Update From India

I have heard back from India regarding Jakes final MRI and the effectiveness of the Cytotron. My feelings as well as the feelings in India was that Cytotron was successful at least at containing the tumor during treatment but the disease got the better of him when we got home. It is unfortunate that only I was able to see the improvements in Jake and no one really saw this in the U.S. except for the video of him walking down the hall by himself in the blog post "Detailed MRI Results". The pictures of Jake in India and his physical improvements in color and strength, especially while being able to be off all chemotherapies and medication leave me with no doubt that this treatment was effective at least to some degree and will improve over time.

I sent the following letter to Dr. Sibia to thank him and Dr. Kumar and to summarize my feelings:

Dr. Sibia,
Thank you for taking the time and perserverence to get some answers. I will look forward to Dr. Kumar's comments.
My feeling is still that Cytotron is an excellent therapy and we may have had better results if we had tried it first rather than last. It is unfortunate that it is not available in the United States at this time. Still with that being said, I believe that in order to combat a glioblastoma it will probably be necessary to be able to do greater coverage of the entire brain simultaneously due to the diseases tendency to spread.. I believe the areas we treated worked at least during treatment and that his eventual loss was due to tumor growth after treatment was stopped. If the machine was in the U.S. he could have continued treatment. It will be interesting to see where we are in 5 years with this technology. I suspect that the areas of simultaneous treatment coverage will be increased. I hope to see the machine in the U.S. one day.
I also believe I should have had him on hyperbarics during his U.S. and India treatment. I should have put him on oxygen during the trip home and stretched the days out so it was not so hard on him. In addition, I should have had a mask on him as he caught some type of fever in the airport. He never really recovered from the trip. I do not blame myself for these oversights. In the end, the disease probably just got the better of him. Unfortunately we were all forced to try to learn too quickly and make decisions with no experience. We never dreamed of having to make decisions like this when Jake got sick in 2006. Only time, research and experience will teach us how to battle this disease.
That being said, I will never forget my times in India. They were some of the most wonderful and most difficult times of my life. I am forever changed by the experience. My views on life and what is important have changed for the better, forever. It was very rewarding to see Jake's walking improve, watch him get some sensation back in his legs and just to spend so much time with him when he was not feeling effects of any chemotherapy. After treatment every day at 3pm we would lay on the bed in the hotel and Jake would rest his head on my shoulder as we watched an episode of Star Trek. Both James T. Kirk and Jake were always battling against impossible odds. As Jake would lay with his head on my shoulder I would contemplate how wonderful it was to be able to spend this amount of time with my son. I feared that it might only be for a short time, the fact that he was fighting a grade 4 glioblastoma never left my mind.
In the end, Jake was able to be surrounded by all the people he loved and who loved him. I am not really a very religious person but in the times after Jakes death I have had signs that Jake is now happy and well. Some signs completely unexplainable by logic. I have also been fortunate to visit a renown psychic medium and the experience has left me convinced that Jake is fine and that I will see him again one day. I believe it would be short sighted to think that there is only this life. Jakes life touched and continues to touch others. He has made change in people and the world. Given a choice, I would have rather that he taught people less and won this battle or never got sick at all but this is out of our hands.
I will always remember fondly our morning coffee and talks about life during Jakes treatment. You are a good friend and have taught me much. I hope to surprise you by walking into your office for some coffee someday. I hope that the Cytotron research continues to grow and help others and that someday I may be able to help with it in the United States.
Dan