her diagnosis

I still can't believe it. It has been just over 2 weeks. Feels more like 2 months. My legs don't feel like my own some days. It is hard to put one foot in front of the other, not knowing what the day will bring.
Don't get me wrong. I'm pretty familiar with cancer. It has been in my life for a couple of decades now, wreaking havoc on my family and friends-doing what is does best-destroying lives. Never liking to be caught off guard, I have been preparing myself for years to hear my own diagnosis one day, but I wasn't prepared for February 23rd. My 4 month old was perfect in every way. Yeah, I know every parent says that, but so did her doctor-just a week before the worst day of our lives. How does something like this happen to someone so young and helpless?

One week before life changed forever.

Let's be real-she hasn't even seen sunlight yet. She hasn't been around smoke or even chemicals in hair dye. The craziest part for me was how not sick she seemed. Her normal pleasant self-just slightly cranky at night, due to teething, I assumed. (She cut her first tooth during her sonogram on the 23rd).
It was her belly. A few days after her well visit, it seemed big, even bloated. I figured it was gas. It didn't seem to bother her, but then it never went away either. I let it go over the weekend and took her in Monday (February 22nd) to her doctor (who I would recommend to ANYONE.). It was suggested that she have a sonogram just to be sure. So the next day (February 23rd), her doctor called and told us to take her to Children's for an outpatient sonogram at 3:00. We didn't leave Children's until 8pm on March 3rd.
Hell. It was hell. Hearing those awful words. I don't remember all of it clearly, because a lot of it was time spent with my head between my legs or puking into the toilet in our room. What I do remember thinking...

 "How did I not know? What kind of mother doesn't know there is a tumor growing inside her baby?"

It was explained to me that no one could have known. Even the "signs" many people see-bruising, pain, bleeding, inability to eat or poop-she had none. She just had that belly. The tumor itself is 5cm round, but even on her worst day, the doctor's could not feel it. What was making her stomach so hard and bloated was her liver, which was about 1.5 times the size it should be, and also filled with cancer. I still can't believe I am typing that.
While there is no way to determine for sure, it is thought that most babies who have this type of tumor are born with it. It likely grew in utero even, just growing along with Nora after she was born. In some rare cases,  these tumors just go away on their own. Sadly, Nora's was not one of those rare cases. I will write another post eventually about her risk factor, and how we came to know that she is considered intermediate risk. There were a lot of tests done to determine her factor and a lot of sleepless nights waiting for those results. There is a MAJOR difference in intermediate risk and high risk. I cannot even describe the relief in hearing she was not considered high risk.

I had countless questions circulating my brain in our 10 day stay, many repeated over and over-eating away at my soul. Way too many to write about in one post, so I will try to write about some of them in the near future. Questions about Nora's future, my faith in God, my ability to be strong for her in this fight, the strength of my marriage, my dad's health...it's amazing what tragic news and no sleep will make you worry about. I now fully understand the use of sleep deprivation as a torture tactic for terrorist prisoners.

No big deal-just an IV in each arm...but still smiling!

So, this is our new normal.
Chemo treatments every 3 weeks. Blood transfusions. In-home nursing on Mondays and Thursdays. Adam gives the sub Q injections of Neupogen into her legs each night and I flush out her broviac port with saline and lock it with a flush of heparin every other day (impressed by the medical training I received through my baptism into the "kid with cancer" world?) I remain astonished with what parents are trusted with when they take their children home from the hospital. I have an art degree. Adam is a pipe fitter. Neither of us even knows CPR. But here we stand, at the changing table each night, measuring out medicine into a syringe that will help our baby girl's bone marrow rejuvenate itself.

I pray to God each night that we are doing everything right. That our baby girl will celebrate her first birthday without a port in her chest. That Heidi will not feel left out by our countless hospital stays. That our families will stay strong and united. That cancer will one day be a thing of our past. That our new normal is only temporary and our girls will both be strong and healthy and live long and full lives. This I pray every night.

Nora holding onto her IV cord in the hospital