Survivor Side Effects (Day 152)

This weekend and today we had another shunt failure scare. 

This means Lily had some potential symptoms that would indicate the shunt in her brain was failing. 

These symptoms could be nothing--gagging and vomiting could be because of the rotting smoothie on her bedside table or indicate her shunt is blocked and cerebrospinal fluid is filling her brain. Having difficulty walking on steep and unsteady beaches could simply be that it is difficult to walk on a sandy beach sometimes or it could mean Lily is on the brink of shunt failure and emergency surgery is needed. Wanting to wear her eyeglasses could be just the result of needing eyeglasses and finally finding her missing pair or it could mean hydrocephalus is affecting her vision. 

Mike called the neurosurgeon on-call and we feel pretty secure that Lily is okay. No need for the emergency room, this time. 

Who would have thought that a neurosurgeon would always be the most comforting person in my life? 

This is our life and it will be, God-willing, as long as I live and as long as Lily lives, which I pray with every breath is until she is at least 100 years old. 

We have no choice in the matter. We are a family of a brain tumor survivor and in turn, we are our own type of survivors. 

For Mike and I, this means carrying the deep fears and trying our best to discern fear-based concerned from fact-based concerns. There is no "trust your gut." for us. There is either bone chilling fear or cold hard facts. Our guts have been ravaged for 14 years. 

For Lily, this means as she nears adulthood that she has to learn vigilance that does not get in the way of her living her life. She's good at this, mostly, but she is also a child who holds her deepest sorrows and concerns close. Lily went to school today knowing we were worried and knowing that she could come home from school and immediately be on her to CHOP for a CT Scan. She went knowing that the CT Scan could lead to a PICU stay and brain surgery and all the recovery that comes with it. 

She still went to school. She let regular life win, today, as it should. 

Mike and I went to work (in our home offices). Mike talked to the neurosurgeon, we knew we were okay for today.  We both put out the Tuesday after a long weekend fires and participated in meetings and prepared documents and replied to emails. For me, the sheer terror of what could have been gave me the perspective and adrenaline to push forward and cross out to-dos. I have to try to let regular life win, as it should.

For our younger two children, the uncertainty of what was happening was not lost on them. We don't shield them from much--it is impossible and we've always approached Lily's diagnosis as a family affair. For Chloe, today was filled with angry, hateful, anxiety ridden outbursts that were hard to take. But, I know that those outbursts laced with rage are fueled by her deep love for her sister. 

For Nicholas, today was filled with questions--endless, endless questions. "What's the difference between an MRI and a CT scan? If Lily needs an MRI can I come? I don't want to be left at home worried and I want to see what they are doing." His exhausting questions, well that's him trying to make sense of it all--usually his love of science to decode the senselessness of his sister's cancer diagnosis. 

So tonight, I am exhausted. I don't give a flying fuck about anyone's regular life. I have this intense survival tunnel vision--check off the to-do list, make a list for tomorrow, pray for my daughter, find the grace that seems to be impossible to find for my younger children and remember to try to let our regular life win.