Wednesday, March 28, 2012

Primary Children's Oncology visit

 Headed to SLC yesterday with the girls for Haven's appointment.  It's about a 600 mile round trip drive!!!

 During the drive Haven decided to take a nap and Rohnin decided to take a few bites in to Haven's orange.

 The view from the parking lot was breathtaking - so beautiful!

 Haven getting her weight and vitals done.

 Blood pressure was great.

 Working with her new nurse Tiffany.  She was showing Haven a new way to numb the port.  They have a cold spray that works instantly.....ultimately Haven decided to go with the cream and not try something new since it was her first time there.

 Prepping to access the port.  Haven was not happy that the needle was different looking but it was the same - 1" needle.

 Hoping the port still works....we flushed

 and flushed!  They have a medicine to unclog the port if needed....but after a few flushes...

 We were in business....what does that mean!?  NO SURGERY!  Yay.....Haven did amazing as usual.  We had lots of blood taken.  Some of the labs we checked were her IGG levels, prolactin, sodium, IGF-1, and CBC.  They of course checked other oncology labs but that's what I can remember. 

Her doctor was great...we really liked her.  She listened to both Haven and I. She had also read up on ROHHAD and knew about Haven.  She had the latest info from Hopkins on Haven that we had sent up to her. 

We did not receive chemo yesterday as we needed to get all of her labs done first.  I am to receive a phone call today with the results and she will have her chemo on Friday this week at Dixie Regional Hospital.  We got a prescription for numbing cream and for more DDAVP. 

 Haven wanted to do a few photos from the campus.  This is front of the Painted Horse.

 Haven the Gnome

 Being the bird

She is just too cute!!!!  She did amazing.....we are very proud of her.  Will update again after chemo on Friday!


  1. love my girl. you are such an amazing little girl and so strong and brave. we miss you and love you and hope we will be living closer to you guys next year then we will have lots of play dates and fun. keep up the great work my beautiful girl. we love you mommy daddy and Rhonin so much.

  2. Dear Misty

    What wonderful news that Haven won't have to have surgery. I pray that all her lab work will bring more good news.

    Please tell Haven that I loved all the pictures and that I'm sending her (((((BIG Hugs)))))!

    Continuing to keep Haven and family in prayer.

    With prayers & best wishes,