With the help from friends and family, we were able to go to DC. Washington DC is the home of NIH (National Institute of Health), where they are doing research on Trey's tumor. We met with Dr. Gilbert yesterday for about three hours. He explained more to us about Trey's tumor, some we knew and some we did not. He described Trey's new tumor with us, and at this point it is inoperable. Trey's previous tumor was on the outside of his brain stem growing in, where this one is on the inside of his brain stem growing into his brain. He said surgery would be a huge risk at this time and would advise us not to go that route. He informed us of a new study that they have in the works, unfortunately this study is just in phase 1 (small animal testing). However he did inform us of another option, as radiation did not work for Trey.
Dr. Gilbert said it would combine two different chemotherapy's, both being oral. He said he has had good results with this combination chemotherapy. Although there has been positive outcome with these therapies, treatments are very expensive. His plan is to get Trey on these treatments for a possible 6 month to 1 year treatment plan. If the oral chemotherapy's are not working the next step is intravenous chemotherapy. With this being said there are options still on the table and the fight is still going strong!
After discussing options with Dr. Gilbert, he asked where we were from and got to know us a bit on a personal level. After the personal chat he asked how far away did we live from the Mayo clinic, we laughed and explained it is about a 5 minute car ride from our home. He wants to do our treatments through Mayo with Dr. Jaeckle. He is comfortable with Dr. Jaeckle on a personal level and considers him a close colleague. Dr. Gilbert knows Dr. Jaeckle would follow his orders and would communicate any complications that may occur during treatments.
This visit was last minute and we were lucky to be able to have the flexibility to be able to come see him. It gave us a bit of an emotional ride throughout the visit, but we feel we are on a good path. Happy to be able to do our treatments at home. Today we are being tourist and exploring what DC has to offer.
"No relationship is all sunshine, but two people can share an umbrella and brave the storm together"
Thanks for all of the love and support through such a crazy time in our lives. We are all in this together.