Monday, December 13, 2010

I hope I'm not jinxing us......

I thought Audrey's cute little voice in this video was a good way to announce that they said Matt could go home for Christmas!  Yay!  Initially, they said we would need to stay a month, and I think that if we were at this point and it was January, we would be staying for that long.  But it's not, and we should be able to go home next Tuesday, and return on January 2nd and again on January 31st.  Happy Happy Day!  Matt had his first dose of this new chemotherapy today.  They will monitor him closely this week and he will have an MRI a week from today to see how this drug is affecting new blood vessel formation/blood flow in his brain and around his tumor.  Then......

We'll be home for Christmas!

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
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!

Saturday, December 04, 2010

Yay! Yay! Yay! A plan, A plan, A plan!!!!!

Sorry I have been slow to update our blog.  We have been through a whirlwind of information overload, planning, and WAITING. 

The news after Matt's spinal MRI was not good.  The tumor in the spine is back.  It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins.  There is also tumor at the base of the spine.  These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine.  None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.

Part of the wait was due to a radical shift in our 'plan'.  We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized.  We discussed several options and ultimately felt the best about St. Jude children's research hospital.  It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors.  Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me.  We all feel very very good about our decision to have him treated there.  However, we had to begin the waiting game.  First, all of his records had to be sent to St. Jude.  Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh!  How can there be a holiday in the middle of our CRISIS?!?  LOL!  Then it was the weekend.  Then St. Jude had to send for a bit more information from pathology.  The wait has been agonizing, but today we finally got the go-ahead and the plan.  Matthew and Audrey and I leave for Memphis bright and early Monday morning.  We will be staying for a month.  (Don't talk to me about the whole Christmas thing.  I'm in denial about it.  We'll take it day by day.)  At St. Jude, the patients live 'on campus' but are not 'in-patient'.  Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217).  The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.

So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing.  A lot.)  Thankfully, we have a tremendously wonderful and supportive ward and neighborhood.  Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt.  I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons.  Carolyn and my mom will also take him some of the time.  The big boys are easy, since they are in school all day and Warren works from home.  Being able to bring Audrey is a huge relief.  I was really obsessing about what to do with her.  She is sort of a mama's girl and is only 18 months old.  When I learned that I could bring her, I felt that everything would be fine.  I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.

Matt is still doing well.  Neurologically, everyone who checks him out, is amazed.  He has very few symptoms at all from his cancer.  He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self.  He is just upset about having to miss so much school.  :)  That's my Matt!!!  His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea.  Then, Matt could be involved and 'give back' in some way, as well.  His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need.  They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients.  Then, Matt will be distributing them.  I think it's wonderful!

I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.

Thanks for your support and love, everyone!

P.S. We had some photos taken a few weeks ago with Cecily.  She is AMAZING!  In approximately 5 minutes, in the pouring rain, she got these photos of our family.