood Cancer.

Kassidy posing with Chef Marc

On Friday before New Years, we had taken Kyle to get some routine labs that his college running coach asked us to do to make sure he's eating the right things since he's putting in some serious miles a week. Well, the doctor called to speak to him since he's now 18 they would not talk to us. He informed him that Kyle's iron levels are more than normal and his white blood count are below normal, that he would like to retest his levels again in a week before he might have to refer him to a hematologist. WHAT!!!!! Ryan & I were thrown for a loop. Like I said, does God really not give you what you can handle, because at that moment our hearts sank. Did God forget about us? Are we even strong enough to worry about the health of another child? We called his doctor back after Kyle gave them permission to speak to us. We also contacted some doctor friends and they told us to wait till the next battery of blood tests before we worried too much, so that's what we tried to do during this weekend. Early Friday morning I took Kyle to get another set of blood samples at Quest, but during the weekend we tried to stay busy to forget about the crazy week.

Ryan and I decided it was time to have Kassidy redeem her Christmas gift which we had a very hard time deciding if it was the right thing to do. She's been wanting a tattoo for the longest time, but after she got diagnosed she asked us if she could get a "Never Give Up" tattoo. It took us a couple months to ponder the answer, but we decided that it would be a great reminder for her in the future on how to live the rest of her life. That no matter what hurdle or problem she would come across in her future that she can press on and Never Give Up.

Kass & Chelsa in front of the Tattoo Place. Their family friend did the tattoo & they also paid for it.

She said it felt like getting hit by a softball many times. Being a catcher she said that was old news.

And there it is!

Kass & Jason after it was all done.

On Sunday, we also redeemed another Christmas present we had given the kids. A ride on the Fremont Street Experience Flightline or Zipline. Kids were a little nervous, but they had a great time. It was a great way to end the weekend.

Before riding the elevator up to the zipline. Looking a bit scared.

Kyle loved it & Kass glad it was over. LOL

Today, Kass had a good day. She went to school and had a bowling match against Legacy High School, who are ranked pretty close to Centennial. Well the first game was a nail bitter, but the Centennial girls won by 9 points. The other two games weren't as close and Centennial won those as well. It was great to see the girls compete so well. Kass averaged a 158 today and she was pretty happy, since she feels her medicine backpack and bowling are starting to become one.

Tomorrow we are hoping for good news with Kyle, especially since he leaves for college on Wednesday. We are leaving it in the hands of our Heavenly Father. Keep us in your prayers!

December 31, 2011

2011-12-31T14:01:00.000-08:00

Happy New Years facebook friends and family! May the new year bring you happiness, opportunities, love, peace, and most of all health.

Last day of 2011! What a year!!!! Whewww, to tell you the truth; glad it's almost over. There are just some things we won't miss from 2011.

As I sit here and reminisce the whole year gone by I have to say that it was one of the hardest years that our family has gone through. BIG SIGH! If someone would had told me last New Years Eve that our family would be tried in ways anyone could ever fathom, I would have responded "you are crazy". We were more focused last year on what to wear for our New Years Eve celebration. Wow, so different from today.

2011 had celebrations, accomplishments, new beginnings, heartaches, devastation, renewed faith in God, happiness, life lessons, strength, frustrations, and hope. All of the events that have transpired during the year have made us stronger individuals and a closer family and showed us what really is important in life.

So thankful for the friends we've made along this journey this year. Family and friends you all have been amazing on all the support we have received from all of you. We TRULY could not have done all this without you. THANK YOU!!!! TO EACH ONE OF YOU from the bottom of our hearts.

Thank you all for believing in us. It was hard to go against traditional medicine and against doctor's advice and follow what we believe is the right path and treatment for Kassidy. We appreciate all of your support throughout this. God showed us and gave us a way to be able to follow this antineoplaston method of treatment for Kass to allow for her to have a "good quality of life" while going thru treatment and hopefully after tumor is gone. This has always been our number one priority. We want to give her a chance at a full life.

So we into 2012 as our year of HOPE! I hope you keep fighting along with us and pray that the treatment keeps working.

This last week, the clinic called and informed that Kassidy's Alkaline Phosphatase (ALP) or liver enzymes were high on her blood test. This could mean more tumor breakdown or just a growth spurt. I would love to think it's more breakdown, we think she's tall enough already. :) I guess we'll find out the week of January 17th when her next MRI appointment is. We are keeping a close eye on that level of liver enzymes because if it goes 4 times the normal limit she will have to go off treatment to give her liver a break. So far it's only twice the normal amount so we continue with the treatment. Bottom line, we think good things are happening for her, just have to be patient.

Also, Ryan and I would love to have you guys help us with Kassidy's Make a Wish and also help other children with other life threatening diseases. We have made up a Kassidy's Army team for February 4th Make a Wish 5K run & 1 Mile FUN walk at Town Square. We would love to support such a great cause and also represent as Kassidy's Army. Please join our TEAM!!! Here is the link to register: http://www.RunForAWish.com/

Kassidy's New Year's resolution:
Getting rid of this tumor!

Celebrating Kass for 2011

New Years Eve 2010

February 2011

March 2011

April 2011

May 2011

June 2011

July 2011

August 2011

September 2011

October 2011

November 2011

December 2011

December 25, 2011

2011-12-25T13:18:00.000-08:00

Just wanted to wish you ALL a Very Merry Christmas!!!! We are having a wonderful time enjoying our whole family time together. We are blessed this Christmas that Kass has been feeling pretty good. She's been able to attend the Maaco Bowl Game with us, gone Xmas shopping with her brother, gone to Opportunity Village with her friends, and even gone on her first sleepover since her diagnosis at her club softball team Xmas party. God has blessed us!

All Boised out for the Maaco Bowl.

Go Broncos!

We are extremely grateful to God that he has allowed for Kass to enjoy her Christmas break. Especially when Easton and Bishop (kids with same diagnosis as Kass) are spending their Christmas in the hospital. :( Our prayers are with them! We pray and hope for strength, healing, and that they keep the faith.

About a week ago we had the chance to go get our Christmas pictures done. We usually do them ourselves, but we wanted something that would last forever and at the same time fun. Our friends the Lowerys suggested Trish and Jared McMillen from Studio ATG. What a GREAT time we had! It was exactly what we needed, a casual, hillarious time. These days we try to surround ourselves with positive energy.

MERRY CHRISTMAS EVERYONE!!!

December 15, 2011

2011-12-16T00:11:00.000-08:00

We are so excited this week that Kass was able to go back to school on Tuesday, just in time for ugly sweater day and her bowling match against Cimarron HS. The sweater she got from my closet. Shoot!!! I've been keeping that sweater knowing that it's gonna come back in style. LOL!

She missed going to school Thursday, Friday and even Monday of this last week. She had been battling headaches and nausea. :( At the beginning of the week we felt it was a flu bug and our doctor had told us that it was going around and that the bug seemed to start with a headache, but by Monday I wasn't so sure anymore.

Kass strutting her stuff on ugly sweater day.

While talking to another cancer mom on Monday, she said that she would give her son a small dose of decadron for a day and then wean him off the next day. So, when I got the daily call from the clinic I asked if we could do something like this with Kass and they suggested I give her a small 1/2 mg in the morning and night and just 1/2 the next morning, just to help with the swelling in the brain which was most likely the culprit. She felt so much better the next day!! Gosh that steroid is just a necessary evil sometimes; at least she doesn't have to be on it long term, the natural anti-inflammatories I'm giving her seem to work most of the time. They are definitely not as strong as decadron, but are keeping her away from long-term use of decadron and it's ugly side effects. We pray that all this is showing tumor breakdown! Which today I set the appointment for the next MRI on January 17. Please, please, please God heal my baby!!!

On Saturday, we had such a great time at Sam's Club on Centennial selling Bulldawopoly and wrapping gifts for donations. People were in great moods and always such a fun time with the great volunteers. Which by the way we will be there again this Saturday from 11am till 3pm. So come and get your Bulldawgopoly game for Christmas and your gifts wrapped!!! We are so blessed that so many businesses have been so supportive throughout this ordeal.

The only problem we've had was with Cold Stone Creamery on North Durango Drive in the Kohl's shopping center. One of our friends spoke to the manager and he verbally approved a fundraiser for Kass which was held the night of the Centennial Homecoming Game. There was a pretty good attendance of our friends, family and Centennial students, but when it was time for us to pick up a check the owner told our friend who setup the fundraiser that it had NOT been approved through him first so he was not going to pay. WOW!!! We were so shocked and disappointed, especially since it used to be one of our favorite places for ice cream. So many people even came to support Kass that night despite of the craziness of Homecoming. Oh well karma is always around the corner.

We are so happy to have Kyle home from college for a month, he came home Wednesday early afternoon. He was scheduled to come home Friday, but he finished his exams early and just wanted to be home. He finished his semester with all A's, we are so proud of all his accomplishments. We changed his plane ticket and here he is with a smile and great stories. He's such a breath of fresh air here at the house. What a beautiful feeling it is to have all of my children under one roof just in time for Christmas.

