March 19, 2012

Today started a little exciting.  As I went to flush & draw Kassidy's blood for her routine Monday labs the line was not budging.  I could not flush or get a blood return.  Oh my gosh, here we go again! I tried heparin and the line still would not budge.  I even called the infusion room at the Houston Clinic and nothing worked.  So I called Dr. Bernstein, Kassidy's local oncologist he instructed me to bring Kass in to the office; which I gladly did, but that meant I could not start Kassidy's 7:30 treatment.  She never feels well off.

At the doctor's office, he jiggled the line for a bit and just flushed.  Kass jumped in surprise, but not in pain.  Sigh!!!  He ended up drawing my CBC & CMP tubes for the blood tests I needed to perform and flushed the line with heparin.  Nothing I could have not done at home, but so glad he was there to do it just in case something went wrong.  We were soooooo thankful that the line started working again and that Dr. B was there to help.  Thank you God!

Since the line has been acting a little funny, on Wednesday we will have a line study to make sure the line is still viable.  We just pray that it is because we really don't want another catheter port to be surgically removed and a new one installed.  The last broviach from January is finally just healing around her chest.

On the way out of the office Kass had to throw up a couple of times and even when we got home.  It's amazing how much better she feels on treatment.  I even hooked her back up while she was on the bathroom floor just to make her feel better.  It took about 45 minutes and she was a different person, so she went to school and then to softball practice to coach the catchers.

A crazy morning ended up being a great day!  God is good.

All of you know that we are always looking for new fundraisers to keep raising money to cover Kassidy's medical costs.  It's so stressful knowing that we still have not raised enough funds to cover Kassidy's treatment for 2 years.  That's why I'm asking for your help!!! We have some big fundraisers ideas in the works.

We would like to again do a Kassidy's Army golf tournament and would love some ideas, raffle donations, & volunteer help.  Those of you that would like to help, just have ideas, or have golf contacts, please email us at ryanandmass@aol.com.

Also, on March 31st Lifetime Fitness is putting on Leadman Triathlon in Boulder City.  They have agreed to give donations for every volunteer that wants to donate their time.  Ryan and I have signed up to help out with Transition #1 or Transition Crew, this is the transition area from the swim to the  bike.  We are excited that Lifetime has given us this opportunity.  Those of you that would like to join us that Saturday morning, please register at the following link and DON'T FORGET to comment you are part of Kassidy's Army.

www.leadmantri.com

Please also check out all the other fundraiser we have ongoing on the left hand side of the blog.

Thank you all for supporting Kassidy!!!!!!  We will be forever grateful!!!!

March 11, 2012

It was a great week for Kass until Friday.  That morning she woke up with a headache and looked so tired.  I kept her home from school that day since it looked like she needed the rest.  We weren't sure if it was an allergy headache or just more brain swelling, so I gave her IV decadron and an allergy pill which was kinda of a bummer because we were on our way to weaning her from the decadron. She hates, hates her cheeks right now. Yes I know is temporary, but so hard to explain that to a teenager.

Also, in between ANP treatments I gave her a bag of fluids till it was gone since it looked like she was a bit dehydrated, her lips were pretty chapped.  She slept most of the day and the headache pain subsided quite a bit by the late afternoon, but not totally.

That evening we were going to celebrate my nieces 15th birthday at one of the casino ballrooms close to home.  Fortunately, we had thought ahead and had gotten a room at the casino which it was being held at, just in case Kass did not feel well.  So glad we did!

The girls at our table.

Kass is not one to enjoy getting dressed up, but she did.  She let me do her hair and we went to enjoy ourselves.  Kass made it a couple hours and then asked to go back to the room.  We were so glad she at least got to enjoy part of the celebration.

The next morning we woke early to go participate in Jaxson's 5k run/1mile walk.  We decided to walk with Kass instead of run, but we only made it 100 yards and we looked at her face and saw pain.  :(  She had instantly gotten her headache back 10x worse.  Ugh! We walked her back under the shade and I administered some IV decadron through her catheter right there, but she broke down.  She had big tears streaming down her face.  My heart instantly broke and I wished that I could take it all away. My poor baby girl! I think it was a combination of headache and frustration that she can't get her body to do what she wants.

Jaxon's 5k run/1 mile walk

We decided to leave, but by the time we got to the car Kass said she felt a bit better and wanted us to take her to Bullhead, Arizona to watch her hs softball team at least play the last game of their tournament.  Bullhead is only a little over an hour away, so we agreed.

At the game she got to sit in the dugout and be part of the team.  It was great to watch. She even got to ride the bus back with the girls.  I can't tell you how much she misses softball!  Softball is part of her, but cancer has taken that away from her.   I hate you cancer!

Such a symbolic picture, the girls still wear the #11 arm band honoring Kass's fight.  Thank you!

That smile!

I love those girls!

This week I ask God to please take these headaches away and give me patience.  I also ask to please watch over all those other kids we know that are fighting as well.  I ask you to keep them in your prayers as well.

Gage is doing well after surgery, but has been battling gait problems.  His parents are anxiously waiting the pathology report results to find what they should do next so the tumor does not come back for a fourth time.

Easton is doing ok this week, but his parents are prolonging his trach surgery till after their vacation so Easton can experience swimming one last time before he has to get a trach.

Jaxson was flown to Boston's Tuft Hospital for pediatric gene targeted therapy (to one of the only dr's in the country doint this, Dr. Burzysnki does it but only adults) because his body could not handle ANP.  He's doing better and under the watch of a hospital staff.

March 4, 2012

Well I guess it's been awhile since I've updated, just been so tired by the evenings.

We finally received the new pump, we gave in after all the troubles the refurbished has given us.  Still learning it a bit and hope to have it running soon.  One of the clinic's patients family member made up a video on how to charge, load, & program the new pump.  Thank goodness!  Between the video and Missy, Gage's mom from Houston, I've been learning little by little.

Old Pump meet New Pump

Kass has had it kinda rough these last few weeks, symptoms seemed to subside and then flare again.  It was so frustrating.  Her throat was so sore from throwing up so much, we felt so helpless.  When we thought we had the symptoms under control they would start again.  The clinic suggested we start maybe trying IV decadron, this is a steroid that is directly administered through her broviach catheter/port. We were so scared to give it since if given to fast through her port it can cause immediate vomiting, but we were so cautious and after giving it to her we noticed almost immediate relief of symptoms.  They also suggested we get an immediate MRI.

Ryan and I were so worried that it could be tumor growth.  So to Steinberg Diagnostics we went! We received the results of the MRI on the following Monday showing that we had a stable tumor.  Unlike last time, we were elated and so thankful!!!!!  MRI did show a bit of swelling so we upped the dose of decadron a bit to help her with the swelling.  Hoping to soon start weening her again, but after she has felt better at least for awhile.

It's been great this last couple of days since she's been able to actually be back to her activities, school, & friends.  This weekend was one of the best ones she's had in a long time.  She was even able to go to Centennial HS first softball scrimmage game on Friday.  It was so great to see her back in softball uniform, but at the same time it pained me to not actually watch her play.  But again, she's just so happy to be part of it.  My sweet girl!

Lala the bunny cuddling with Kass

So we fight on!