365 day nightmare

I woke up to sounds of Natalie making fart noises on the baby monitor, as I often do. When she giggles afterward its just pure joy. Sorry Folgers, this is the best part of waking up.

I started the "normal" morning routine. Get dressed, pick out Natalie's clothes, grab a clean diaper and wipes, change her diaper and then move on to breakfast.

During the diaper change I noticed a large (I mean LARGE) lump in her lower abdomen off to the right side a bit. That DEFINITELY wasn't there last night. So I start my frantic checklist and try to talk myself off the ledge a little. "Cant be constipation because she's 'regular'". "Could she have eaten something and it gotten lodged?" "What could she swallow that's that big though..."

All this panic was amplified by the news I got the day before. You see, another AS (Angelman Syndrome) child in a neighboring state had drown in the bayou near their house after getting out of the home during the night. I was really devastated. I couldn't help but think "if that had been my child" and how I would feel. How broken that mother must be feeling...

I remember thinking that it was the worst way to lose a child. So sudden. She must have been so afraid... I thought, if I had to lose a child Id want to know. Id want to be able to say goodbye. ld want to enjoy the last days the best I could.

I have no idea why the thought even came to my mind. I immediately put it behind me and went about my day...
Naturally, when seeing the large lump out of no where the very next morning, my first thought was cancer.

I didn't want to even say it out loud. I didn't want to think about it too much even because maybe if I ignored the possibility then that wont be what it is.

I had so much guilt.
I had said I'd want to know
I would want to be able to say goodbye
I wanted to spend the last few days together....

I had brought this on myself. Why would a mother even think such a thing?! It must be my fault. Had I unintentionally wished this on my sweet girl?

It was still really early so the Dr. office wasn't open yet. Our pastors wife is a nurse and good friend so I sent her a picture of Natalie's lump to see if she had any ideas while I waited for 8am.

She asked a few of the Dr's and other nurses and concluded I should "definitely take her to the Dr.". By the time I got that text I had already packed the diaper bag & was putting my shoes on. I called the Dr. Office at 8am while sitting in their parking lot. No one seemed obviously  concerned & it did put me at ease some. Although I suspect it was just a brave face being put on for our benefit. 

I cant mention cancer.
Do not ask.
Do not think about it.
Its definitely not cancer.
Your just paranoid.
This is your fault.

We were sent to the Gastrointestinal Surgeon in town. He did an xray.


We would have to come back the next morning for a CT scan.

& the nightmare begins.

I cant believe it has been a year since this day...

We didn't get the actual diagnosis of cancer until several days later during a biopsy, but her Pediatrician called the night after the CT and told us what she had found out.
It was probably a tumor.


As most of you know,
She was right.


Scans: An update on how treatment is going

When we found out Natalie had cancer back in August 2015, it had spread throughout her abdomen so much that one of the Drs at St Jude commented that he was amazed she was able to walk comfortably. I think back to those days often because it reminds me how far she's come. Progress for Natalie never shocks me. Shes always been a "defy the odds" kind of girl. She's always been brave because she's always had to be.

Thursday last week she had both a CT scan and an MRI done to check the progress of her cancer treatment. All of the main masses that they could find during surgery were removed in February and so having had chemotherapy even after that we were hoping she would get NED (no evidence of disease) status today when I sat down with the Drs to review the findings.

Sadly, that was not the case.

Natalie still had what looks like a tiny little spot that's "lighting up" in her lower left side. Its very small and there's a chance its not even cancer but a cluster of tissue or any number of other things. But, since we cant just go in and see, we have to assume its cancer.

Her doctors were extremely excited. But, I just felt sick. I still feel sick. Mike couldn't be there because hes back home working so, it was just me.
Trying to be brave for Natalie.
Her doctor pulled up a side by side for me because he didn't think I was excited enough. Seeing the difference in her scans now vs her scans when we started definitely made me feel better. But, the cancer is still there.

Here is a photo of the side by side CT scans.

The left is the recent one. The small little greyish green x is the tiny little cancer spot. The right huge X is just ONE of the many tumors that had taken over her abdomen.
To someone like myself who cannot "read" imaging very well, the one on the right LOOKS clearer but, that's just because the tumors were blocking all the organs and bowels (etc.) from view. Some were even sort or squished to the sides because the tumors had claimed the space as their own.
The difference is astonishing...
For over 10 months its felt like Natalie has been under attack. As a parent that's extremely hard to just accept and live with while waiting for something to change...

Her body is still under attack.

So we continue to fight.

We continue to pray.

We just continue on because.... what else can we do?