Whats important now: Everything has changed. Gregory will be coming home this week. Hopefully on Wednesday. Were going to be starting Chrismas decorating almost immediately. Christmas will be coming very early to our house this year. Ill post more about that as we figure it out. I have a request for my boys. We were going to take them to go see snow this year, we even bought them snow pants when they went on sale last spring. Weve been talking about this for a while and I cant make it happen. So Im asking for snowflakes, paper ones, theres lots of ideas online. Im going to hang them from the ceiling and make the boys a winter wonderland this year. Weve been asked what Gregs favorite foods are. Its a lovely thought, but Greg cannot eat or drink. Gregs mind is entirely intact, but virtually everything controlled by the brain stem is affected. We are desperately hoping for a miracle, please pray for our son. Below is the update I wrote before I realized that whats important now is what we CAN do, not what we cant. Important update: I should rephrase what I said about fear. Every step along this path has been done with love. What I meant was that after watching my son go through repeated surgeries, recoveries, therapies, and the endless vomiting... I have to say Im terrified of what might happen to him next. Thats why Mike was in charge of assessing options, we both did the research but Mike was more able to keep a level head. I didnt mean either Mike or I were running away from this. I said was and it wasnt a typo. Things have changed. Or rather they havent changed but all the pictures were put together for the 3D render of the tumor for radiation and suddenly the conversation is different. I guess the radiation oncologists who reviewed his case at all those proton centers already knew, but we didnt because we didnt ask the local radiation oncologist to review his case. We were focused on taking him to proton therapy because of the greater chance of a cure and the more precise nature of it leads to fewer long term side effects. Since chemo failed and we were told to have the second craniotomy and go directly to radiation that was our plan. Which was why we went crazy shipping Gregs scans, reports and slides all over the country to proton centers. Last Wednesday Greg was supposed to start radiation therapy. Instead Mike and I were asked to attend a family meeting that consisted of doctors, social workers, and palliative care. We were told that the tumor that was intruding into the brain stem was more like a tunnel than a needle and that irradiating it would kill Greg. Likely within a week. This is because there is a large section of his brain stem already destroyed by the tumor (which is apparently why his lung function has not recovered) and the parts that the tumor tunnel is through control his heart which is why his heart stopped during the first surgery when they tried to remove it. The part on the outside of the brain stem -surgeons dont operate on the brain stem it self. Any inflammation or growth of the tumor will stop his heart. Unfortunately that is how radiation works, tumor cells become inflamed and surrounding tissue is damaged even if the structures are normal. Gregs brain stem is no longer normal. This didnt happen in two weeks while we tried to get him to proton therapy, or even in the month since his last surgery. It may have been untreatable before the MRI that identified it Sept 9th. Basically there wasnt a choice, just the fact that what Greg needs is a miracle and radiation therapy cannot give us one. If there was a chance we would take it.
Posted on: Tue, 26 Nov 2013 04:51:15 +0000
Trending Topics
Recently Viewed Topics
© 2015