Thursday, February 12, 2009

Next Plan of Attack

Everyone,

It took longer than we were expecting to hear back from Dallas' NO (Dr. Smith) about what the next step should be; however, she was at a conference in Atlanta and was able to discuss with other doctors Dallas' condition and get their feedback on what to do next.

We are going to begin Avastin plus Carboplatin, which was actually started today (February 12th). When Dallas did his intense chemo back at the beginning of 2007 he did another platin drug which he responded well to. This is why they decided to keep him on Avastin and try Carboplatin instead of the CPT drug...I have no idea what I'm talking about by the way.

They are discussing some other treatment options that my mom has done research on and which can hopefully be used as a backup. There is also a trial she just discovered they are doing at Duke on immunotherapy...or vaccines. Always before Dallas didn't qualify for vaccine therapy because to develop a vaccine, they had to be able to get enough tumor material to work with (and as many of you know his tumor is inoperable). It seems now that they are developing the vaccines through blood samples. Dallas' tumor may be too advanced to go this route, but we're going to discuss it with his NO in any case.

So, his bi-weekley schedule of going to Shands in Gainesville for 1 day of infusion will continue for the time being. His, along with David obviously, 21st birthday is coming up at the end of April. As long as he reacts well to this chemo (some possible side effects include a stronger attack on the immune system - aka low blood counts, loss of hair, etc.) we are planning on doing a trip to New Orleans the first week of May for their annual Jazz Festival or possibly a trip to DC to see their most favoritist sister ever.

My family and I appreciate all of the kind words you all have sent throughout this and the past two and a half years. Without your support this would be an impossible road to travel.

Best wishes,

Jessie

Friday, February 6, 2009

That Timmy Can Be A Real Jerk

Everyone,

It has been over a year. A year filled with good and bad scans, but an amazing year for Dallas in any case. He did really well in school in the Spring and Fall of '08, went to the Keys on a week long vacation over Christmas, got to see the the Gators win another National Championship game in Miami this January and was able to spend a week with his favorite sister in DC this past summer. Oh to be 20 again.

So, on to the Timmy update:

As most of you know, December's MRI showed a reduction in the size of the tumor which meant it was positively reacting to his current Chemo regimen of Avastin/CPT-11. Even his Neurological Oncologist, Dr. Smith, was pleasantly surprised.

Dallas' MRI Tuesday, February 3rd, however, was not so good. He has at least 2 new areas in the temporal lobe (Google it because I'll butcher any explanation) where tumor cells have migrated by way of white matter pathways from the original tumor site. Dr. Smith stopped all treatment Tuesday (he did not get his scheduled Avastin/CPT-11 infusion nor did he start his monthly dose of Temodar) while we search for a new treatment plan. Dr. Smith is going to talk with Dr. Friedman (Duke) and Dr. Fine (NCI) today as well as with another doctor at MD Andersen to see what their recommendations are for a new treatment and how to proceed.

Meanwhile, Dallas remains without symptoms.....in fact, he seems better than ever. Needless to say, we were all fairly shocked to find that Timmy wasn't going to continue to cooperate.

Hopefully, these amazing doctors will find a new path for us to travel and Dallas will continue to live a full life beyond the constraints Timmy layed out for him more than 2 years ago.

That's all for now. I'll try and keep you all updated over the next week or so as more news becomes available.

Love,

Jessie