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!!!

"It's a tumor"

1 week ago today, my entire world was rocked. 

My sweet Vivian has been acting off since the beginning of March. In the middle of the night should would scream blood curdling screams, but when you would run in to see what was wrong.. she would just sweetly ask for more milk. She had been sleeping through the night for.. forever.. so it was a change.. but not a red flag at the time. She began screaming when we would lay her down to change her diaper. She would tense up like it hurt.. but there was nothing I could see and she would be just fine after I was done. I mentioned it to her doctor. We decided it was just about time to start potty training and it was likely more of a behavior thing. At the beginning of April, she began itching at her chest. I never saw a rash, but she had even opened up her chest scratching at it. It happened to be at the same time I changed laundry detergents so we put hydrocortisone cream and gave her a little benadryl and went on our way. 

But the red flag that we finally listened to was on Sunday, April 9th. It was GORGEOUS that day and we were outside playing. Vivian was walking away from me and I called her name.. she turned around with her entire body, obviously unable to turn her neck. Immediately, I was concerned. But.. my kid was playing outside, perfectly happy.. so I went off to work that night, mentioned it to my coworkers and decided that morning I would take her to the doctor. 

None of the symptoms added up, but her rapid strep came back positive. We were puzzled but began treating her for it. Vivian began getting very lethargic that week. There were entire days that she didn't get off the couch. Antibiotics weren't helping, and my poor girl was hurting pretty bad. So we ran a full workup on her.. chest xray, neck xray, blood work, etc. All essentially negative. No reason for my girl to be hurting, unable to turn her head and not wanting to move. She also complained all week that her chest her. Never said her neck hurt, even though she looked like she was in pain when she turned, she only said her chest hurt. This was all happening while Jake and I were moving into a new house that we had worked extremely hard for. The highest of highs.. followed by the lowest of lows.. 

After a week of no answers, my daughters PCP ordered a MRI. This is a slightly difficult procedure with a 2 year old because they have to be under general anesthesia. I guess this is where I should mention that Vivian HATES doctors. She always has. If she walks into an appointment for her sister, she screams the whole time. I'm not sure why, but she just hates it. So this is THE worst kid to have sick because it's so hard for the doctors to assess her. I end up taking videos of her prior to going to at least they can see what she says. 

Anyways.. Tuesday April 18th.. I get chills thinking about that day. My baby went in for her MRI. She actually had gotten better the day and a half before. She was playing, laughing and acting better. We actually would've cancelled the MRI had our PCP not advocated for us so hard with Children's to get us in right away. Thank god we didn't. 

They had explained to Jake and I the timeline of the MRI and when we would get our sweet girl back in our arms a few different times. They never mentioned a doctor coming in and admitting us to the hospital. I knew it was not a good sign. Her spine had "lit up" as they described it all the way down. Why? They were unsure. Infection is what it sounded like. IV steroids.. IV antibiotics.. my baby would go home. 

We were admitted to internal medicine. Infectious disease, neurology, neurosurgery and oncology were all consulted. Good. Lots of eyes looking at my girl. 

Besides the admitting doctor, the first doctor to come see us was neurosurgery, I mean, she nurse hadn't even admitted us yet. It had been a whirlwind couple of hours. 

Dr. Kamian, who was wonderful, came in and did an assessment of my girl. Then brought up the MRI to show us. "This is not an infection.. this is a tumor.. a tumor that has been growing for a very long time." 

Blackout. 

I remember looking at him.. his mouth moving.. words coming out.. but I had no idea what he was saying. I had to tell myself to focus on his words. Focus. 

A tumor? Are you looking at the right kid? My kid is perfect. She is the sweetest, nicest, most capable and coordinated of my girls.. wrong! You're wrong, sir. 

But as more doctors came in.. the reality set it. 

My god, I had just told Jake that morning while we were watching parents struggle with the sick kids waiting for our perfectly perfect two year old to come out of her MRI.. "We are so blessed Jake. I don't think I could handle all of that."

I've always said that. I can't handle it. I wouldn't be able to. Yet, here I am.. handling..ish. 

The next day, the neurosurgeon explain the procedure to us. The last time he had a tumor this extensive".. he started surgery at 9am.. and wasn't done until 2am. Holy. Shit. BUT.. that kid walked 2 weeks later!!!!!!!!!

I can't explain the procedure.. because.. it's awful. But kids are resilient. My girl is strong. 

There are tons of risk. Her tumor is in the middle of her spinal cord from C2 to T11. Pretty significant. As of now, he says he thinks it's benign. We will know more of they open her up for surgery. From what I understand, they can take frozen sections of the tumor during surgery and know if it's malignant right then! So, surgery day I will have a lot of anxiety, but at least then I will know! 

We are praying the tumor is an ependymoma. That sounds like the least scary tumor. It is mostly encapsulated and doesn't intertwine with the spinal cord as much as others. So, I guess if you have to pray for a tumor.. you pray for that one!? Feels so damn weird. My girl has started complaining of her arms hurting this week. And has thrown up a couple times now. All the damn tumor's doing. I guess she was itching her chest so much because it's tingling.. not necessarily itching, 

So now.. we get to work. I'm waiting on a second opinion from Cincinnati Children's. This time I'm ready with my questions. 

I have a million concerns. First and foremost, I want my girl to heal and live a perfectly normal life. I want her to be in college, probably becoming a doctor.. and explaining what happened to her when she was 2.. and everyone be awestruck, No way.. this beautiful, capable brunette couldn't have had a tumor when she was 2?! Yeah, I want it to be something no one could ever tell happened. I want it to be my hurtle, and nothing she remembers. 

I want my 3 year old and 6 month old to not wonder where their mom is.. and where their sister is. I want them to be completely unaffected. 

I want my husband to know that even though this hurtle is going to keep us from sleeping in the same bed for a couple months.. that he is the only person I could ever imagine going through this traumatic event with. He is the best teammate ever! 

We have the best support system ever. We are incredibly blessed to be in such an awful situation with the best people by our side. Storm the heavens for us. We need all the prayers we can get. I am going to use this blog to document our SUCCESS story.. and because I know I'm going to need some type of therapy. Hopefully just writing helps! ;-)