It began as a simple way to update family and friends. Then, it was my link to all of the people praying for Leah. Today, I hope it’s also a connection for a family in need of knowing someone else in the world is in the same boat.
Proton radiation begins on November 16th. The goal is that the radiation will prevent progression, and the tumor will remain stable. Best case scenario it shrinks. The problems the tumor causes may lessen or go away, but no guarantees. So we will pray for the very best outcomes.
Leah will have 28-30 treatments, and we plan on being home before the new year. The radiation may cause swelling and worsen her symptoms for a while. She will lose her hair at the radiation site, which will be the lower bottom portion of hair on the back of her head. The hair will probably grow back, but if it doesn’t, the top layer will grow to cover the patch. The side effects may be headache, nausea and fatigue. The skin at the radiation site could also become very dry and irritated. There is a high risk for hearing loss in the left ear, so this will be monitored closely.
Leah will have treatment Monday through Friday. At the holidays the clinic will be closed, so we will have an additional treatment the Sunday before. We plan to travel home for Thanksgiving, Christmas and a family wedding (which we are SUPER excited for!!!)
Tomorrow we have some testing and a CT simulation. They will make a stabilization mask that Leah will wear during radiation. She will also need an IV for labs and contrast. Leah had the option to leave the IV in for Wednesday’s MRI, but she opted for a second poke. The CT is less constricting than the MRI and much shorter, but I’m not allowed to be in the room with her. I always keep my hand on her leg when she’s in the MRI, so this will be an adjustment for both of us. But I remind myself that she’s no longer the eight-year-old little girl she was when all this started. She’s growing up- and growing braver and stronger.
Thankfully, we found a place to stay. It’s about two miles from the hospital, but we have access to free transportation to and from. We think it will be a quiet, peaceful place to spend our days. There is a beautiful view from the rooftop patio and paths to walk along the water.
We also found a Whole Foods store near the hospital, which will be perfect for picking up produce and prepared foods for easy dinners. They also had some seriously good-looking desserts- just in case 😊