Jimmy V and a Duke education

Just wanted to update you all, and let you know that Braeden had his first Avastin infusion yesterday.  He will be getting these infusions every two weeks at the Jimmy Valvano Day hospital located on the 4th floor of the Duke's Children's hospital. 
Seeing Jimmy's name on the wall at Duke brought a smile to this NC State fan's face :)  Not to mention the win NC State had against Duke last night.  (Whoo hoo 88-66)   See miracles DO happen!!!

After yesterday, we all now understand that infusion days will be an all day adventure. We were on campus for almost 6.5 hrs yesterday.

Braeden will need to have labs done to ensure that his values are good.   One of the major concerns when taking this medicine is the possibility of kidney damage.  The medicine can cause a condition called proteinuria which causes severe protein loss from the kidneys which can lead to kidney failure and other not fun to read about bad things.   They also have to ensure that his blood pressure stays stable during the therapy.  The medicine can cause it to go up to dangerous levels.   During the 1.5 hour infusion yesterday, they checked his BP every 10 to 15 minutes.

Once the labs are drawn, we will wait for the results.  (Braeden required the ultrasound team on both Tuesday and Wednesday to come and place his IV. We are hoping in the future that gaining access will not be so difficult for the IV team.) Once the results are back and we are told that they "have passed"  the attending MD will call the pharmacy and have them compound and make Braeden's infusion.  The goal is for them to have the medicine ready within 2 hours.  We are given a pager and are allowed to walk around, find food etc.

Tuesday evening, I spoke with Braeden's caseworker from school, and she suggested that we "hospital home school" him.  Basically, this means a WCPSS teacher will come to our home and tutor and catch Braeden up on his school assignments.  We also decided to drop his AP Geography class.  He definitely doesn't need the added stress of an AP course. 

At Duke yesterday, we met with a teacher that Duke has arranged to meet and "teach" Braeden while he is at Duke for the next six weeks while he is there daily for radiation.   The Duke teacher got all of Braeden's class information, and should be in close contact with his teachers to get his assignments.  The hope is that Braeden will not fall behind.  The bigger hope is that Braeden will not be stressed about school and be more focused on his health and getting better.

Braeden in general is doing fair.  He is not sleeping well at night because of his high dose steroids. He is experiencing neck and shoulder pain that is bothersome.  His hands are obviously still a big concern. 

Today he was able to go to school for the first time in almost a week. School dismissed 3 hours early because of the forecasted snow.  School must have tuckered him out, he just woke up from a 2 hour nap.   Today was his official last day, until after his 6 weeks of radiation is finished.
I have attached a picture of him during his infusion yesterday.

Monday our radiation adventure begins.

#BraedenBrave
#MrUnlucky