Second opinion and the Waiting game..

This past week, we have been home and enjoying our family time. I have felt surprisingly "high" and I go days without crying. I can tell everyone is praying for us. Overall, we have felt incredibly lifted.

We have spent a lot of time outside, since it has been absolutely beautiful. The only problem is, I treat my poor Vivi like she is made of glass.

I don't let her go down our slide anymore. She went down funny one time and it seemed like it sent pain through her body. No more slide, Vivi and forget about going to the park. You have a tumor.

Vivian has watched her older sister (by 13 months) do gymnastics. Until I found out she has a tumor, we would practice at home. We would do somersaults, stretch and do cartwheels. No more, Vivian. You have a tumor.

I typically have my kids eat pretty healthy. They actually eat veggies and fruits better then processed food (Don't get me wrong, we frequent chick-fil-a). But since Easter, Vivi has been requesting her "Easter candy" morning, noon and night. Whatever you want, Vivi.. you have a tumor.

My kid wasn't sick until someone told me my kid was sick. Now, when my baby cries.. I wonder if she has pain? tingling? Is she getting ready to puke? Is she scared? Or is she just throwing a fit because she is TWO?!


This week was a huge waiting game. I spent a lot of time on the phone trying to coordinate with Cincinnati Childrens. We reached out to multiple resources to see who the best to work on my kid is. And lucky for us, we had 2 physicians and 1 neurosurgery nurse practitioner all separately recommend the SAME guy, How much peach of mind is that?! One of my biggest worries throughout this process has been making the "wrong" decision and blaming myself when everything is said and done if something goes wrong. Because Jake and I put a lot of effort into finding "our guy".. I can't look back. I can't go to that dark place and blame myself. I did the research and I won't let myself take on the guilt. Well, I'll do my best!

We finally got into Cincinnati Childrens with "my guy". My primary care physician was a huge advocate for it. She was incredible throughout the process. She always is.

Today, we met with the neurosurgeon. His version of the surgery was very.. different. 1 neurosurgeon in the room (him) and a resident or fellow. He believes it will only take 6-8 hours. The previous surgeon almost double that time and was going to use 3 neurosurgeons. The hospital time is less. Risks are the same. Since my daughter is so young, and has a very extensive tumor that will require a laminectomy involving 14 vertebrae, she has a very high risk of deformity. Her spine may not be able to support her. The previous neurosurgeon was going to monitor her closely and possibly put her in a back brace if she starts slouching. This neurosurgeon is automatically putting her in a back brace for 3-6 months. If she slouches with the brace, she may require a fusion of her spine. He wants to avoid that because, obviously.. extra back surgery stinks. But also because she will always need to be monitored for recurrence of a tumor and the hardware they would have to place for the fusion would make her MRI difficult to read.

It also sounds like her hospital stay will be less and she can go to inpatient rehab at Cincy Childrens. I love that!!!

Overall, the surgery sounds better. I hate the idea of my kid being on the table alllllllllll day. 8 hours sounds like nothing compared to 13-17 hours. However, this surgeon basically said her surgery is about as complicated as it gets. Ugh. And it's very likely my baby will need chemo. Double Ugh. The only tumor that won't require chemo is a glioma stage 1. Whatever tumor causes the least difficulties with my baby long term, is the one I want. If she requires chemo, but that helps keep it away.. so be it. She wouldn't start until a couple weeks after. The chemo would break down her scar tissue which would make her back difficult to heal. So, we would wait. And maybe I misunderstood the previous neurosurgeon? But we won't know for a week if her tumor is malignant or benign. Ahhh.. I thought I would know the day of surgery. More waiting. Hopefully we can do surgery May 11. She has to be off ibuprofen for 2 weeks and on steroids.

Tomorrow, we go BACK to Cincy Childrens. I guess I need to get used to it. We will get her bladder checked. She is not potty trained and because the tumor is so low, we are unsure if her bladder functions properly. Not that the surgery will fix that if it doesn't function right.. but.. at least we will know prior. Really, I think it's to cover the surgeon's ass.. if she doesn't properly function, he wants to know before surgery so he can't say "I caused that". It's a long day for my girl though. It's not a fun day of testing, that's for sure.

I have been very strong this week. Today was a low for me. It's hard to talk about my daughter being anything but perfectly healthy. It's hard to hear the word "complicated". It's hard to envision my perfectly perfect girl in a back brace. It's hard to think about a bladder not functioning. It was hard to see her get MORE blood work. I hate it all. I just want to look at my kid and see my kid.. and not her stupid effing tumor glaring at me. I've been good, until today. Tomorrow will be better. Okay, maybe not tomorrow since she has a long day of testing.. Saturday will be better. :-)

We appreciate everyone lifting us up SO much. We feel it. My girls feel it. Vivian asked me tonight if I was sad "And I said NO, I am SO happy. Are you sad?" Vivi said "No! I happy! I laughing! Brynny happy, too. Aubrey happy, too. Daddy happy, too!". We are happy. All my people. We've got this!!!