IMPROVEMENT!

September 1, 2011

Our update has been a while in coming, but mostly because we have been in a waiting pattern ourselves.  Josie had and MRI on August 22, we found out preliminary results the very same day, but wanted to wait to post anything until we knew more.  We were told that it would go to the Tumor Board that same Friday, but when I called to check on the results of that meeting, I was told that Josie's case was not even on the agenda for the day.  There was a miscommunication along the way, so we continued to wait.  On Tuesday of this week, we met with Josie's Oncologist and viewed the actual MRI. 

We are pleased to say that there is improvement in Josie's brain tumor! 

There were some spots that they were watching in her left side of her brain that have gotten much smaller.  Both the chemo and time are working in this area.  The main source of the tumor, which had begun primarily in her right side of her brain, has  now settled around the midline of the two hemispheres of her brain. This midline area is a little murky because it is part tumor and part scar tissue from surgeries.  The tumor portion still has part of the original tumor as well as the cancerous portion.  This area looks a little improved, but because it is a combination of things, it is hard to know exactly what is going on in this area.  Over time and with her chemo regimen, the hope is that the scar tissue will continue to heal and shrink and the tumor will continue to get smaller. 

The plan is to continue on with the chemo that Josie is currently receiving, as long as she is tolerating it.  She does tolerate it pretty well, the first 48 hours her stomach is rocked quite a bit, but then she seems to get back to normal.  Josie will have MRI's every 3 months, so the next one will be in November or December.  This is standard for brain tumor patients, and will help us keep track of what her tumor is doing. 

We are very thankful for improvement and ask for continued prayer for this tumor to go away.  We know that Josie is doing well just by how interactive she has become,  and for that we are again very thankful. She is a sweet baby and is developing such a fun little personality.  She is still not taking much by mouth, but she is getting her nutrients through her GJ tube in her stomach.  The tube being out of her nose has been developmentally the best move Josie could have received - she has learned how to make wonderful noises with her voice and can communicate so much better.  

Josie's birthday party was a blast!  Thank you to everyone that came and celebrated with us.  We went through 2 full size sheet cakes!!!  We loved celebrating Josie's first year of life and she had a great time too!  Looking forward to many more birthdays with this little lady.

There is so much to be thankful for and we are taking these moments day by day.  Each day is a reminder of how far we've all come this past year.  We look forward to the this coming year and wait to see what God has for us. 

Blessings,

Marc & Darcia