Thank you for coming to Maria's blog site. We will try as hard as we can to give you a lot of information on what is going on.
Maria was diagnosed on Saturday 4-1-2006 with a Diffused Intrinsic Pontine Glioma by the Cleveland Clinic. Since this is a rare tumor, we have had to call every major hospital in the country. As of tonight, we still do not have enough information to make a decision.
We did not leave for St. Jude's today like someone asked me. We still have not spoken directly to St. Jude. That should be tomorrow. We have spoken directly with the top doctors at many institutions. We find it comforting that the actual director or section head or chief surgeon all talk with us directly and usually for and average of 40 minutes.
This week we have sent Maria's MRI to about 10 institutions. We have taken Maria to Rainbow Babies and Children's for a second opinion. We had a lot of help from a lot of friends to get a meeting with the world famous Allen Cohen. He spent time with us and a team of doctors looking over Maria's MRI and discussing our options. Not surprising, they diagnosed Maria with the same tumor.
So, since then we have talked with Boston Children's Hospital / Dana Farber Cancer Institute, Children's Memorial Hospital of Chicago, Duke Cancer Center, John Hopkins, MD Anderson, Children's National Medical Center in DC, Cleveland Clinic, University Hospitals and probably more.
We have looked at over 50 different studies and we are still looking. We know that we have to make a decision, but the more we learn, the more we have to make sure.
We should have a final decision by the end of next week and Maria should start treatment, no later than April 17, 2006. -- end of post