February 19, 2012

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

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!!!

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

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..........