An Adventure Through Tall Grass

Day 29

I sat with Brayden as they put him under. Another spinal tap, or lumbar puncture if you prefer the less scary terminology. Today is chemo and marrow testing to see where he is at and which direction we are going in with treatment. His labs have been coming back with numbers that are good, but it is likely that he will be looking at at least a few more months of lumbar punctures and treatment.

As for how he is doing, I am sure you can tell from the picture that he is puffy… to say the least. His tummy is distended so much that his belly button is nearly flat. You can see the veins just under his skin, and his face is almost unrecognizable other than his eyes and that beautiful dimple. He tells you he feels good or fine, but he sleeps a lot and when he isn’t sleeping he is still worn out. There are sores all around his lips, making his chin and surrounding skin pretty sore. It’s hard to keep a 7 year old from picking at itchy sores, by the way. He eats a lot, which is good. And he plays when he is not exhausted. Thank goodness for legos, the xbox, and all of the great toys everyone has been sending his way!

Also new, but not as noticeable yet, is his hair loss. It comes out a few strands at a time if you run your hands through his hair and Joe says there has been some on his pillow in the mornings. I imagine we will cut it short soon to avoid the drastic step from long hair to no hair, but in all honesty… it seems to be harder on me than it is on him. Maybe he just doesn’t show it, but for me it makes this whole thing tangible and visible. Sure, all the other things we have been doing and all the other ways he has been showing his illness are tough. But nothing says “my baby has cancer” like his long blond hair in your hands. I didn’t think it would bother me so much, but it was hard not to cry right then and there. Hopefully, him being a boy and having a history of a closely shaved head will soften the effect it has on him, though I imagine there will be stuff he won’t say just like when I know he is tired or not feeling well and he says he is good.

Today is the last day on steroids, which is a big part of what is making him so bloated and puffy. I am hoping it will make him feel better to get off of them, but  I also know that they were helping to lessen the trauma/inflammation of the chemo to his body and stopping them may have the opposite effect of what I am hoping for. 

I feel incredibly helpless. A major part of that is being forced onto me, so I am working on not hearing it, but a good chunk of it is because I can’t fix it. I mean, we are trying to fix it but fixing it makes him feel worse, and I CAN’T fix that.