January 17, 2013

Mid December, we finally had to order a wheel chair for Kassidy.  That was one of the hardest days for me.  I called the nurse at the oncologist office and couldn't even speak, so I had to call back and was glad to get her voicemail, I left her a message with the best composed voice I could muster at that moment.  After the call, all I could do was sob in my car as I drove to one of her bowling matches and then came the anger.

I was angry because we can see that her body is deteriorating and that she cannot do the things she wants to do.  Her legs are getting to where they hurt and swell after a long week at school and she's getting where she cannot walk long distances. 

That same day when I got to her bowling match she pleasantly surprised me by bowling one of her best games.  She bowled her first 200 game!!!!!!  I immediately forgot why I was mad and couldn't be happier for her.  She was so excited! And I was thankful to God that I could be there to witness it.

Our moment of triumph ended quite quickly after we got home and had dinner and she proceeded to throw up everything she had eaten.  Dammit!  The tumor reared it's ugly head.  But even an episode of vomiting couldn't stop her happiness, she was still so proud of herself for her bowling such a great game and so were we.  It put it all in perspective the rest of the evening........

That next week she was so excited cause Kyle was coming home from college and the day after that my family from Panama was coming for Christmas and New Years.  She loves having her brother home, she truly misses him.  And we haven't seen my family over a year so we were all excited to have everyone together for the holidays.

That Saturday after Kyle came home, a friend of ours had gotten us tickets to the Maaco Bowl football game where Boise State vs Washington were playing here in Las Vegas.  Kass was excited to spend time with her brother, but that morning she woke up with the most horrible migraine she's ever had.  She was in tears!  For Kass to cry in pain is very rare; we knew at that time it had to be bad.  We spent the morning icing and massaging her head, administered a dose of IV steroid, gave her some advil, and even used our new pain MVT (micro vibration therapy) device.  The combination of all these made so the headache was bearable.  We asked her if she just wanted to stay home, but she said that the tumor would not ruin her plans.  So she grabbed her warm Boise gear and headed out the door with Ryan, Kyle, and Kaela.  She had a great time!  So glad!!!  Sigh!

Go Broncos!

We had such a great time for Christmas .  Our home was full of family from Panama and Utah, we could not asked for a better way to spend the holidays.  After Christmas, our whole family took an amazing trip to Sea World, exploring San Diego, Disneyland, Santa Monica, and LA.  The previous six years our family had always opted to go on a family trip instead of buying gifts for Christmas.  It was actually an idea that Kyle and Kassidy had come up with years ago.  Ryan and I loved the idea of eliminating the craziness of buying the right present for each other and instead making memories, they usually last longer.  Over the years, it has made Christmas a bit less stressful and truly more enjoyable and we have had the chance to go to some great places, but of course now it's a little harder with all of Kassidy's medical bills.  We are so thankful to my aunt and uncle for gifting us such a great trip this year.  We are truly grateful to them!!!

Family at Bellagio Christmas Gardens

Sea World!

Kass and Kyle trying their luck at ring toss

Disneyland

New Years Eve at Downtown Disney's Jazz Kitchen

Chinese Mann Theater

Santa Monica

Cars Land

After we were back to real life and the family was all gone, it ended being a very hard week for all of us.  Through this cancer journey you get to meet other parents and children going thru childhood cancer. We keep in contact, console each other, ask each others opinions, keep up with each other stories and struggles.  Well, that week we lost three children who had been courageously fighting; Amelia  who was fighting a DIPG brain stem tumor, Chris who was fighting an ependymoma brain tumor, and Micah, fighting a brain stem ganglioglioma (same tumor as Kass).  We were devastated to hear the news of all three passing all in the same week.  I could not imagine the pain these parents feel, the emptiness that's left in their lives.  My heart, my prayers, my deepest sympathy goes out to each of them.  I hope God can heal their hearts from such a big loss.

Also, that same week Kass was having more troubles with saliva issues where she has been choking more while sleeping, more pain in her extremities, more nausea and her right eye has been doing funny things; all this freaks us out and makes me think that the tumor is growing.  Of course right before our MRI next Monday the 21st to give us more anxiety.   Ahhhhhh!  

Meanwhile, also Michael who is fighting medulla blastoma and  Easton, Bishop, and even Amber who too have the same diagnosis were struggling as well with oxygen problems, seizures, migraines.   It's so hard living in fear for your children's life!!!  Sometimes feeling helpless for your own child and those of others going thru the same struggles.  I say it's not fair!!!  Times like these is when I ask God to please help me believe that our children's struggles are not in vain and to give us strength to keep putting a foot in front of the other everyday no matter what the day brings.

This week and next week we have all kinds of doctors appointment for Kass.  We would like her eyes checked, her monthly checkup done, MRI completed, chiropractor and be seen by her local oncologist.  We believe it's imperative to do a sleep study to make sure Kassidy's level of oxygen are not dropping too low at night because of her swallowing and saliva problems.  Hopefully we can talk the insurance into believing the same.  Also, Kass will be seeing the eye specialist to take a look at the back of the eye to check the problem we are seeing with the eye and of course the dreaded MRI to check on the tumor itself.

We are hoping and praying for some good news this next week.  Kass reminded me that if she has stable tumor she would like to start her weaning from the medication.  I hope we can do that soon too.  We are crossing our fingers!

Will keep you posted on MRI results!  Prayers please!

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.