Alright! Willa experienced the first of what looks like will be many many many EUAs (Exams Under Anesthesia). She was the most perfect baby to not have eaten for 6 hours and still not cry before being sedated. She just fell asleep in my arms and barely noticed when they put the gas mask on her. Steven and I decided that I would walk her into the OR, so I suited up, and laid her down on the little table (that they made extra cushy and warm)….then they let me give her a little kiss on the cheek and I walked back out. I cried.
Waiting in the waiting room was almost torment. But it was neat to see other kiddos there with prosthetic eyes, you can hardly tell! I read a beautiful letter from a beautiful friend and prayers from The Valley of Vision to help pass the time. Steven read some AMAZING paragraphs in Cries of the Heart. Here’s an excerpt:
It is a continual effort not to listen to the moods which arise from physical condition, never to submit to them for a second. We have to take ourselves by the scruff of the neck and shake ourselves, and we will find that we can do what we said we could not.
Unless we train our emotions they will lead us around by the nose, and we will be captives to every passing impulse or reaction. But once faith is trained to control the emotions and knows how to lean resolutely against weaknesses of character, another entryway of doubt is sealed shut forever. Much of our distress as christians comes not because of sin, but because we are ignorant of the laws of our own nature.
Dr. Wilson called us back after about a 45 minute wait. By the way…Dr. Wilson has the coolest glasses. He’s pretty hip. First word out of his mouth today was “unfortunately” and I almost barfed, but then he told us what we pretty much already knew: “Unfortunately, Willa does have Retinoblastoma.”
He showed us a snazzy scientific photograph of her eyes. Her left eye is perfect, PRAISE GOD! He didn’t find any tumors or growths there. He did say, however, that the tumor in her right eye is one of the biggest, if not the biggest Retinoblastoma tumor he has ever seen in a patient her age. And this guy is the leading Retinoblastoma specialist in the world, so I think Willa needs a prize or a huge scholarship or something, right?? Talk of chemo lasted about 10 seconds and then we quickly moved onto eye enucleation (I sound so smart when I say it like that). So….Friday she will have her right eye removed. And at this point, no chemo. Hopefully it will stay that way.
We were very discouraged after her exam. Dr. Wilson couldn’t say whether she had Unilateral Sporadic Retinoblastoma or Bilateral Hereditary Retinoblastoma, and it sounds like it’s more gray area than we at first thought. You see, all of Willa’s symptoms point to Unilateral, however, since she is so young, it’s possible that she has Bilateral and tumors just haven’t had the chance to develop in her left eye yet. So, it looks like more waiting is probably in the cards for us. After they remove her eye on Friday they will study the tumor and should have some more information, but even then, it’s more of a waiting game. We will return back here to St. Jude every SIX WEEKS for EUAs to make sure there are no more growths. If growths are found, it would confirm that she has Bilateral Hereditary Retinoblastoma, BUT, the good news is that tumors would be found when they’re minuscule and removed with laser treatments.
Phew…that’s a lot, and it’s still not all of it, and I’m just as lost as you are reading all of that.
Main points are: no tumors in left eye, right eye being removed, MRI tomorrow to check to make sure there are no tumors in her brain, EUA every six weeks, Finn and Johnnie will be examined, and St. Jude is a part of our lives for the next 18 years.
Willa was a wreck when we were taken back to see her. Wires everywhere. Screaming. Nurses trying everything. Toots and burps from all the gas. She was feisty! And it took a lot to calm her down enough to eat anything. Our hearts at that point just burst and splattered all over that post-op floor. I hate cancer. Every time I lock eyes with one of the patients here I just want to grab them and suck the cancer out of every corner of their bodies with my cancer-sucking vacuum.
Willa’s MRI is scheduled for tomorrow morning at 8:00…another huge day and hopefully more peace about what exactly is going on with her. Then, surgery Friday.
Another hurdle down….a handful more to go.