Today and Yesterday have been incredibly long and exhausting days. We arrived here at St. Jude yesterday evening and spent a handful of hours in kind of a “triage” for after hours. Willa was checked out, got her vitals taken and seen by a doctor. We watched The Bachelor intermittently to help pass the time, but it was mostly waiting.
We got to our housing later that night and as soon as I walked into our room I was overcome with a strong desire to not be here anymore and to be home again. I think that I’ve viewed cancer as a death sentence my whole life and never really gave it much more thought. So, being here for only a few hours and seeing so many little bald headed beauties bopping around was too much for me. I wanted out. I didn’t sign up for this. I’m not strong enough and it’s time to go home.
But….two slices of Domino’s pizza, a few hours sleep, and a schedule for the following day that was like the golden ticket to Willa’s freedom from this tumor began to change all of that previous thinking. As I’m drifting away from denial I’m grabbing ahold of the reality of childhood cancer and the choice to play the victim or to do everything I can to help Willa fight.
This morning we were up at 6:30 and prepping for the day. We had appointments stacked one on top of the other.
All most of it was pretty low-key. A lot of waiting. Willa is the most perfect baby….she has barely cried or complained the least bit about being wayyyyy off schedule. Though she doesn’t so much like having three nurses hold her down to draw blood(mommy and daddy didn’t like that either). She smiles at us and falls asleep in our arms. She is the sweetest little trooper.
Tomorrow is a big day, a HUGE day. Tomorrow we head to pre-op for Willa’s EUA (exam under anesthesia). They will sedate her and Dr. Wilson will thoroughly exam both of her eyes. He is looking for various things during this exam. He should be able to tell us: 1. if she does in fact have Retinoblastoma. 2: if the tumor is contained in her right eye and hasn’t spread into the brain. 3. if there are any tumors in her left eye.
With this exam, along with genetic testing, we will finally know whether Willa has Unilateral Sporadic Retinoblastoma(which is what we are praying for, other than a miraculous misdiagnosis altogether) or Hereditary Retinoblastoma.
If Willa is diagnosed with Unilateral Sporadic Retinoblastoma she will probably lose her right eye, but that would be the end of this road. Other than having an incredible prosthetic eye, her life would be completely normal after removal….with the exception of how abnormally amazing this experience has already been so far and the legacy she is already living! There’s a 60% chance that her Retinoblastoma is Unilateral Sporadic.
If Willa is diagnosed with Hereditary Retinoblastoma, she will likely lose her right eye and she will be on strict observation for other cancers in the future, especially tumors in her brain, Leukemia and bone cancers. There’s also a chance with Hereditary Retinoblastoma for there to be future tumor(s) in her left eye. There’s a 40% chance that her Retinoblastoma is Hereditary.
After her exam under anesthesia, Dr. Wilson will tell us about his findings and then she has to be observed for 6 hours, so we will be confined to a little hospital-type room for a majority of the day after post-op.
Then Thursday, she is scheduled for an MRI which she will also be sedated for. Obviously we are hoping that there aren’t any other masses or growths found.
The next two days are big….they are what we are anxiously awaiting, yet dreading. There’s a fork in the road just up ahead. Each road is extremely different from the other and we have no idea which one we will be traveling.
Pray for the miraculous because God does not lack the strength. Pray for full hearts and courage because the Spirit that raised Christ from the dead now dwells within us. Pray that we would trust Him in the waiting because He has continuously proved His steadfast love to us.
Also, our address here is:
St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105-3678