Round 2

So, tomorrow this roller coaster takes another turn. Nora starts round 2 of her chemotherapy treatments.
We are scheduled to check into the clinic at 11:00am. She will have some blood work done (all from her port), and hopefully, her numbers will be stable enough to start round 2.

With big sister, Heidi

This round is a little different than round 1. And by a little different, I mean completely different in every way. Round one was 3 days of treatment- 4 bags total, 2 drugs. This time it will be 3 new drugs. One day. All 3 bags back-to-back-to-back. One of them is quite powerful, so she will need to be monitored for at least 24 hours after it has been given. It is unlikely, but it can attack the wall of her bladder, which would cause bleeding that would be noticeable in her urine. For that reason, we get to attempt collecting her urine once again.

You may wonder how one "collects" a baby's urine. (I would have wondered that myself 3 weeks ago). Trying not to give out TMI, it involves a ziploc bag with a large sticker around the top of the bag. In Nora's case a few weeks ago, it involved SEVERAL bags, a colossal mess, the deafening threat of a catheter insertion, many prayers, and a merciful & genius nurse who brought some gauze and cotton balls during the eleventh hour. Catheter averted and my girl's pee-soaked gauze was sent to the lab JUST in time. Phew! There are a lot of good people who have come into our lives at Children's Hospital that have made this experience just a little more bearable. That nurse was one of those people.

To be honest, we have been so blessed with how little her first round of treatments have affected her day-to-day life. She is still her happy self and aside from her port and occasional nose bleed, she is a completely normal, healthy 5 month old to the naked eye. And did I mention beautiful?

I'm not going to pretend I am not scared out of my mind. I will barely sleep tonight and my mind will be racing all morning, but I will be right next to her tomorrow- holding onto her precious finger and kissing those cheeks as many times as she will let me. I continue to be reminded each day of how precious and fleeting life is. I am reminded not to sweat the small stuff, because in the end, it really is ALL small stuff.

Please say an extra prayer tonight for my sweet Nora. This the kind of fight we can't face alone.

Dad's Birthday!

Today is Adam's birthday. While there is so much to say about Nora and about all of the recent changes in our lives, I do have to stop for a minute today and say how truly blessed our family is to be headed by Adam. There is no one in this world that could calm the storm inside me like Adam. He might not always have the right words, but he is constant. He rarely falters, and when he breaks, he reminds me that it is OK to be human. It is OK to be scared and sad and discouraged. But, where I tend to get lost in that state, he finds his way above the waters so quickly. I am so grateful for that. I hope our girls take after him in many ways, but especially in that way.

Happy 35th Birthday, to the man who has the ability to drive me drive me crazy and keep me sane at the same time. I am so grateful God brought us together. Our girls are so very blessed to call you dad.

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

Our new life.

I thought I would start a blog about my baby girl's cancer battle. I have so many friends and family that live far away and I am not able to connect with everyone personally, so I thought this might be a good way to keep everyone updated on what is going on in our new world. Since I was little, I have always loved writing. It is the best way I communicate. I find it calming to get my thoughts down on paper, so hopefully this will serve 2 purposes- keep the people we love connected and help to keep me sane! I will try to add to it as things happen and as Nora's journey continues...

Nora was only diagnosed about 2.5 weeks ago, so this is all very new to us. We learn more about her disease everyday, but her plan moving forward is in motion. Her doctor's at CHP have been nothing short of amazing and have made her case a priority in every way they can. (She started her first chemo treatment just 4 days after being admitted to the hospital). It is still shocking to write that.

Morning after her first 2 treatments

Neuroblastoma is not a very common type of pediatric cancer, but her doctors have experience in treating it and have been very hopeful about her prognosis. So far, you wouldn't even know our little girl has had 4 bags of chemo, 2 blood transfusions, numerous blood products, a CT and MIBG scan, 2 bone marrow biopsies, a biopsy of her tumor, and a broviac port implanted into her chest (all in a 10 day stay at CHP). She has also had a hearing test, 2 echocardiograms (chemo can weaken hearing and heart functionality), and had several IV's started.

We are extremely hopeful for a full recovery and we appreciate all the prayers from loved ones and strangers alike who care about our baby girl and want to see her live through this as much as we do. She is our brave little warrior, and as much as it breaks my heart everyday to watch her fight this battle, I know she can do it. She is my inspiration and she is going to change the world. I just know it.