Chicks Dig Scars

MAX BEFORE SURGERY...

 

MAX AFTER SURGERY...

Another busy day, we worked with nurses through the night to help Max try and stay comfortable and manage pain.  A blessing is that we haven’t had any issues with any of his vital signs, often when an adrenal gland is removed you can have issues with many organs and automatic functions like blood pressure begin to react. We have been very lucky to have no complications this far.

Other key events today:

-Madison and Molly came to visit Max for the first time today. They met with child life specialists first to play and learn about all the helper straws, band-aids, and other devices that make Max look funny.  Madison did a great job and was prepared and reassured Max that he was going to be ok, little Molly didn’t like to see her best buddy in pain.

-Initial pathology came back on the tumor and confirmed that it was a neuroblastoma, we will learn the final report which will show a lot of the genetic makeup by Monday.

- Max really enjoyed 3 lollipops today.  Bubbles and wagon rides to follow tomorrow. All of these activities help encourage his digestive system to start working.

-Kari and Josh finally came to a decision to move forward on 3 different clinical trials.  This initial consent will allow us to get more tests to help determine staging. We will be trying to look for an oncologist in another state who has treated a patient like Max for a second opinion.  We both agree that we want to stay put here in Seattle so that we can utilize our amazing support system and the countries best neuroblastoma specialist, but hopefully we can find another dr that can reassure us that we are doing the right thing with his treatment or give us a little more information on a plan for treatment.

-We were able to connect with a lot of specialists to setup appointments to help determine his ongoing care.  (Opthamologists, neurologists, neurophyscologists, OT/PT, social workers, child life specialists and case managers so far)

-We had many encouraging visits with friends and family!

-What next? Bone Scan, Spinal Tap, MIBG scan, then Chemo and medication to begin Monday.

 Question of the Day: How do you keep an active 18 month old with 8 tubes and monitors completely still so that they don’t pull out and disrupt everything?