Texas Bound

We leave Sunday for Texas. The boys think it will be a fun vacation, and we are going to try to make the best of it.  We will try to see the Alamo, the space station, Six Flags, and whatever else looks fun. 

But the real reason we are going is for Andrew.  We will be spending seven weeks in Houston for consultation and then radiation of Andrew’s eye orbit. They have a specialized radiation beam which is more localized and specific--- important when you are radiating near a two-year-old brain.

Some days I still have to slap my face to wake up. Is this truly my reality? Am I really taking a plane to Texas? To live WHERE? For HOW long? WHY???? And it is all with the desperate hope that this will be the last trip to Texas. There is another family there, right now, with their six-year-old son, with this same cancer, in the same place, planning for the removal of their son’s eye and orbit. His came back. After months and months and months of chemo, and weeks and weeks of radiation, it came back. Their story haunts me every day. Cancer is truly demonic.

While trying to pack and get ready, we have also spent the last three days in the new hospital for chemo. Their network doesn’t allow me to write on my blog page for some reason, so I have been writing the old fashioned way…with paper and pen. I think there may be something more emotional about that mode. I don’t know, but I sure found myself crying more. Maybe I just finally had the personal space to let it out.

I see other mothers and fathers wandering the halls of the hospital. Some have been here for 5 years seeking to make their child well. They introduce themselves and want to tell me their story. I want to cover my eyes and ears. I will too easily slip into despair. It is hard enough for me to stay hopeful and positive. My happiness is too fragile.  One day at a time. One day at a time.  Head down.  Don't look up.

Other than the sad stories which surround me, this new hospital is doing wonders for my sanity. I no longer feel like an oppressed prisoner. There is space for us to be a family. The boys can come and stay as long as we want without feeling like they are annoying other people. There is no loudspeaker at 8 pm telling us that “all visitors (daddies and brothers) must exit the building.” In addition to having my own room, I also feel respected. They seem to recognize that parents are people (imagine that), that this is horrendously difficult, and that parents can be part of the solution and not inconvenient attachments. I do not like to be ordered about (in fact, it makes me rageful); I like to be included in the conversation. This new hospital gets that.

Back home today.  One more day to recover and off we go to Texas with a hope and fervent prayer that five and a half weeks of radiation will get the job done. With the prayer that the radiation will not distort his face forever. With the prayer that we will NEVER EVER NEVER EVER have to come back again. And that we will never again be haunted by this disgusting, demonic, hateful cell mutation. How dare it invade my child.