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.