Jake is on his way soon back to Childrens Hospital. Hopefully just as an outpatient to get him more IV fluids and started on steroids to help with swelling. He has started to have problems again keeping things down. We are hoping against hope that it is swelling from the treatments and not more growth. We have not heard back yet from the Doctors in India but I suspect we will at any time. As I mentioned there is a descrepancy as to the results. There appears to be more growth since the August 20th MRI, not with the main tumor but in other areas. The question in my mind is how much of that occurred in the 16 days of no treatment while we were traveling to India. Given the agressiveness of the disease and that MRI's are done every 28 days it is possible that the growth occured before we started treatment. There are also other obviously frightening possibilities. I would have liked to have had the first day of treatment in India which has a accompanying MRI used as the reference but at Rady apparently they are not able to read the MRI format. So a copy of the new MRI has been sent to India for analysis.
Either way I suspect the treatment will be the same, that of Steroids and fluids.
One thing that seems the consistent is that Frank SR. which was the main target of the therapy appears to have been stopped and reducing in size. In a worst case scenario, I will hope that if there are new problems that we will have an option to go directly to the research center in Bangalore for more treatment but we will not know anything until the MRI is analysed by Dr. Kumar.
I should note that I remain absolutely confident in the effectiveness of the Cytotron. There simply remains question as to whether we need more treatment and if it would be effective in this case. Even though this technology is in it's infancy I bet all I know on it as a therapy and eventual cure for many. It is difficult when anything trying to treat this disease is so new and cutting edge. Time and experience will show that I am correct about this. Cytotron will continue to help others I hope it can continue to help Jacob.
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3 comments:
Jake ~
I hope you feel better soon. I'm sorry that you are having to deal with this after all you've been through and the positive results of the Cytotron treatments. I will keep you in my prayers as always and cross my fingers on the results back from India. Hang in there!
Hugs,
Betsy
Dan, I think you views are logical. The growth of the smaller tumor(s)would have been expected during the period of non treatment and since the last MRI. To expect otherwise wouldn't make sense. Now, hopefully the treatment will inhibit additional growth. It would be more informative to review the results of the next MRI and compare those with the onset of treatment of the smaller tumor(s). Wes
Dan and Jake,
I spoke with Jayne at Rady's yesterday. My heart sank, but I, like the rest of your friends and supporters continue to hope for the very best for Jake. I am out of the office today until 12/1 but will return Tuesday 12/2. I told my supervisor and the two other nurses I work with to keep me posted and to help with your needs. Our case management team is small but we function like a family. Jake is part of our family. You are in our minds, hearts and in our prayers. The best I can do is hope that this is something that both the doctor's at Rady's and Dr. Kumar and Sibia can work on.
It's Thanksgiving today and I give thanks to people like you and Jake for the strength you continue to share with your blog and the world.
Joe
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