December 8, 2011

2011-12-08T20:09:00.000-08:00

Christmas is around the corner and it's been so hard getting in the Christmas mood this year. We have nothing up, and usually by this time our house is completely decorated, lights are up and most shopping done. So we decided to take part in Las Vegas Great Santa run/walk this year. This fun run/walk is held the first Saturday of every December and it's held to try to break the World Record for the most Santas in one place. I guess Ireland always beat us, but we wanted to help the Opportunity Village cause and bring in some Christmas spirit into our lives. Nothing better than getting you in the Christmas mood than being around thousands of santas and happy people.

The gang at the Las Vegas Great Santa Run

We've had a pretty good last week since Kassidy's hemoglobin was a bit higher last Wednesday and she had been feeling better. The day of the walk it was freezing so Kass decided to wear Ryan's big thick bulky Santa suit, it looked so cute on her and it kept her warm. We met up with the Phillips, Heinz, Lopez family and our friend Paula and walked the mile walk. It took us a bit, but we all had a great time. It definitely brought some joy into our lives. What a fun event!

Kass was so tired after the walk.

On Tuesday, Kass called me from the nurses office and said she was not feeling well, she felt nauseous and the nurse said she looked flushed. She didn't want to come home since later she had a bowling match and if she came home she could not participate. My goodness this kid is stubborn! She's just like her dad. SHHHHH!!! So I told the nurse to please let her rest and sleep for awhile and to call me to see how she felt in an hour. After 45 minutes she said she felt much better and her nausea had passed and went back to finish her day of school. She's my tough fighter! Her strength is amazing.

This week we have also had pretty good hemoglobin reading so we hope these drops levels of hemoglobins are issues of the past. Hoping! Starting next week I will only need to draw Kassidy's blood twice a week instead of three times a week. We are happy about that. I think it will help her hemoglobin levels as well. The clinic has added iron supplements and vitamin C to help her body absorb iron better. These seem to be helping some, plus I am cooking iron rich foods like crazy.

Today she stayed home because she had a little bit of a headache. NO!!!!!! This always scares us because it can be swelling of the brain from breakdown of the tumor. But my gut tells me she's just fighting a little bug. It is going around at school. We are very fortunate that thus far she's been pretty healthy. She's had bowling three times this week and after every match she comes homes and passes out, so I believe she does need some rest as well. I didn't mind spending the whole day with her. Most of our morning was spent cuddling in my big bed. I'd say it was a great way to spend mother's day. Today is mother's day in Panama. Happy Mother's Day to all my paisan friends and family!

I do ask a favor to please keep two boys in your prayers as well.

Gage is a boy we met in Houston at the Burzynski clinic, he started treatment at the same time as Kass. Gage is 8 years old and has been fighting since he was 2 years old. His tumor from his spine has disappeared, but he's had more tumor growth in his brain and the doctors are baffled because his labs are showing tumor breakdown. Gage needs your prayers to guide his parents and doctors on what the next step is for Gage. This sweet boy has had a long battle and I believe it's his turn for a miracle.

Gage's blog: http://www.carepages.com/carepages/rockshelterdeliverer/updates/3189981?client_code=tch&ipc=mur

Also, around Halloween time I got a call from a frantic mother asking what kind of treatment Kassidy was on. This boy Jaxon is 10 years old and from here in Las Vegas and in February they found a brain tumor and he had surgery, chemo and radiation and again the tumor was back. I could feel his mother's anguish, that feeling of despair we've felt before when we first found our the devastating news about Kassidy. I shared all my knowledge with her and she said that it was funny how the Burzynski Clinic kept coming to mind and that she knew that that's where she needed to take Jaxon. Well, they started treatment last Monday, but another MRI & Pet Scan were done when they arrived and tumor has grown again since his surgery this November 3rd. That's a little over a month! Please, this boy not only needs your prayers, but your monetary help. His parents are devastated and they need a healing miracle as well.

Jaxon's website: http://strengthforjaxon.com/

Jaxon's facebook page: http://www.facebook.com/StrengthforJaxon?sk=wall

November 29, 2011

2011-11-29T09:22:00.000-08:00

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!

November 27, 2011

2011-11-27T21:02:00.000-08:00

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.

November 19, 2011

2011-11-19T22:12:00.000-08:00

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.

November 16, 2011

2011-11-16T21:40:00.000-08:00

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!

November 14, 2011

2011-11-14T12:16:00.000-08:00

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!!

RACE RESULTS HAVE BEEN POSTED:
http://elementalrunning.com/2011/11/1st-annual-kassidys-army-5k-results/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ElementalRunningTraining+%28Elemental+Running+%26+Training%29&utm_content=FaceBook

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

November 7, 2011

2011-11-07T21:05:00.000-08:00

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.

SIGH!!!!!!!!!

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!!!

November 3, 2011

2011-11-03T21:30:00.000-07:00

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:
http://www.broncosports.com/ViewArticle.dbml?SPSID=48538&SPID=4063&DB_LANG=C&DB_OEM_ID=9900&ATCLID=205324618

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.

October 22, 2011

2011-10-22T17:27:00.000-07:00

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

2011-10-17T23:06:00.000-07:00

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

2011-10-13T17:39:00.000-07:00

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

2011-10-11T21:20:00.000-07:00

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

2011-10-03T22:51:00.000-07:00

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!

September 27, 2011

2011-09-27T22:16:00.000-07:00

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

2011-09-26T07:57:00.000-07:00

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

2011-09-22T22:16:00.000-07:00

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

2011-09-20T08:39:00.000-07:00

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

2011-09-19T00:01:00.000-07:00

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

2011-09-13T09:19:00.000-07:00

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

2011-09-08T21:43:00.000-07:00

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

2011-09-06T18:07:00.000-07:00

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

2011-09-02T10:48:00.000-07:00

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.

August 31, 2011

2011-08-31T23:35:00.000-07:00

Well, I forgot to mention that Kassidy is now on natural anti-inflammatories as of last Friday after we met with Dr. Milne. We have decided to add Kaprex and Arthro-Complex with Boswella to start acting along with decadron until we completely wean her of the decadron. We will start reducing the dose of the decadron this weekend by 1/2 mg per week until she no longer is on it. Let's cross our fingers and toes that the natural supplements work strong enough to keep the swelling down of the brain so she has no seizures.

Kass's Medical Supply Closet now all done! BTW this a month's supply.

Today, was a bit of a sad day since all of our family has gone home now. It was so nice to have them with us for support. But, I did stay busy today organizing Kassidy's supplies so they can be a accessed and inventory can be done much easier every day. I also made sure we start scheduling all her doctor's appointments and school functions; all the fun stuff that comes with the beginning of a new school year.

2 week supply of Medication!

Her medication, I will keep in the boxes that they come in every two weeks since we go through it pretty fast and it's not the best smelling stuff. We noticed the strong smell when we first toured the Burzysnki Clinic that first day of our appointment, not realizing that smell would permiated through Kass and now the house. We no longer smell it, but the first few days of infusion we did. We now associate smell with the smell of Hope & Wellness.

Starting tomorrow, commences Childhood Awarenes Month! Please pay attention to these statistics, it can even happen to YOUR child.

- 46 Children are diagnosed with cancer every school day
- 7 Children die from cancer every day
- Chilhood cancer kills more children than all other diseases combined (AIDS, Cystic Fibrosis, Diabetes, etc)
- One person out of every 330 will be diagnosed with cancer before they are 21
- On average 1 in every 4 elementary schools has a child with cancer. The average High School has two students who are current or former cancer patients.
- On average the treatment of childhood cancer is two years.
- Cancer treatment in childhood causes effects for the rest of the life of the child and makes the child at a greater risk of developing cancer a later age.
- Childhood cancer is very underfunded.

Please keep in mind those children who are now fighting and those who have lost their battle with cancer this month.

Here are friends of ours that are battling now, please keep them in your thoughts and prayers.

Brain Stem Ganglioglioma (same diagnosis as Kass)

http://www.caringbridge.org/visit/bishopmikaelian
http://www.caringbridge.org/visit/eastonmurdock
http://www.caringbridge.org/visit/amberhoward

Neuroblastoma:

http://www.caringbridge.org/visit/michaellandis

August 30, 2011

2011-08-30T18:18:00.000-07:00

First day of school! Always a day to reflect on your children being one year older and one day closer to adulthood. Time really does fly! It feels like yesterday that Kass was in kindergarden, the years have passed so quickly.

The night before Ryan & I tossed and turned all night long with anticipation for the day. Not knowing how she would do with a whole day of instruction, peers and teachers. The night dragged on and every few hours either him or I would look at the alarm clock. When we finally saw 5am we both jumped out of bed ready to take on the day.

