Week four so far
Week four of radiation has begun with a bit of a hitch, mainly in deciding whether to continue radiation treatments or not. We began to question this treatment plan after the meeting with Dr.Gore (the clinical coordinator) on Friday. The term “Radiation Necrosis”(death of tumor and normal brain cells by radiation) was not an unfamiliar one to us, but it took on new meaning when it was explained that children who have a lot of necrosis following radiation often do not qualify for any clinical trials. The reason being that these trials are focused on new drugs and their ability to affect (i.e. kill) live tumor cells and stop them from reproducing. Nothing can be done if the cells are already dead or dieing but the body is unable to keep up with clearing these cells away. This caused us some concern, but after talking with another oncologist, we decided to continue radiation based on where Bens at in his treatment and the likelihood that radiation still offers a better chance at quality of life than not radiating. The clinical trials that Dr. Gore discussed were here in Denver and still very new (only in Phase 1). We have to get through radiation and a 6wk. follow-up MRI before clinical trials of any kind become an option. On a better note, Dr.Foreman gave the OK to reduce the steroids from 12mg to 8mg. This is good news, now we just have to pray that he doesn’t begin to regress due to the lower dose.
Today was defiantly one of his better days, with some decent energy, less irritability, more strength, and slightly better coordination. He also took a much greater interest in his surroundings and with the whole “Make-a-Wish” discussion. Hopefully this will continue since the Wish Grantors are visiting tomorrow to get Ben’s wish. I still don’t have any idea what that might be. We’ll let you know!
In one of my earlier posts, I mentioned a Dr. Banerji from India who had attracted the interest of some major cancer institutes due to his homeopathic remedy and its possible curative effects on gliomas (you can read his paper here). Well, I’ve been corresponding with him via e-mail, and he will be in the US from Oct. 12th to Nov.4th and he has indicated that he would be glad to meet with us! The closest city where he will be spending some time is in Kansas City where he will be staying from Oct.20th-25th. I sense a road trip in our near future (Ben will be done with radiation by this time).
Again, I want to thank everyone for their love, prayers, and support. Many people have commented to us how strong we appear to be in the face of such a cruel card to be dealt. This absolutely would not be possible without such a wonderful network of people who care. We draw upon this network for our strength and hope.
They say that love heals all wounds; I hope to god they are right!
Melinda
