Two years ago Diva was diagnosised with a very very rare tumor disease called lipoblastomatsis. Needing a biopsy to confirm, they did surgery that February, two weeks before I had SB and three weeks AFTER Hubs deployed. However, once the surgeon was in-things changed. The tumor was more invasive than they thought. It had grown into her back muscles, into her skin layers and down her spine. At the time, the surgeon did what she thought was best which was take what she could and leave what she couldn’t. There is no real studies or research done on her disease. But ultimately, what they did then wasn’t enough.
A month ago we sought out a second opinion. Hoping, for the new surgeon to simply agree with the previous course of treatment; we were not prepared to be sent to a pediatric oncologist. This past Friday we had that meeting. It didn’t go well. So here I am at the hospital again, but this time in the pediatric surgery waiting room.
I brought my journaling bible, my phone to read my Bible study and to play on, my diy planner I’m working on, stamps and ink for them, gel pens to doodle with, moleskine to take my notes in, boon to read and a snack. But I’m not hungry and to tired to concentrate on anything. The longer I sit the more worried I am getting. The coffee I chugged down is swirling around and around making me feel sick to my stomach. I’m trying not to listen to all the conversations around me in the children’s surgery waiting room, but they are the only things keeping me awake and lucid enough from running screaming and crying down the hall.
It’s only a mri. But it will hopefully tell us a lot. But that makes me worried. Her last MRI two years ago didn’t reveal half of what was really going on. It is my worry this time that it will be the same. I’m concerned it won’t tell us the whole story. Or if the MRI is good, it won’t be honest.
The tentitive treatment plan the pediatric oncologist talked about mention terms like chemotherapy, removal of all back muscles and reconstructive plastic muscle surgery.
If there ever was a time to get on my knees it is now. Having one child with a rare disease is trying enough on my heart, but now TWO with rare diseases is making my heart shatter.