We left for school at 6:20am, but not before our picture taking session we always do the first day of school. It was very different since Kyle is at college and she was not a happy camper with me taking her picture. She now hates the way her cheeks look from the decadron. We keep telling her it's a temporary side effect she will have to endure, but it's hard for her high school/teenager to comprehend.

1st day of Junior Year not so happy with my picture taking.

On the first day of HS she had to attend all periods even she has 1st and 2nd open periods in her regular schedule. This meant I had to prepare her medication and draw her blood at school. This was a challenge in itself to make sure I didn't forget any of the supplies. I was fortunate enough to have spoken to the nurse prior and I was able to use her office to do everything. Kass went to her homeroom and got her instruction and then had her open periods so I was able to get it all done. Her day went smooth until her student aide period, the teacher who she was suppose to work for told her he didn't need a student aide, that she would have to go back to the counseling office and change it for another placement. She did and in the craziness of the day, she was given PE aide. Really!!!! Oh my gosh, when she told me I almost came unglued. Her student aide period is suppose to be a rest period..... Anyways, today I was able to rectify the problem. Mission accomplished.

After she got home from school, she was so tired she slept for 3 hours. Such a deep sleep that I had a hard time waking her for dinner. She did not have tennis practice yesterday since the courts are being refinished, I was thankful for that. Today she did go, but could not hang. It is just too dang hot in Vegas right now. Her body cannot handle the heat. I got her to understand that this may not work until the weather cooperates a bit better. She decided that she would like to go at least twice a week to support her team. I'm ok with that decision.

Everyday is a challenge for Kassidy, I'm sure this school year will bring some hard decisions she will have to make on her part, but I'm confident that she will make the right ones. We cannot wait till we can completely wean off the decadron so she can work on feeling a bit better from the weight gain, joint pain, swollen face, and everything else that comes with the blasphemous drug.

We are just happy to be where we are at and that she can actually attend school.

August 25, 2011

2011-08-25T13:19:00.000-07:00

Monday, my goodness Vegas was hot! Kass & I headed to tennis practice around 12:30 since practice was from 1 to 3pm. Ugh, hottest part of the day. Gotta get the kids used to practicing at that time since school starts next Monday and that's about when practice is going to be anyways. Kass had a bit of difficulties with the warm up so she sat down for the rest of it, then she tried to hit a couple balls, but she felt dizzy and had to sit again. She was able to hit for about a good 45 minutes, but eventually she decided to go inside the club house in the air conditioning and wait with a friend who was having difficulties as well from the heat. I know that this is very frustrating for her, the fact that her body just cannot perform to the level that she was used to, but I marvel at her determination. We feel that she needs to learn for herself the limitations of her own body, obviously with a little guidance. It's an important part of growing up to let children make some of their own decisions to learn consequences of their actions. I truly believe it makes them better adults.

The meeting with the counselor went well to implement a 504 plan for Kassidy's junior year. We decided that she would go into school late to allow for more rest and more time to prepare her medication for the day. She will only really take 4 core classes (US History H, World Literature H, Pre Calc H, &Anatomy/Physiology H) and 2 electives (Foods & Office Aid/Rest Period). We decided that it would be better for her to take H honor classes instead of the AP (advanced placement) classes she was registered for since they require more of the student. Unfortunately, because of her schedule she is not able to take orchestra, which is a little disappointing for her. She has played the violin since she was very young and loves competing to be first chair whenever possible. We will miss going to her orchestra concerts.

I also met with the nurse to explain Kassidy's situation and what steps we need to take in case of a seizure. She was very helpful and helped me learned of some other 504 options I should add to the plan; like allowing Kass to leave 5 minutes early from class to prevent kids in the hallway getting caught on her tubing and maybe pulling out her catheter. All in all, we feel we are getting closer to a smoother first day of school.

Tuesday, wasn't a good day at all for Kass. She wasn't feeling well at all and decided to stay home all day and rest. On Wednesday she felt better, but was still feeling a bit of chest tightness. When I went t drop off her blood sample at Quest I got a text from her saying that her chest was really hurting; so I called Marilyn at the Burzysnki Clinic and she told me that since it had been the second time she was experiencing this and it's not a known symptom of the treatment, that it would be good to take her in for an EKG, so we decided to go to Centennial Hills Emergency.

At the ER, we were taken in right away, but the waiting began when we were given a bed. An EKG was done right away which showed normal results. Blood samples were taken for a battery of tests including a D-Dimer test which showed a positive for a blood clot. :( This is always a worry since she does have the intravenous catheter that can clot at any time even if it used continously throughout the day. An x-ray of the chest was done which again was normal so then a cat scan was ordered. All these test showed no clot, but did show signs of pleurisy (inflammation of the lining of the lungs), most likely caused by the dang decadron. This can cause sharp pains of the chest. So we were given a prescription for ibuprofen and sent home 7 and half hours later.

When we got home, we were wiped. I didn't feel that tired while at the hospital, but as we both walked in at home we both felt exhausted. Stress can really wear you out. We look forward to tomorrow when we meet with Dr. Milne for her monthly checkup and talk about starting her on the natural anti-inflammatories instead of the decadron.

Kass & Thiago!

We are so thankful that we have been surrounded with family this week, since it's been a bit challenging to say the least. My aunt, my cousin and the new baby have been here keeping us company, which has helped immensely with Kass and just keeping our minds busy and not worry so much about Kyle being gone.

One day at a time!!!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.

~Eleanor Roosevelt~

August 21, 2011

2011-08-21T23:28:00.000-07:00

No matter how old, they will always be my babies.
On the way to Boise.

Well, we are home from Boise! Nobody ever prepares you for the feeling of emptiness a mother feels when she arrives back at home without one of her children. Yesterday's goodbye went really well I felt, but when we got home Kyle's absence hit me hard. Everything around the house reminds me of my boy; I know it will just take time to get used to the idea of him being gone so far away, but we are excited for what the future holds for him. While we were in Boise we got to meet his new roommate, helped him move into his dorm, watch him gets his team pictures and individual pictures taken for the cross country roster for the Boise State website and watched him run in his first collegiate race in between his own teammates. We hope the best for him, but we will ALL sure miss him.

Athlete Moving Day!

Boise color spikes issued by the school! They are sponsored by Nike!

At dinner with Kyle's roommate David and his mom.

By the way, those who were wondering, I fit everything we took with us in his dorm room! Ha!

One last family picture before leaving the night before.

Kassidy did much better in the lower dose this past week. Her symptoms started slowly disappearing as soon as we lowered it back down on Monday, she still had a bit of the chills and had a small headache the day we arrived in Boise, but they improved every day. We have even noticed that she does not have the hiccups much anymore, which is a symptom of the tumor. We didn't find a Quest Diagnostic Lab, but we found a LabCorp right in dowtown to take her blood draws to and it was quick and easy which we were so thankful for since we wanted to get Kyle settled in his dorm room that day. While Kyle went to his first student athlete orientation we decided to go get lunch in downtown Boise, while we were driving back to the hotel to change Kassidy's medication; Ryan sees a music tour bus which Kassidy and I totally missed. He said that it was some kind of Mayday something band; Kassidy went nuts, she said Mayday Parade is one her all time favorite bands. Since, we live in the moment these days, I looked up exactly what was going on that night and bought two tickets for Mayday Parade, The Cab and the All Time Low Concert. Kass and I had a great time that night, they played her favorite songs and we had great seats. Good day! We made our trip into a mini vacation for us.

Tomorrow, we have a meeting with the school counselor to figure out Kassidy's class schedule. She will definitely not be able to go to a full day of classes because she just gets too tired during the day, so we are going to see if she can have a couple classes in the morning and then she can come home and rest and maybe go back for tennis if she feels up to it; kinda like senior class schedule. We'll see what we come up with.

Also want to remind you that there are only a couple spots left on the Bulldawopoly game board for those organization or businesses that would love to advertise on it. We are planning to sell 4000 of these Bulldawgopoly games and it will be a great advertising tool for anybody. If you have any more questions on the game and how to buy a spot or if you want to put your pre-order one of the games itself, please call coach Spencer at 702-622-5801.

August 16, 2011

2011-08-16T08:24:00.000-07:00

We woke up Saturday morning to an overcast and kinda gloomy day which disappointed us since the Kassidy's Army Car Wash was going to be held that day. Ryan headed to the mall to work with other Clark County administrators at a Back to School fair to answer parent's questions for the upcoming school year and since it was Kyle's last weekend home he decided to go shooting with his friends and girlfriend. That left Kass and I, so we decided to get ready and go help out at the car wash. We needed a break from helping Kyle pack for college.

When we got to the car wash, to our surprise there were actually busy! Cars were in line to be washed and a tent was setup in front of 7-11 with Kassidy's Army goodies and kids standing at all the corners directing traffic or with donation buckets. Each of them full of energy and working hard! Especially Coach Spencer and his wife, I've never met such hard working people in my life. They directed kids and organized everything. We are so thankful for them!

Volunteers!

