Our Trip to Texas Children's

Overall, it was a pretty good day.  We left out early this morning, dropped Mackenzie off at Oma & Opa's and hit the road for the three hour drive to Houston.

My Dad lives in Houston, so we stopped at his house first where he had lunch waiting for us.  We then headed for the med center and Texas Children's.

The facility itself is beautiful, but what we were so impressed with was how incredibly nice the people were.  From the Nurses to the Doctors, the Case Manager, even the Social Worker, everyone was so incredibly kind!!!

Dr. Blaney was amazing!!!  Dr. Shah had told us she really thought we would like her and she was right.  Dr. Blaney took the time to explain our options and answer whatever questions we might have.  She even paused a few times, just to let mommy cry.

Here's what we learned:  There are no protocols currently available for Connor to be placed in at this time.  However, they do expect some to open in the next 3 to 4 weeks.  So, in the meantime we have three options.  Number one, we can do nothing and wait until a protocol opens for Connor.  Number two, we can try a combination of two i.v. chemo drugs they give pediatric patients who are too young for radiation and either see what happens or wait for a protocol.  And last but not least, we can start him on an oral chemo Temodar and see what happens. 

James and I talked about it and after hearing from Dr. Blaney, Dr. Shah and other healthcare professionals how minimal the side effects are and how wonderful other children on Temodar are doing, we have decided to start him on the Temodar on Monday.

This chemotherapy drug is normally a pill, but the Oakdell Pharmacy has graciously agreed to make it into a liquid compound that Connor can take.

We don't know how long he'll be on it, but the doctors will be monitoring him every week, checking blood counts and everything while he's on it.

The thought is that he will do as well as the other children which means he can still be active like a normal 4 year old and he can still go to school!!!

Temodar is proven to have some affect on brain tumors and we're hoping that if nothing else it will help stabilize Connor's tumor and stop the rapid growth. 

We've decided to try this for now and decide on an investigational protocol when we have to cross that bridge.

Again, one day at a time!!!

I have to tell everyone, for anyone who knows me they know I love to give hugs!  Well, today I was actually "Out Hugged" by none other than the doctor herself!!!  It truly meant the world to me!!!

We have been so incredibly blessed by all of the amazing doctors, nurses and medical teams that we have come in contact with.  I truly believe that many prayers were answered today in that somehow James and I were able to make the right decisions and to find some peace in doing so.

We still believe that God is working His miracle in Connor, it's just taking a little longer than we would like.  With that said, Connor is going to continue to amaze every doctor he comes in contact with and he will continue to leave them scratching their heads!!

Just wait until they see His miraculous healing!!

God Bless,

James, Brandy, Mackenzie & Connor