Calm before the storm

We've been home now for 2 days. It's been nice to be home. We've cleaned, scrubbed, washed most of the house, even the fridge, so that we have a clean environment. Outside of yesterday's 4.5-hr visit to the proton center, and a quick haircut/Target trip for Jason, we have not left the house.

Soph has spent most of her time either on the couch or in her bed. She is still a bit wobbly, but is getting better everyday. She still has her moments of super frustration and anger. In a calm moment, she told Jeannie that before she went to the hospital, she could walk, but now it's hard for her. It must be so frustrating that our little energizer bunny Soph was always running around, running circles around everyone, but now her little sister is the one that is running ahead of her. But she is sleeping more, eating some (could be eating more), and enjoying being home.

We have a 2-hr consult tomorrow with Marianjoy Rehabilitation Hospital to start her rehab. She seems to have her strength, but her coordination, especially on her left side is lacking.

I think the next week or so should be fairly quiet, with minimal visits to rehab, but starting late next week or the following week of 12/31, will start the daily radiation therapy, which could be 2-3 hrs/day, plus clinic visits downtown. It will be crazy.

From a treatment perspective, we got word yesterday that considering the circumstances (pediatric brain tumor), we got the best possible diagnosis of classic medulloblastoma, with no tumor cells in the CSF. This is important, b/c her cure rate goes up, recurrence rate drops from 30%-35% to 15%-20%. And she will get a lower dose of radiation, which will be better long-term. Thank you for all of your prayers. With the maximum resection (removal) of the tumor, quick recovery from surgery, and the most optimal diagnosis, I'm beginning to think that God may want the best for our situation. My prayers every night aren't long, but they always end with asking God for mercy for Sophie.

We are home, but things are not the same. It's like a cloud hanging over our heads. I'm anxious about having to go back to work, and not being able to be here helping out. We are determined and will get thru this, but it will not be easy.

If you missed the last post about changing the way you can help, please refrain from contacting Jen. Instead, we'd like to direct you to our meal train site, where you can sign up for meals, or help financially.