Time for a new plan

Hello all,

Unfortunately, today's MRI results and Doctor's visit brought more bad news.  The pelvic tumor has not been responding to the new chemo.  In fact, it has grown 10 - 15% since the last scan a month ago.  So instead of proceeding with chemo today, we have a new chemo plan - Scott is being moved to a new chemo protocal that is used by Ewings patients when the first protocal is not creating a positive response.  These will be two brand new chemo drugs to Scott.  He'll start this treatment on Monday.  It will be for 5 days, but it will be a shorter duration of time to treat, so he can have the treatments in the Deerfield office and come home each night.  One of the chemo drugs will be administered via IV, the other via tablets.  He'll do this next week, and then again in hopefully 3 weeks (4 if his counts are too low).  After these two cycles, we will again see if the tumor has stopped growing, or even better, starting to shrink.  If there is a positive response - he will likely keep going with chemo as much as he can tolerate.  His Doctor says there's a 50/50 chance the new drugs will have at least some positive affect.  If there is not a positive response, our options are very limited.  Really, the only option at that point may be a clinical trial. 

If we go with a clinical trials, there are no guarantees and it appears the only active ones in which Scott meets that criteria are out of state.  We would have to either travel to there frequently or relocate during the trial.  It will be hard, but I know we'll make it work - we have to. I know you guys are asking me through the monitor "what about surgery or radiation??"  Surgery is not recommended by his Doctor because of how long he would have to be off of chemo in order to prepare and recover - and he will need a lot of recovery time.  He said there's really no point to surgery if the cancer is living elsewhere in his body, and we understand that rationale.  As for radiation, he cannot have radiation and chemo at the same time - it will be too toxic.  Additionally, he'll have the same issue with being off of chemo for too long and the added risk that the extensive amount of radiation he'd need will prevent him from being able to receive more chemo afterwards, if he needs it.

We are also looking at second opinions and may soon travel to the Moffitt Cancer Center in Tampa for a consultation - they have a Sarcoma Center and they apparently have a Ewings Specialist.  I don't yet know how much he's worked with adults versus children, but we're trying to get them to evaluate Scott's records without have to make an very painful car ride for Scott.  If they recommend other options - we would then head over there.  Sylvester in Miami and a very good place for treatment, and we know his Doctor is following all the known protocals that produce results for Ewings patients - it's just that Scott's body did not respond to the first round and probably built up a resistance to those drugs.  We're going to explore all the options we need to to save his life.  Scott's battle is getting even more complicated, but is by no means over. 

So far, we're still doing okay and don't really need assistance.  If the time comes that we travel for a clinical trial, you guys may see the requests for help coming pouring in.  :)  Please keep sending your prayers, positive energy and crossing your fingers.

We love you all and are so grateful for your support.  Just keep swimming!

~Amy & Scott