"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! ;-)