Here's the latest update on Stephen for those of you who are following along with his journey battling AT/RT brain cancer. His parents keep an online journal for his friends and family to read, and this is where the updates come from. He is such a little fighter, and his family amazes me every day with their strength and determination. My heart absolutely aches for them...please continue to keep them in your prayers! Thanks. :)
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There are days that I wonder if a person could actually run out of tears. I'm sure that over the next few months, I will test this question many times.
Today after Stephen was sedated, I went to get something for lunch. I passed his radiation oncologist in the hall as I walked. He stopped me and told me that he spoke with the radiation team and they have put their foot down. They will not allow him to do Stephen's radiation treatment the way he had planned. They have told him NO! I asked, once again, does this mean that when we stop treatment, the tumor will grow back more quickly than it would using your method? Yes, that is exactly what it means.
They have decided that there is no way to cure Stephen so using the more aggressive treatment isn't necessary. They believe that no matter what they do, the radiation will not get rid of the tumor so they might as well not do damage to surrounding areas. As I mentioned last night, this seems counter-intuitive to me. What does it matter if they damage something else if they know that this cancer will take his life? I want pain relief for my child for as long as possible.
After the quick conversation in the hall, I hurried to a private place and broke down. I sat, bent forward, watching my tears hit the floor. I watched a puddle form and wondered how I would ever get the tears to stop. I sat and wept for a while. I then got out my phone and headed outside to find a phone signal. I called Brent and told him about the decision the radiation team had made. I stood outside under an overhang and cried to Brent as the wind blew sheets of rain in different directions. It is always raining when we get bad news.
For the rest of the day, the tears have come and gone. My face turns bright red and swells up when I cry so I didn't go unnoticed, even when I had stopped crying. I let the nurses hug me but I didn't tell them why I was crying. I didn't want that awkward moment when they realized what I was telling them...the radiation doctors have sentenced my child to a painful death. They never quite know how to react to bad news. They always try to stay upbeat and positive and I just wasn't feeling very upbeat.
After much thought and consideration, Brent and I have decided that we are going to discontinue the anti-fungal infusion. It is messing with Stephen's blood chemistry too much. He is now on two different supplements to keep things under control. Just yesterday he started shaking an twitching. It is hard to explain but he just can't stop moving. This could be a side effect of low magnesium but after a few doses he is not improving. In fact he is much worse today. He has also been very confused today. He spent most of the day confused about where he was, who he was with and where we were going. He asked me a number of nonsense questions that I could never quite understand only to tell me he forgot what he was asking.
Regardless of what the scans show tomorrow about the yeast in his head, it is VERY unlikely that we will ever get to the point that we would start chemo. For that to happen, the tumor in his hip would have to get to microscopic size, the yeast nodule would have to be surgically removed, and a new shunt would have to be placed after the yeast surgery and further yeast treatment.
I think for now we will finish radiation, the new way, and watch the rest of Stephen's body for metastatic disease. Most likely, by the time we are done with radiation, the cancer will be somewhere else, if it isn't already, and we will come home. We will hope and pray that the tumor in his hip will have been shrunk enough to give him some time without pain. We just don't know what to expect.
We are both looking forward to Brent and the kids coming. Libby made a count down calendar for Stephen to mark off the days until they get here. We can't wait! HURRY, HURRY, HURRY!