St. Jude's Week 1

We've been here in Memphis for a week!  Wow!  It's been a super-busy week with tons of tests.  Here's a run down of all the tests and appointments Matt has had this week:

New Patient Assessment

Neuro-Oncology New Patient Visit

Assessment Triage/Labs/Port access

Visit to School Program

Knee X-Ray

Port X-Ray to check placement

Neuro-Oncology On Therapy Visit

MRI Brain (unsedated attempt 1)

Nutrition Consult visit/Eating safely

Echocardiagram

EKG

Visit to Family Resource Center

Social Work Consult/Visit

Child Life Visit

Patient Services Orientation

Line Nurse Visit/training

Anesthesia Consult

XR Central Line Patency check X-Ray

Line Nurse Visit

MRI of Brain (sedated this time, attempt 2)

MRI of Spine (also sedated - done along with Brain MRI)

NM (Nuclear Medicine) PET Brain Scan Injection (Sounds scarier than it is, this is just where they inject the dye through Matt's line)

CT PET Brain Scan

Visit with Chaplain

Visit with Research Nurse to sign on to minor protocals (3 of these at various times)

Pharmacy Introduction Visit

Neuro-Oncology On Therapy Visit

Sign onto PBTC20 Protocal studing the drug AZD2171 (A VEGF receptor that will hopefully stop the blood flow to the tumor).

Phew!  And THAT, my friends, is what the first week at St. Jude Children's Research Hospital looks like.  :)  Add to that several large Christmas carnivals/parties that are thrown by large corporate sponsors, and you can get a sense of how busy and tiring our week has been.  I will try to update about more specifics.  I have been journaling everything, but it just hasn't made it's way to the blog, yet. 

I will say that St. Judes is the most amazing organization I have ever had the privilege of being a part of.  They take ideal pediatric cancer care and wrap it up in an extremely kid friendly, comforting package.  One mom I was talking to was there for her son's yearly check up.  He had Retinoblastoma and is doing quite well now.  Anyhow, as she was checking him out of school the secretary said, "good luck on your visit to the hospital."  The boy looked curiously at her and said, "I'm not going to the hospital, I'm going to St. Jude's!"  They take a very difficult situation and make it as organized and compassionate as possible.  They take care of all incidentals, so that when you are here, you truly just have to focus on your child.  They arrange all travel.  They have patient housing.  Families are welcome - even encouraged.  They pay for food.  It's the first place I've ever been where every single thing is thought through and is made as simple and convenient as possible.  It is awe inspiring!  The children here are the very sickest children there are, that much is certain.  I want to kiss all their shiny heads!  But, it's also a place of hope and of laughter.  The children are interacting with one another.  The parents are supporting and helping one another.  I've been amazed to hear other parent's stories.  Every single story is as impossible and unbelievable as my own.  Every single day, casual 'how are you' conversations turn intimate, as we share our deepest hopes, dreams, and fears with perfect strangers.  It is uplifting to be here.  I am so glad we made this decision.  I pray the treatment is effective for my Matthew!