Monday, July 2, 2012

Answering your questions

We have been met with several questions and thought it would help to clarify.

The clinical trial  "protocol" ( Novel Combination Chemotherapy for Localized Ewing Sarcoma) is in Phase III. What does that mean?   There are several phases to protocols. You must complete one phase before moving on to the next. Phase I must prove that it is safe. Phase II must prove that it is the same as the treatment that is currently available. Phase III must prove that it is better than the current treatment available.

Why do the trial and not go to a "specialist" ? IF for some reason another surgery is needed, we will indeed go to Boston or Houston for surgery. We will not handle that locally. We are blessed that the surgery to remove the cyst went so smoothly and that the surgeon was able to remove everything, but we won't push our luck. Since the trial offers the same treatment or better as the specialists, we feel comfortable with that course of action.

Why not do alternative treatment  in Tijuana, Mexico, I will have to quote Zack on that one, "the only thing I want from Tijuana is booze and hookers," Like I said he has a sense of humor, twisted at times..... like his mothers. (hey he is a 16 year old with hormones). We totally appreciate alternative treatments, just not in this case.

When does he start chemotherapy? and how long? That is yet to be determined. We will know all the details when we visit the team of Doctors next week, and have the PET scan results. We are hoping that we don't have to have it for the full year since the MRI and blood work came out so well.

How are his friends handling all of this? Zack has an amazing group of friends. They are rallying around him and though he doesn't talk about it much (he's actually tired of hearing about it) they have all come to me or Frank at one point or another and discussed what to expect. These kids remember a young senior girl that passed away from cancer four years ago, and I remind them that this case is very different. Every case is different. 

What are you telling him? We are telling him everything. This is his body, his life and he deserves to know every step of the way. Yes, we still are in charge and responsible for his well being, but it is up to him to understand what is happening and what to expect. "We" tend to forget that he is still just 16, due to his size  (6'5")  but he still has fears, just like any of us would.  We are telling him to keep the language and thoughts positive. You do not HAVE anything... you had... and it is now gone...

What is the best advise he has received? I have to give that one to his Uncle Bob "milk it, milk it for everything you can get out of it", unfortunately Uncle Bob doesn't realize that Zack LOVES a lot of his collectables. HA HA...

What can we do?  Pray, Pray and Pray... I have never stopped believing in prayer. Don't throw religion at us, please. Prayer know no boundaries. Keep the language positive, words are very powerful. We KNOW and FEEL all the love and are so appreciative for your emails, notes, and phone calls. 

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