Basketball Girls at work

We decided to help out at the booth so Kass could sit down, she wasn't feeling as well as she'd like since that morning we had upped her dose on bag 2 per doctor's order. It rained off and on that day but people still came in for car washes. Just amazing, thank you to all those who did. It was also great to see friends we haven't seen in awhile. We spoke to more cancer survivors that would come up and share their stories of courage. The event ended being a success, we were able to raise $4,000, not bad for a rainy day.

Ms. Spencer and Kass with some of the girls at the booth

Kass & her old friend Carissa

Coach Spencer as the Car Wash Teletubby, he couldn't resist.

A Centennial football/teletubby

We left after being there a couple hours to let Kass rest and for me to return to packing and get ready for Kyle's early 18th birthday dinner and for the surprise party Megan was doing for him that evening. He will be turning 18 while at college so we felt we should celebrate Kassidy's 12% tumor reduction and Kyle's almost birthday. We had a great day!

Megan, Kyle & Kass at dinner at Carrabas for Kyle's early bday dinner

Unfortunately, Sunday was a rough day for Kass. She experienced chills, numb fingers, slurred speech, extreme fatigue, small headache. Ugh! When the doctor called that day they instructed me to check her temperature which she did not have a fever. We watched her closely that day and she pretty much slept the whole day. Yesterday on our way to Salt Lake for out first leg of our trip to Boise she was still experiencing some symptoms so I was instructed to reduce her dose on Bag 2 again to what it had been before. The doctor would like to try again later to up her dose in the future, but for now we will keep her at the same dose. She's definitely felt better since that.

That's some good packing!

The trip to Salt Lake has been a little interesting, starting from the packing. Wow did we pack too much.. Ok ok I packed too much for Kyle, but you never know what he will need. Also having to stop for Kass to go to the bathroom and preparing medication at rest stops made for a little longer trip than usual, but we arrived safe and got to meet our nephew Thiago Gael for the first time. What a beautiful baby and he's so good. Spend the evening eating some panamenian food, talking with family. What else could you ask for!

Patience

2011-08-09T18:51:00.000-07:00

"Patience is a passion tamed" Lyman Abbott

Wow, this word resonates in my head today "Patience, patience, patience". As all of you know I hastily went to Steinberg Diagnositcs to get my own copy of the MRI report and cd to see for myself without getting in my head that I do not really know how to read medical jargon and that I should have waited to speak to the radiologist first. When I supposedly read the report did't realize that small change was noted on the report. So today after speaking with the radiologist for 20 minutes, he explained to me clearly that Kassidy's tumor cannot be given a size, because there's a little bit here and there; throughout her brain stem and spine. By looking at July 1st MRI and comparing it to August 3rd he could see the most change on the tumor that was pushing on the 4th ventricle in the brain is not putting as much pressure and that other tumor in the medulla near the pons has less enhancement on the contrast MRI. That if he had to put a percentage of decrease that he would say that the tumor has decreased by 12%. Halleluyah! God is listening. What an elation, my heart skipped for joy and haven't been able to contain my happiness all day. Thank you all for your prayers, God is listening!

Some of my friends from HS from PA showing their support at the Pamper Chef Fundraiser, thank you girls!

August 8, 2011

2011-08-08T18:36:00.000-07:00

Today started as a great day for Kass, a bit hot at tennis intra murals, but she did really well at practice. She's getting stronger every day with her obvious limitations, but we are just proud that she's even trying to stay active and trying her best. Is what we've always taught our kids to do, their best is all we've ever wanted. I love this quote from Steve Prefontaine, one of the best cross country runners that ever lived.

"To give anything less than your best is to sacrifice the gift" ..... so true

Well, we really have been waiting patiently for results of Kass's MRI, I called ahead to the Burzynski Clinic this morning and reminded them that when they did their daily call I wanted details of the results. I finally received a call around noon letting me know that the imaging place here in Vegas never sent the cd with the images of the new MRI; they had faxed over the report of what their radiologist had seen, but had not sent the cd of the MRI images for the radiologist at Burzynski could see for himself as well and make his own report. OH MY GOODNESS!!!!! Are you serious!!!! So I immediately called FEDEX and sent my copy of the cd to Burzynski and told them they would have them tomorrow. I then hung up the phone and called Steinberg Diagnostics and drove myself to their place and got another copy of the cd for my records and a copy of the report findings. My hands shook as I signed my name to sign out the documents.

I practically ran to my car and shut my door and just bursted into tears. My emotions overwhelmed me at that moment and more so when I opened the envelope to see that there was no change in the tumor, but this means it's stable. I know that we were told we would not see results for a few months, but since Kass has been feeling so good lately I had a glimmer of hope. It's great news not to see growth in the tumor so I composed myself and went home to get's Kass medication ready for the next round of doses.

One day at a time, right!!!! We now wait till September for the next one.

My nephew only a day old and already with Kassidy's Army gear.

Pamper Chef & Bulldawg-opoly Fundraiser!!!

2011-08-04T16:44:00.000-07:00

Who wants to get their Pamper Chef on!!!!

Hi everyone just wanted to tell you about a Pamper Chef Fundraiser that will start now until Friday, August 19th. You may order by going online to:

http://www.pamperedchef.biz/debhileman?page=host-search-results&showId=3206081

Or you can just contact Deborah Hileman at 717-575-1123 or email her at dlhileman@comcast.net.

Curt Spencer, one of Kassidy's softball coaches will be directing the BULLDAWG-OPOLY Fundraiser!
YES a mascot based game that will have it's bulldawg touches and local businesses on it.

We will be taking pre-orders for the Bulldawag-opoly game which 100% of the proceeds will go to Kass. Each game costs $25.00 and estimated delivery of the games will be October, 2011.

We are also selling LIMITED property spots on the game for $1,000 till August 15th for any group, business, club etc that would like to advertise on the game. After that date the price will go up. Hurry spots are limited. You may contact Curt Spencer at 702-622-5801 or email me at ryanandmass@aol.com.

Prices for selling:
The person who sells the most by next Wednesday, August 10, 2011 will receive $25, a free bulldawg-opoly, and Kassidy's Army tshirt.

At the end the prizes are:
$250.00 to highest seller
$75 to next 4 people
$50 to next 5 people

10 games sold will receive a Bulldawg water bottle
15 games sold will receive a Bulldawg water bottle & Kassidy's Army bracelet
25 games sold will receive a Bulldawg water bottle, Kassidy's Army bracelet & tshirt.

The group, club, sport or organization that sells the most games will receive a pizza party & music concert.

Thanks everyone!

August 3, 2011

2011-08-03T18:30:00.000-07:00

Today, Kass was excited to not have her backpack attached to her back on the way to tennis practice. Since today was MRI day, Kass has to be off the anti-neoplaston treatment 4 hours before her MRI, so she didn't get two doses of her treatment.

At practice she started ok, but had to stop midway thru since she said she started having chest pains. As soon as she rested the pain went away, but we didn't want to push the envelope so she watched till practice was over. Marilyn, the nurse from Burzysnki that calls us everyday, told us to keep a watch on her to make sure it doesn't happen again and that it could be her body's reaction to stopping treatment and exercising. But if it does happen again we will need to take her into a doctor for further review.

As we left for Steinberg Diagnostics for her MRI, I couldn't help to feel anxious and nervous. I know the doctor at the Clinic told us not to expect much change in the tumor this early in the game, but I guess part of us would love for a small miracle to start happening already.

When we got into the MRI room we met with our technician who told us Kass test would only take 30 minutes. I had to do a double take and have him repeat the statement because she's never had an MRI that has taken under 2 hours. He also was afraid to use Kassidy's catherer to administer her contrast, which I insisted that's what it was for and there was no reason to stick her when she had a perfectly working port straight to her main artery. Well, I could't believe it, but the test was done in 45 minutes! Wow Kass and I were pleasantly surprised. As we were leaving I told them to expect us every 6 weeks and that we would be getting to know them quite well in the next couple of years.

The MRI results and report will be available on the following Monday. Ugh! I know!!! The thing I hate the most.... Waiting for very important results. Well, it is what it is so we will wait with as much patience as we can and hope for the best.

Thank you for your good thoughts and prayers today, they helped keep us calm. :)

August 2, 2011

2011-08-02T21:51:00.000-07:00

Well Saturday was definitely a success. Buffalo Wild Wings (BDubs) employees were definitely busy! According to their manager they were steady busy all day long. They sold over $5,000 in sales that day with people that came in with flyers. Coach Spencer was able to setup a table at the entrance to sell more Kassidy Army tshirts & bracelets. Again, another great night of great support from all of you. Thank you!

Now we just need a little rest. It's been an amazing couple of weeks,but we are wiped. It was so nice to take a rest day on Sunday and just enjoy the day, go to breakfast. We have so much to get caught up on and get Kyle ready to get him ready to go off to college. The days are passing us by and the day before we leave to take him to Boise State will be here before we know it.

Gave her a free day, she still orders from the kids menu.

