Sunday, December 12, 2010

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!

7 comments:

EmilyCC said...

Oh, I'm so happy to read this post! I hope the rest of your stay has more good news!

Kristin said...

WOW! Busy! We are so hoping that things go great! We miss you and are sending more prayers and love your way! Hugs to all!

Dad said...

You guys just hang in there ok? it will all be worth it. Hold strong and keep the Faith.
Dad

johnjillhuz said...

I can just imagine how it is to meet someone and then sharing one with another your experiences with cancer. Allison, you are amazing and I am so grateful we have been able to keep in touch through the web. I believe it is such a blessing that St. Jude's took Matthew and that they are giving your family a wonderful experience as you go through the roller coaster of emotions that come with cancer. Bless our little children, these tough cancer kids! We are praying for you, Matt, and the rest of your family.

Ben said...

How happy I am to hear that you are having an amazing time. I'm glad you can interact with the other parents, and find strength in them. I couldn't have lived without the parents I met at Ronald McDonald House during our 2 month stay. They were wonderful and supportive even though our struggles were different. Hang in there and keep up the good work. We keep the prayers going for you and we keep your names in the temple here in Mesa. Love to you and Matt.
Jenny and Family

belmomma said...

Sounds like you are just where both Matt and YOU need to be. Being able to talk with other people who are going through the same situation as you are is I'm sure very therapeutic. Also, your little lady is such a doll!!!

Jessie said...

I don't know how I somehow missed that you were in Memphis all this time. Alli, you are just amazing. I can't imagine moving away for a month with 2 of my kids.
It sounds wonderful in just the right ways. I'm so glad you're able to connect with other parents and have those great talks that are so therapeutic.
I'm happy to hear you'll most likely be home for Christmas!

I sure love you and your family.