It's Getting Harder

It's getting harder to maintain a positive outlook on things. Another little boy with Medulloblastoma has lost his battle. I don't know the details, but his name is Lucas West and he was being treated at a hospital in the Chicago area. There was a post to his CarePage on Christmas Eve saying that he had limited time left. Then messages of condolences started showing up on his message board. It seems that most of the children we are tracking through CarePages are not doing well.

I know in my mind that what is happening to these other children with Medulloblastoma will not necessarily happen to Elias, but I am still sad for these children and their families and scared for Elias's future.

I see some troubling signs in Elias lately. He seems to be more unsteady on his feet. A few times when he has been speaking, his voice has gotten flat and monotone. He has been holding his head down more. When I see these things, I think that the tumor might be back. From what I have read about other children with Medullo, it could be something else - like swelling in the brain as a result of radiation. I need to wait and hear the results of the MRI he had on Friday, but I can't help being worried while I wait.

I went to Chris on Thursday night to tell him about my fears. It was something I didn't even want to speak out loud, but after retreating to the garage to cry, I felt I needed to share it. When I told Chris, he said he had noticed the signs as well and it had been troubling him. The two of us began an emotionally draining dialogue about our fears and concerns.

Chris confided he is afraid that this was our last Christmas with Elias. I admitted the thought had crossed my mind that I might be left with three children, instead of four. Chris mirrored my thoughts when he said he has not given up hope for Elias, he is just preparing for what could happen. Chris went on to tell me that he feels he has to do some grieving now, because if Elias were not to make it, the grief would leave him incapacitated if he had not already done some grieving.

Chris went on to say that he feels very blessed to have had Elias for as long as we have. He also feels that we are lucky to have the chance to say goodbye to Elias, if that day comes. We have friends that have lost children in a sudden and unexpected way, who never had the chance to say goodbye.