Saturday, July 15, 2006


Okay, so we know what we're dealing with now. That's the good news. Our attending doctor, Dr. Bracho is on vacation this week, but we are in the very capable and hard working hands of his colleague and the Chief of Pediatric Hematology/Oncology, Dr. Shad. Dr. Shad found a new clinical trial that has been running at St. Jude and just opened up last week for Georgetown University Hospital (GUH) and an affiliated group the Children's Oncology Group. This trial almost appears to have been written for Sophie specifically. It includes chemotherapy to treat her tumors and additional steroid therapy to treat her neurological issues associated with the OMS. What an amazing find on Dr. Shad's part. I think she was even more thrilled that we were!

The Doctors, and staff, at GUH are truly amazing. They treat us as part of their family. After the radiologist found the initial tumor and we were referred to the Lompardi Cancer Clinic, we have been taken in and taken care of like nothing I have ever encountered before. We are so very lucky to have this awesome team on our side.

We spent the day on Friday at GUH and the clinic getting test done and trying to work out scheduling additional tests to meet the protocol requirements and our trip to Illinois. This next week is going to be a doozie!

Monday we will go to the clinic for a final review and signing of the medical paperwork, then we will go to our neurologist for developmental testing and an analysis and staging of the OMS and ataxia (that's the symptoms that started all of this!) Then a check back with the clinic to get our schedule for Tuesday. So far we are anticipating that Sophie will be registered as an in-patient Tuesday morning, and scheduled for surgery to have a central line and a Hickman device installed in her chest and a spinal tap. This will help her tremendously in receiving medications, blood draws, anesthesia, etc. As long as the line is in, she won't have to be stuck for IVs again. Whew! After the line is placed, she will get another nuclear injection and then a bone scan later in the day. She will remain over-night to do a 24-hour urine collection and then released on Wednesday morning. From there we head to the airport at noon to catch a commercial flight to Peoria, Illinois (through Atlanta) where we will rent a car and drive to Springfield, Il - only an hour and a half drive - much better than Chicago at 3-4 hours!

We've lost our good rate at the Hilton hotel, so I'm hopeful that we can get into the local Ronald McDonald House. They tell me it's right across the street from the center we will be visiting - convenient! We'll spend the day at the National Pediatric Myoclonus Center seeing the national (and probably international) specialist Dr. Pranzatelli. Sophie will get another spinal tap for specialized testing at the center and a medical and neurological work-up as well. This trip will help us to decide the best course of treatment for the ataxia and underlying neurological issues, and to ensure that we act quickly and appropriately so that the symptoms do not worsen while Sophie undergoes treatment for the tumor.

Okay that is enough for one post. You get the idea, tests, tests and more tests. All of this is required to begin treatment on the protocol and is basically to ensure that Sophie is in the best physical health when she begins the chemo to achieve the best results. We fully expect to be looking back on this at her third birthday as a distant memory. So anything we can do now to hasten her treatment and recovery is a worthwhile investment. Anything for our princess!

Check out today's pic. Zach decided to jump in the tub to scrubadubdub with his little sis. They both had a blast, and I got all wet! Enjoy!


Mike Shelby said...

Allison - Just letting you know that you are continuously in my thoughts and prayers. You have an amazing inner strength that Sophie has as well. -Mike

N said...
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Andre & Jennifer said...

A busy week for you guys is an understatement. Please let us know if you need anything. Have a safe trip. Many prayers and blessings coming your way - Jennifer and Andre'