December 31, 2011

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

March 2011

April 2011

May 2011

June 2011

July 2011

August 2011

September 2011

October 2011

November 2011

December 2011

December 25, 2011

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

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

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

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

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

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

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

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

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!!!