Just a quick update on the Nifurtimox trial in Orlando.
We have been in contact with Dr Eslin there all this week discussing options, as well as the drs in NY, at All Children’s, and at St Joes, and we have settled in on a course of action including that trial. I just booked a hotel in Orlando (yahhhhh, insurance doesn’t cover THAT, ha) – we’ll be going there for 5 days starting Sunday night and have appointments Monday starting at 11am. Robyn’s mom and step-dad fly in Sunday morning, and we’ve got 24 hour nursing here as well, so they will watch Charley while we are there. The trial is done at MD Anderson in Orlando, and requires they do their own scans – so this coming week we’ll just be repeating the scans we’ve already done this week, and meeting the drs to discuss scheduling and Ezra’s case, etc. Come the following Monday (the 18th) we’ll begin the chemo that is associated with the trial, as well as taking the Nifurtimox. The Nifurtimox is simply a pill – according to the trial he’ll take it daily for 6 months. The initial chemo is in addition to the pill, and only lasts a week, 5-10 hours each day. We’ll get a hotel again that week, and be home this coming weekend in between.
This week while we’re in Orlando we’re going to try and do Disney World on Friday. We’d like to do as much fun stuff with Ezra as we can. If any of you have any hookups at Disney World or know of any cool things there we can pay extra for or arrange for that a 2 year old would like (breakfast with characters? stuff like that) please let us know. We’d like to do some stuff to have a ton of fun with Ezra while we get this trial started. We will do the parks again the following week while we’re there – maybe someone knows a deal we can get on annual passes? If this trial does work, he’d need a weekly clinic day in Orlando at MD Anderson.
The trial has been proven to prolong life up to 2 years in cases like Ezra, when effective. We are praying God does a miracle, and there’s always a chance some new treatment could come out in the time this may give him. As it stands, there’s still no cure for his current situation.
We are tired, and we are praying to God for a miracle. We ask you keep doing the same… and we so appreciate all the support pouring in.
We know someone in Disney reservations and James is calling them as I type to see what they can do for you. At the very least, if you wanted to stay there on Disney grounds, she can get you a friends and family discount. I’m sure they have some sort of make-a-wish type things that she might know about. We’ll have them contact you w/info.
James did contact me just like Ann said and I would love to get you guys into the park and some character meals that day. Give me a call 813-967-7380. Can’t wait to hear from you and hook you up with some Diney Pixie Dust.
Precious family, we are praying for you.
We are in Tampa, but our family (my parents) have a timeshare in Orlando. If you don’t have hotel arrangements for your second week yet, let me know and I can see if we can get you booked into one of the timeshares (if they are available) so at least you could stay for free!
Also, make sure you call Guest Services at Disney or go to Guest Services as soon as you enter any park. We have a son with Down Syndrome, and they give us a “red card” which basically gives you quick access to all the rides. We have found the Disney staff to be outstanding in helping out in circumstances like the one you are experiencing. (not sure if “circumstance” is the right word! 🙂 )
You can email me at mollyvoth AHT verizon DAWHT net.
Blessings to your family!
I have a contact in Orlando that can probably get you set up for Universal. Let me know if you are interested. I have already contacted her and am waiting to hear back.
I am sure you are set, but an option for affordable, if not free, housing in Orlando is the Ronald McDonald House (there are two, one near Arnold Palmer and the other near Florida Hospital with Disney’s Children’s Hospital) and they often have offers to send families to the parks too!