On Sunday we also got the greatest news that my dear cousin Ari went into labor and had her baby boy. Little Thiago Gael was born around 4pm that day weighing at 8 pounds 4 ounces. Congratulations Ari & Josimar for your beautiful and healthy baby boy. We cannot wait to meet him soon.

A gift from God!

Monday came, and Ryan and I had a little of bit of nerves, first day of tennis intra murals for Kass. As I drove her to the school I had to stop my mind from thinking. What if this, what if that..... Ugh! Coach started the girls with a brief introduction and then instructed them to run 3 laps around the courts; well Kass made it almost one lap and she had to stop because of her breathing. One of the previous symptoms she had before the we even knew what was wrong. She stopped to catch her breath and continued with some other agilities; again stopping every time she felt she needed a break. She continued to do the skills, but fell twice. She just would get up with a smile and give me the thumbs up while my heart almost palpitated out of my chest. The dang decadron causes weak joints. Have I said how much we hate, this drug!!! Kass said her knees have been feeling weird the last few days, but this does not stop her. My girl is driven and we love that about her. Cancer will not keep her down!

Kass with Nicki playing doubles

Today she went back to tennis and did a little better. She has not really done much exercising for the last couple of months so she has very sore muscles. But she loves the feeling of being outside and doing something physical and that she enjoys. So we are all up for that. Quality of life is important to us!!!!!! So I will go to all the practices and games if I need to, to make sure she will be ok and fix little problems when the pump decides to act up like today. I believe we frieked out a couple tennis players today when the pump started beeping. The faces of the girls were priceless! "Oh my gosh Kass your beeping!" Just a simple fix, no biggie.

Tennis Cheer

Tomorrow we go for our first MRI since she's started treatment. Doctor did say not to expect results yet on the tumor since it's been so recent, but we can dream can't we.

July 30, 2011

2011-07-30T16:21:00.000-07:00

It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up -- that we will begin to live each day to the fullest, as if it was the only one we had.

- Elisabeth Kubler-Ross

Another person looses their battle to cancer yesterday. Rob Grimshaw, another Las Vegas resident who recently went to the Burzynski Clinic for answers. He was recently approved, but had fallen ill after his return from Houston. Rob also had a very rare form of cancer called epitheloid carcoma of the skin. Our prayers are with his family and glad that Rob is no longer in pain. Here is the link to his blog:

www.robgrimshaw.blogspot.com

Today I sit here with an empty house with a little peace and quiet. Ryan is out shooting guns with friends out in the desert and Kyle & Kass and friends are enjoying lunch at Buffalo Wild Wings aka BDUBS for the Donation Fundraiser they are having for her today. I can't tell you last time I had a moment to myself with my own thoughts; life has been a whirlwind these past two months. Even with this much time that has passed, I still feel like we are living somebody else's life, a bad dream that we will wake up from soon. Our days are mostly good, but we also have our bad days, those are the days when getting out of bed seems like a feat. Day by the day we struggle to find normalcy and some kind of routine around Kassidy's treatments, blood draws & dressing changes. It's been a little harder since Ryan is back to work, so now I have to find what schedule will fit Kass & I for the long run this fall.

Thursday, we met with Dr. Milne, the MD that will oversee Kass every month to do her physicals and didn't hesitate when we asked him about signing the 1572 form which I spoke about in the previous blog entry. What a wonderful doctor, he sees the big picture and is excited to embark in this journey with us. What a blessing! We are very fortunate to have found him, thanks to the Appelzoller family which referred him to us.

Dr. Milne will also help us with getting Kass off decadron (steroids) into a more natural anti-inflammatory. Kass in her own words about decadron "I'm not a fan!". She hates that way it makes her feel and most of all makes her look. She has gained 10 pounds and it also has given her swollen cheeks. She says she can feel her cheeks jiggle when she walks and sometimes in the evening they hurt.

A couple weeks ago I spoke to Jason Merkle's mom, a mom of a previous patient of the Burzynski Clinic, who told me when her son Jason was on the antineoplaston treatment as well and they had opted to not use steroids because of the long term side effects. That instead she used a combination of bromelain and inflavanoids instead. She also told me after Jason's treatment she also found a supplement called Boswella. According to Dr. Milne with the Burzynski clinic's approval we might be able to use a combination of those instead of decadron. Her new Las Vegas oncologist also agrees that we need to wean her of the steroids as well, which today she had her first less dose and so far so good. Again, our biggest worry is her having major seizures as the tumor starts to breakdown; that is why she needs some type of anti-inflammatory. Here is the link to Jason Merkler's story: Very promising!

http://www.burzynskipatientgroup.org/jason-merkle

On Friday was an extremely busy day trying to get caught up on everything, but in the evening we headed over to the Pursel's for the Dance Party fundraiser. It was great to see all the kids that came to support Kass and we are so thankful to the Pursel's for offering their house for the event. We had a lot of fun watching them dance and putting our moves in the mix. Indeed a good day!

Some of the kids at the dance party.

Kass with her buddies Alex & Pamela!

Tonight we hope to see you at BDUBS!

July 27, 2011

2011-07-27T20:24:00.000-07:00

What a day, yesterday! We woke up really early to make sure we got Kassidy's treatment going before we had to leave for our appointment with the new oncologist. The new oncologist that had signed the 1572 form that was required by FDA before and then the next day wrote a letter to Dr. Weaver in Houston recanting his story and wanted his name removed from all the paperwork. We were a little apprehensive to go meet with him for the first time, but we feel Kass should have an oncologist here in Las Vegas as well, just in case we will need him in the future, since our first oncologist here in Vegas no longer wants Kassidy as a patient. We found this out the beginning of this week when Make a Wish called us to let us know the reason there had been a delay on her wish was because her first oncologist no longer claimed her as a patient and he wouldn't signed the paperwork, when he had told Ryan that even if we chose another treatment plan that he would help us with the Make a Wish. Wow! We will definitely never be going back to him or refer him in any way.

We got called back pretty soon after filling out all the required paperwork, which by the way we are getting pretty good at. I can't tell you how many of those papers we have filled out in the last couple of months. We sat in the exam room for about an hour and half and then we started to feel a little antsy. At the same time Ryan was ready to go to the front office to ask if they had forgotten us, we heard arguing in the hallway directly in front of our door. There were some choice words exchanged by the doctor we were seeing and a staff member. We got from the argument that he was not so happy that we were there, since he had already refused to be the onsite doctor that would work along with the Burzynski Clinic. At that time, I told Ryan and Kass that I would give the doctor 10 minutes to come in the door and if he hadn't I would ask for my $20 copay back and walk out the door. My patience was running thin. Ryan after the 10 minutes stood outside the door and saw the doctor that then informed us he would be in 5 minutes.

When he walked in the door he proceeded to ask Kassidy's medical history with a bit of frustration in his tone. That's when I chimed in and told him we were here because his staff had called us that he wanted to meet with us, but we had already found an MD here in Vegas that would oversee Kass every month for her physicals and signed the 1572 form. That all we needed him for was to be Kass' oncologist here in Vegas just in case we would need him in the future. He then seemed to relax and agreed that there is really no conventional treatment that works on any certain person for this type of disease and that Kass is doing well and right now its probably the best time to try something out of the box that's non toxic and see if it works. That he would like to see Kass after her MRI just to keep an eye on her. We left the office in bettter spirits and surprised by the change of heart, but glad to have a new oncologist who will support us through this treatment. Thank you God! Another answered prayer.

Macayos gave Kass her own name tag! :)

Later that evening we decided to go to Macayos Mexican Restaurant to take part in the Kassidy's Army fundraiser night. My goodness, the restaurant was filled with friends, family and people supporting Kass we have never met. It was an overwhelming site to see! We sure feel loved, THANK YOU ALL. We tried to greet everyone at their tables to thank them and hope we did not miss any of you. What an amazing night, so great we ran Macayos out of rice. LOL!

Our table at dinner with great friends.

July 25, 2011

2011-07-25T13:51:00.000-07:00

To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven.

- Johannes A. Gaertner

That is exactly how we felt this weekend, like we have touched Heaven. What an amazing weekend we had! Our fundraisers definitely surpassed our expectations. Between the Centennial garage sale, car wash, bake sale,Kassidy's Army Golf Tournament & Smiths booth we raised $33,000. Just amazing! That will cover 4 months of Kassidy's treatments.

On Thursday, Smiths on N Durango allowed us to take part of their community outreach program. Kyle, Kass & I setup a booth inside Smiths to sell the Kassidy Army t-shirts & bracelets. When we got there the firefighters were outside, identa-kid (fingerprint service for kids) & Girls Scouts. Unfortunately we got there a little later than I wanted and we didn't get such a great spot, the first half hour nobody even gave us a look. But I had made flyers with Kassidy's picture and a very small paragraph about her, so my friend Lisa had an idea to stand up front of the store and handout flyers and point them towards our booth. It worked!! Many people stopped at the booth to ask Kassidy about her treatments and offer their kind words, especially from cancer survivors. Several bought bracelets and/or t-shirts. There were many, many people that simply donated. It seems like almost everyone knows someone who is fighting or has had to fight cancer and they were very generous. In the four hours we were at Smiths, we were able to raise $1600. We were very excited and want to again thank any and all that helped to make this fundraiser a success. After the fundraiser, Jenniffer, (the Smiths manager) came by the house and donated a beautiful oil painting for our auction at the golf course. Thank you again Jenniffer!!

