August 31, 2011

     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

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

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

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

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

Us

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

"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

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!!!

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

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

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.