January 24, 2012

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

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

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

"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

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.