Kyle, Kass & the girls scouts in the fire engine at Smiths.

That night we went up to Centennial to help organize all the donations and help with the new donations coming in. As we walked in thru the doors of the school, it was an overwhelming site, donations scattered from the front of the school all the way to the back and a very tired coach Spencer & Vicky trying to sort it all. We stayed and helped until the sun set and we could not see anymore to work, but we got a lot done to prepare for the 1st day of the sale.

Kass found a donated bed to crash at while we organized donations at the school.

When we got home we had to stay up and make signs for the sale and since it was already to late to go to bed and have to wake up again in an hour and half to change Kassidy's medication bag, we just stayed up. By the time we were done with changing her medication bag and reprogramming the pump it was 1:30am before we went to bed and had to wake up at 4:30am to be back to set things up for the sale. As we approached the school, we noticed the Channel 5 News van parked in front of the school. We were so happy to see that the media was going to cover the event. They initially interviewed Ryan first and then they hung around till I could go back home and get Kassidy so they could ask her a couple questions. Here is one of the videos they shot for the news:

Centennial High School hosts fundraiser for cancer victim: "Kassidy Merritt suffers from a rare form of cancer and her treatments cost $7,600 per month."

Card & Bracelet from a 5 & 6 year old boy. Cute!

As the day went on, we would see shoppers that had watched the news and wanted to either meet Kass, buy a shirt/band, support her by shopping, car wash or just came to give a donation. Our favorite that day was when a mother brought 2 cards and bracelet made by her sons who are 5 & 6 years old. How cute! Another was a mother who wanted to buy shirts and have Kassidy sign them for her and her children. All throughout the day we experienced the true meaning of giving and good works. Not only from the shoppers, but from all the volunteers, like the football team who stood out in the heat washing cars, National Honor Society kids, Student Council kids, Centennial High School staff, friends and family. I hope we didn't forget anyone, We appreciated you all!

Some of the signs the kids held up at the corner of Centennial & Durango

Kids working hard!

One of the cakes at the bake sale, great message!

Unfortunately, Kass paid a price being out there for a bit too long in the sun. We tried to have her at the garage sale in spurts so she wouldn't miss too much, but by the night she was exhausted and couldn't quench her thirst which made her sick from drinking so much water at once. This brought us back to her and I sitting on the bathroom floor because she felt like she was going throw up. This made her upset and then caused what we think was a focal point seizure (spasms of the left side of her face), it only lasted a couple seconds, but it was the first time we've ever seen her do that which scared us a bit. She finally calmed down and everything was ok. Doctor said we just have to watch and hope it doesn't happen again or she will have to take anti-seizure medication. Ugh!

Boulder Creek Golf Course

On Saturday, we decided that we should go to the golf tournament to meet all the golfers and be part of this event. Kass was really sad that she couldn't be at the garage sale as well, but unfortunately we all can't be cloned just yet. When we got to Boulder Creek golf course, the golfers were being given their rules, Ryan said a couple words to everyone, and Kass was introduced which caused a standing ovation from all the golfers. And they were off!

Kass and her personal golf cart for the tournament!

Jacob, Nick & Kyle volunteering!

Kass was given her own golf cart, which she shared with our friend Don Laczi, our friend who's an amazing sports photographer. He took some great pictures of the tournament. Don went around with Kass and took pictures with each of the foursomes that were playing that day. After the golfers were done, they were treated to a very good dunch (lunch/dinner). Sam Myers, Kirk Hartle, Ryan & I said a couple words to thank everyone for coming. Of course, I couldn't say my words without tearing up which brought some to tears. We raffled and auctioned some great prizes and all the prize money won from each of the foursomes was donated back to Kassidy's cause. Another amazing act of kindness!

Our Xtreme Softball Family & are amazing Tournament Directors!

It was so great to also see our Xtreme Sofball team family out there supporting. The parents & girls volunteered at some of the holes to keep track of the different competitions,register all the golfers, sell raffle tickets and sell mulligans tickets. All in all, we had 96 golfers participate, which for only 5 weeks planning the event, we think it was an awesome turnout. They golfed and volunteered on a pretty hot day! Thank you, because I know many just did it for the cause. We hope to make this an annual event and it will be called the Kassidy's Army Golf Tournament, we just hope to be able to do it in the spring when it's not so hot outside.

Kass and her new best friend at the golf tournament. Sweetest girl ever!

Cox Family & Kass one of the many foursomes who competed.

Dave Dreibelbis group

As we got home that evening, we all were in bed by 7pm, we really even didn't have the energy to do anything on Sunday. But we are now rested up and ready to tackle this week's goals. We hope to see you all at Macayos on Tuesday, Dance Party at the Purcel's on Friday, and Buffalo Wild Wings on Saturday. All info is on the left side! Make sure you take the flyer!

Thank you all for your love & support!

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.
-- Melody Beattie

July 19, 2011

2011-07-19T21:36:00.000-07:00

Two months today and it feels like a year's gone by! But oh how different we feel today compared to that dreaded day. We can't stress how much we are enjoying just being home and are watching Kass improve a bit and handle treatments better every day. NO headaches since July 6th!

We are currently trying to get organized with a schedule with Kassidy's treatments, blood draws, change of medication bags, and pills. We start changing her medication bag 3 times a day starting tomorrow because her dose has increased enough that 2 bags don't do the trick and one bag only has 1000ml. First bags are the hardest to prepare and take us a good 30 minutes, the next 2 other changes take us about 15 minutes. She usually starts her first dose around 10am the next bag change needs to happen between 3:30 and 6pm and then her last bag change around midnight. As her dose increases we will be going into 1am in the morning. It will be like getting up with an infant again. Ha! But she's sure worth it. She didn't let us sleep through the night till she was 2 and she will not let me sleep again for the next 2 years.

Sunday was my birthday and we had a great time hanging out together as a family and later on with friends. We got to be part of a flash freeze mob at Fashion Show Mall with the whole family and friends. Flash Freeze Mob is a random group of strangers that meet at a random place to strike a pose and freeze for a certain amount of time given a queue and then go on with their day like nothings happened. A fun way to liven up a public place. We were invited through a friend and we thought "why not, it will be fun!"

Kass on the left in her frozen pose.

Monday, was kinda an up and down day for Kassidy. After her first dose in the morning she was not feeling great at all, she said she felt weird. She layed down in her bed so I decided to stay in bed with her as well until she felt better. Later that afternoon she decided she wanted to go play tennis with a couple friends. Feeling a bit apprehensive, Ryan went with her and watched her play and practice. She did great even with her backpack on her back that carries her meds. A bit rusty, but all in all did great considering everything she's been through. Today she's a bit sore, but it's probably from not using those muscles in awhile.

We want her to live as normal of life as she can even while going through treatment. Letting her do things she loves to do is important to us and her. She absolutely loves sports and is a very active person. Being home all the time doing nothing, is what she calls "boring".

Kass meeting up with her friends for a little tennis.

I love that face, it's her determination face.

My camelback works well for when she's doing sports. We will make it work.

**** Reminder about this week****
Friday & Saturday - Garage Sale, Car Wash, & Bake Sale - Centennial High School
YOU CAN DROP YOUR DONATIONS THIS thursday AT CENTENNIAL FROM 5 TO 8PM

Saturday - Golf Tournament & Auction

See left sidebar for flyers.

July 15, 2011

2011-07-15T17:45:00.000-07:00

We are home at last!!!!! We can't tell you how amazing it felt to see the Las Vegas city lights arise as we reached the top of the hill coming out of Boulder City. Those of you who have never experienced this, it's a sight to see. As we were going through the Hoover Dam area you can kinda see the gleam of the city, especially the Luxor beam that reflects from the clouds in the sky and as you reach the top of the hill by the Railroad Pass Casino after Boulder City, you can see the most grandiose amount of lights in all colors that extend for miles. Just breath taking!

I didn't take this pic, but just wanted to give you an idea. Home sweet home!

Kass and I felt like we have been away from home for far too long. Last night we arrived right around midnight. We decided we would drive straight through for 17 hours just to get home once and for all. We left Houston on Wednesday around 4pm and drove to Ozona, Texas (small little town in the middle of nowhere), it took us almost 6 hours. Our plan was to stop in Tucson, Az the next night to rest and stay with friends and then continue on Friday, but we decided we just wanted to be home. We really have missed it! The quote "there's no place like home" was truly the case for us this trip.

Check out our trunk! Doesn't it look like pharmacy exploded in it?

On Wednesday, before we left, was a crazy day. We did our normal routine at the clinic first, but after that we had to meet with the checkout nurse, medical supply lady, pick up prescriptions, pay our balance and the next month's management fee, meet with the shipping clerk who will be shipping our medicine, pack our belongings, and last but not least, say goodbye to the nurses. Needless to say, Kass was wore out by the time we did all this and she was so tired we didn't have time to say our goodbyes to Dr. Weaver, Kassidy main doctor at the Clinic. :( We sure will miss them all. They were all very nice and patient with us. They are all doing amazing work at this clinic and we appreciate everything they taught us and did for us.

Nurse Laura, Kass, Nurse Janna(our main nurse), & new nurse.

I will miss seeing this sign every morning!

Those of you that know someone with cancer and want to learn about the amazing work that Dr. Burzynski and his doctors are doing, here is the link for his movie through Amazon, it costs $3 to rent for 7 days. It's called "Cancer is Serious Business" Please watch, controversial or not, this doctor is saving lives.

http://www.amazon.com/Burzynski-Movie-Cancer-Serious-Business/dp/B004LKDIX6/ref=ed_oe_vdl

As we headed home on Thursday morning we received a call from the clinic stating that the doctor from Vegas who had agreed to oversee Kass had changed his mind. He had sent a written letter to Dr. Weaver stating that he wanted his name taken off all the paperwork. The nurse then stated that I would have to shut Kassidy's pump off till we found another doctor that would work with us and she would stop receiving treatments until the matter was resolved. We were devastated!

Per FDA rules one cannot leave the clinic without having prior authorization or this form called a 1572 that states a doctor agrees to do month physical exams on the patient, THAT's IT, a monthly physical. Ugh! Immediately my body tensed up and I started to feel the stress creep up just like I had the previous weeks. We had worked so hard on getting this doctor to agree with and us and just like that, a change of heart. I immediately called the doctor that had seen Kass right before we left Vegas, he's the one that was referred to us about helping us to getting Kass on a diet that would help her withstand the treatments better. He immediately called back and agreed to sign whatever we needed. Thank you Lord! Unfortunately, we would have to wait till the next day until his staff got everything done.

We do feel things happen for a reason. Stopping the treatment for the day allowed us to drive without stopping so much for Kass to go to the bathroom and get home quicker. I guess sometimes our prayers are not answered exactly the way we want to for a reason. Lesson learned!

On our way home, we decided to finally get a picture with the wonderful Arizona cacti that remind us of the old Road Runner cartoons. Beep Beep! We missed doing this on the way to Houston, thinking we would see them again on our trip there. I made Ryan stop suddenly when I saw the perfect spot to stop at. We took the picture at a perfect time, it was just dusk and the colors in the sky were gorgeous. Arizona has some of the most amazing sunsets; last March when I was there running the Ragnar Relay, my team and I got to experience one of these amazing sunsets for the first time. Another sight to see! These days we marvel in the small things.

Beautiful AZ sunset!

Kass & I with the coolest cacti ever.

Cacti

July 12, 2011

2011-07-12T16:45:00.000-07:00

Everyday I'm amazed at people's generosity. Our family cannot get over how many have tried to help us in so many ways these last few weeks. Today Kass & I went to lunch with a young lady named Ana from here in Houston, who we met for the first time. Ana contacted us about a week ago, she had heard from a friend that we might be needing help. Without knowing us, she decided she would do a fundraiser for Kassidy. Her family is from the South Pacific and y'all know they can cook. So her family and her sold $715.00 worth of plates of food for us. Amazing! We are deeply touch by their family's kindness.

Ana (a warrior in Kassidy's Army) & Kassidy

Another great picture I received, was this week was picture of my friends daughters who decided to spend a little of their summer time doing a lemonade stand to raise money for Kass. Bless their hearts! This picture melts my heart.

Lemonade anyone?

Kass has a good couple of days. On Saturday night we got a call from the front desk telling us she had received a package. Long and behold it was a packaged addressed to her from Ron Pope. Those who do not know who he is, he's one of the singers on Kassidy's playlist that you listen to when you go to her blog. She absolutely loves his music and especially his song called "A drop in the Ocean". What a great surprise for her. She was so happy and has been talking about him non stop. Thank you Ron, for making our daughter feel special.

Some of the items Ron Pope, the singer sent Kassidy! She loved it.

Then on Monday another package. This one from my cousin Ari from Salt Lake City. It was a build a bear bunny all decked out in softball clothing wearing a t-shirt with "Kassidy's Army" on it and on the back "Join the Fight". She absolutely loved it. Thank you Ari! Her husband designed these logos that we will use in the future for some more t-shirts to sell.

Thank you Nani, Josimar & Big G.

On Sunday we were feeling a bit of cabin fever. So Kass & I made the trek down to Galveston with the Olmos family. We went to Moody Gardens Aquarium and then to dinner. We had a great time and it was so nice to do something different for a change.

Shark Cage

Posing with Migdalia Olmos

Posing with Javier Olmos

I'm happy to report that Kassidy has not had headaches at all for the last 5 days. Yes! She's been doing really well with the increase of her dose everyday. The only differences I've noticed is she's drinking a lot more water. The medicine contains a lot of sodium and the side effect is extreme thirst. She has been experiencing interrupted sleep because she has to get up so many times a night to got to the bathroom. I bet this will make for a fun way home.
The doctor had me start her on 2mg of decadron (steroid) twice a day on Sunday since she also has been experiencing a bit more nausea. They feel that if the tumor is breaking down it will cause some swelling in the brain. We want to avoid this so she doesn't have ill effects like seizures, extreme vomiting and headaches from the swelling. I had been holding off because with decadron unfortunately come other side effects as well. It's like we have to take the good with the bad, but we will watch these closely and I will hunt for maybe something more natural as a anti-inflammatory.

The great news is that we get to come home either tomorrow or Thursday morning! We are so excited!!!! Tonight Ryan flies into Houston so he can help us pack up and drive us home. Kass cannot wait to be in her own bed and get to play with her bunny Lala and her parakeet Max. Not looking forward to the long drive, but we will survive.

We have had such a great response from the GARAGE SALE that it's gotten so big with donations that it had to be moved to Centennial High School parking lot. The sale will include a CAR WASH and even BAKE SALE as well and it will be held July 22-23 from 8am to 3pm.
Those of you that still would like to donate items or volunteer any of those days, please call Vicki Hall at 702-339-8496 or Coach Spencer at 702-622-5801.

On the GOLF TOURNAMENT & AUCTION there are only a couple spots open. Please help us fill them!!! Email us at ryanandmass@aol.com and I can send you the application form or contact Sam Myers at 702-696-8535 or Kirk Hartle at 702-526-9321 for more information as well.

RIP Dylan Shaw

2011-07-12T15:45:00.000-07:00

Today I write with heavy heart as a boy who has a brain stem tumor called a diffused pontine glioma (DIPG) dies this morning. I've been following this boy's blog ever since my sister in law, Holly, told me about this boy about a month ago or so. He was so heavy on my mind yesterday that I had called my sister in law to get his mom's number so I could speak with his mom. When she gave me her phone number she told me that the mom was more apt on answering texts. So I texted her letting her know that I had been thinking about Dylan and that I would love to talk to her if she had time. Today, as Kassidy and I were heading back from the clinic I got a text from Holly saying that Dylan had passed away this morning. I hope God gives his family strength through these hard times and glad that Dylan is no longer in pain and free! Rest in peace Dylan.

www.dylandshaw.blogspot.com

July 9, 2011

2011-07-09T16:55:00.000-07:00

Yesterday, Day 8th I was on cloud 9! We received the greatest news ever. Kassidy has been having her blood drawn every day to make sure we get her levels of potassium to a safe level. Well, on today's test, her uric acid showed a 7.7. Your probably going, so what does that mean? Well, Dr Weaver informed us that most brain tumor patients here at Burzysnki, start showing uric acid increases usually when the tumor starts to breakdown. I wanted to scream to the world, THANK YOU GOD! I couldn't contain my excitement and at the same time saying a silent prayer and hoping that this is exactly what it means. We do have to watch her level of uric acid does not go over 10, because then she can develop gout, but even if it does, she will be given something to control it.

Uric Acid at 7.7! Yipee!

Now, we have been working hard on getting her levels of potassium higher. She is now taking 2 mama jamma potassium pills 4 times a day. She's never been one to have trouble with pills, but the first morning she was taken one we were having breakfast and I hear her gag. Out came the pill! The pill is big, so I started to cut it in half, she says it still kinda hard, but she gets it done. Today at our appointment at the clinic, one of the other patients suggested we put the pill in juice and let it dissolve and then she can drink it. Duh! Why didn't we think of that.

The mama jamma potassium pill!

Today I found an error on the pump, she wasn't getting enough of bag 2. During weekends, the clinic works on a skeleton crew and just sees patients like us learning. They do everything for you, but I was looking at her dose sheet and looking at the delay of the pump and it just didn't make sense for what I had learn the previous week. I had to call the clinic and they told me to just reprogram the pump and shut it off after her last dose tomorrow at 6am. I'm feeling pretty confident with a lot of the procedures now. Next week all I have to learn is how to change a bag of medication during mid cycle since her doses are going up, bag 1 only holds 1000 ml and her doses will be more by the time it administers 6 times. Other than that, I've learned everything they teach and all we need is the doctor from Vegas to sign the paper saying he will oversee Kass while we are at home. After this is done, we can go home!!!!!!! Yes!!!! Kass & I are ecstatic about that.

Kass has been handling the medicine pretty well these last 3 days she has had no headaches. Has had some small nauseas, but all in all feeling pretty good. We have noticed that after her first infusion of the day with her upped dose, she feels pretty tired and has to take a nap. In the evening, she has more energy and in the morning she has a bit of hard time waking cause her dose is usually finishing when I'm trying to wake her around 7:30am. Her body seems to be getting use to the medicine a little more each day.

It's been great hearing from y'all (Texas style). I have attached a couple pictures of peeps showing Kassidy Army pride.

Savanna with UCLA softball head coach Perez

Lopez boys posing, what they are great at.

Sarah and Coach Spencer from Centennial High School sofball.

July 7, 2011

2011-07-07T15:34:00.000-07:00

Javier & Ramses and their support group for their goal of 42 marathons in 42 days.

Holding Kassidy's banner before their 40th race which they dedicated to her.

Panama people, if you would like to buy these t-shirts to support Kassidy please call
Gente de Panama, si quieren comprar estas camisetas para apoyar a Kassidy por favor llamar a
To make the picture bigger, just double click the image
Alcibiades Urriola at (507) 6747 3726

This morning at the Clinic Kass was really tired she crashed while waiting for the dietician to see us.

Last night she said she felt good so she worked out at an easy pace for a 45 minutes.

Day 7! The end of the first week of hope. I'm happy to report that we are getting the hang of everything quite fast. Repetition of the procedures have definitely helped. Kass & I have recorded the nurses with our camcorder doing each of the steps so we can have a visual reference on how to do everything ourselves. I still get a little nervous drawing her blood and cleaning the area of where the catheter comes out of her chest, but I'm getting better every day.

Our days at the clinic start around 9am, we are there usually almost to 11am and noon sometimes learning every step this is every single day. Sometimes we do have to go back for seminars at 5pm, but not very often. The day starts off with checking vitals, drawing blood (lab work), nurse assessment, doctor appointment, Tubing change, catheter tip change, preparing the medication bags, programming the pump, dressing change on where the catheter comes out of her chest and sometimes change the batteries on the pump. What a mouthful isn't it! Needless to say by the time noon comes around, her and I just want to go back to the hotel, eat lunch and take a nap. Kass is usually pretty tired after this and sleeps a couple hours; probably because her dose is increased every day at that time.

Her dose comes in two bags as you saw in a previous picture. Bag 1 contains the A10 antineoplaston which breaks up the tumor and Bag 2 contains the AS2-1 antineoplaston that destroys the tumor. These two bags are then attached to a small pump that administers the doses around the clock. Her doses are increased every single day unless the doctor sees a problem. But she is attached to this device all day and night long. She must carry it in a backpack, it's her new best friend. By the way, she named her pump and it's name is Gertrude, Getie for short! :)

We did receive great news today, we were told that if we can get Kassidy's potasssium deficiency under control and we can get an ok from a doctor that is going to oversee Kass in Las Vegas, we can go home. Yipeeeeeeeeeee! So today we met with the dietician to tweak a couple things in her diet and the doctor prescribed some potassium supplements and we hope that does the trick. Kass really wants to be home for the garage sale and for the golf tournament that is being done in her honor. She wants to personally thank those who are participating in these events and have been part of Kassidy's Army thus far.

We also have been touched by two young men, Javier Gonzalez and Ramses Cano, two ultra marathoners that have dedicated their last two marathons to Kassidy. What they will be accomplishing today is no easy task, their last marathon run of #42 in 42 days. Yesterday their goal was to go sub 4 hours in their marathon and they ended up completing #41 at a time of 3:46, an amazing time, especially since they have been running 40 others continuously the days before. Those of us who are runners know what an accomplishment this is. They told Kassidy that they hoped that the pain they endured while running these, would take a little less of what Kass will have to endure in days to come. Their motivation was Kassidy. Very touching and brought tears to our eyes! They made a little video for her to give her to lift her spirits, here it is for those of you that know spanish, you can click on this link to watch it:

http://youtu.be/kG9_3z5jWFk

July 5, 2011

2011-07-05T06:54:00.000-07:00

We would like to wish good luck to Javier Gonzalez and Ramses Cano for dedicating today's 40th marathon run to Kassidy. These two men goal is to run 42 marathons in 42 days for benefit of the Pura Voluntad Foundation. A non-profit organization dedicated to promote a healthy lifestyle, hard work, dedication as means to achieving any goal. Here is their facebook page for those who are curious about their feat: http://www.facebook.com/profile.php?id=520120265#!/pages/42-x-42/153336928069112
We have always been amazed by the power of the mind and body. It's true power lies beneath all of us, we just somehow have to dig deep and find it. Today we will be thinking of these two men all day as they go out on their quest in achieving this great goal for such a great cause. We cheer them on from afar and thank them from deep within our hearts for what they are doing for Kassidy. THANK YOU!
At 5 p.m. today they will be saying a few words and dedicating this run. Those who live in Panama City, Panama and would like to run, walk or just cheer on Javier & Ramses please call or email my friend:
Alcibiades Urriola M.B.A.
alurriola@hotmail.com
(507) 6747-3726

July 4, 2011

2011-07-04T21:38:00.000-07:00

˜˜”*°•.¸☆ ★ ☆¸.•°*”˜˜”*°•.¸☆

╔╗╔╦══╦═╦═╦╗╔╗ ★ ★ ★

║╚╝║══║═║═║╚╝║ ☆¸.•°*”˜˜”*°•.¸☆

║╔╗║╔╗║╔╣╔╩╗╔╝ ★ 4th of July!!!!!! ☆ 2011

╚╝╚╩╝╚╩╝╚╝═╚╝ ♥￥☆★☆★☆￥♥ ★☆

from

Kassidy & I

Bag 1 & Bag 2 connected to the pump that administer the 6 doses every 4 hours.

On Sunday, we took Ryan and Kyle to the airport so they could go back to Vegas. We sure miss them already! But Ryan had to get back to work and Kyle has to continue his cross country training. He has to report to Boise State in just a little bit over a month. Ugh! I don't even want to think about that right now, it's just another jab at my heart every time I think about it.
Well, that same day Kass & I had a really long wait at the clinic since all the patients came all the same time for their treatment that day. Each new patient has to come every single day like us to learn the steps for at least two to three weeks. The staff is very friendly and patient and they feel like repetition of the procedures are really the best way to learn. I also don't mind waiting since I like watching the nurses work on different patients and try to learn that way as well.
There are patients of all ages from all over the United States that are in the same room as us every morning. Each of them with a story of their own, two of them battling breast cancer which one of them has been battling for 6 years and this is her last chance, others brain tumors, and lymphomas. When I watch them I can't help but feel admiration for their courage and perseverance. On the walls of the rooms are lined with collages of kids and adults that have been at Burzysnki and beat their cancer. What joy it brings me to see their pictures that tell their stories of their successful battles. More than anything,I long for the day to see Kassidy's story someday displayed in these walls as well.
Today went a lot smoother and I got to unhook Kass from her catheter this morning for the first time. Boy was I nervous! But got it done and she was able to take a shower by taping the port area with some plastic wrap around it. At the clinic we were in and out in less than an hour and half and came back right away cause Kass was exhausted after. She slept for about 5 hours. When she woke she was bored so we decided that we would go see a movie at the CityCentre Moxie Studio Grill, a movie theater/restaurant/bar. What a concept! Her and I thought it was pretty cool, but we did not eat there since these days Kass is on a pretty strict diet.
Kass diet does not allow her to go over 2000 mg of sodium a day. The ANP (antineoplaston) has a lot of sodium in it so she has to watch her intake of sodium so she doesn't damage her liver. That said, almost all restaurant foods have an exorbitant amount of sodium in their foods. I had to download an app on my phone that shows the nutritional values of each restaurant, it was eye opening how much salt we eat. Also, we are fortunate to have all kinds of health food stores around the area and we bought almost all organic for her and foods high in potassium. I want to make sure her body stays strong through the treatments so we also walk every night.
Tonight after the movie got out it was great cause we had perfect timing. As we got to the bottom of the exit escalators the fireworks show began. We stood there and watch the whole show which was awesome, they had a band and show at the same time. We then walked back to the hotel. Good night all, tomorrow is a new day!