The Autopsy

We met with Goose's primary doctor this afternoon to go over her autopsy.
That sentence alone makes me sick.
The fact that today is the 4 month anniversary of the last time that I looked into my baby's eyes intensifies the feeling.
Four months ago we thought our baby had beat it all again and was on the road to recovery.
Four months ago I never would have thought that within the next 24 hours my baby would be gone.
And that four months later we would be learning what killed her.
I knew that I needed this.
I knew that it was critical for all the questions swirling in my head to be answered.
I knew that not knowing would send me continually down the rabbit-hole.
And I know now what we need to focus on.
What we will spend the rest of our lives advocating for.
To bring her justice.
To make her death mean something.
Anything.


The good:
-Nothing we did could have stopped this. {I realize that doesn't sound like a good, but really it is.}
-"Catching" her leukemia sooner wouldn't have changed anything.
-Finding out she was bleeding any sooner would not have saved her.
-When she died she was still cancer-free. {Small victory, I suppose.}
-This happened fast. Very fast. Which we all knew, but to know for sure that her death was not long-suffered helps. Sort of.

The bad:
-It was not merely a single artery that was bleeding. Her body was clotting and bleeding everywhere. Many of her organs were losing blood supply and turning necrotic.
-She had acute endocarditis. Her heart valves were septic. We thought the sepsis was "under control", but it apparently was not. And therefore her heart was distributing bacteria throughout her body unbeknownst to us.

The takeaway. While necessary to treat her cancer- chemotherapy killed our daughter. There is nothing ok about that. We now understand that the risk of death by infection in an ALL patient is like 1%, but our Goose, she was one in a billion. I have a feeling that she may be the only kid to have ever and who will ever battle not only cancer, but a disseminated fungal infection, cdiff, sinusoidal obstructive syndrome (VOD), corynebacterium sepsis and a whole gamut of other infections in just five months.

Shared before, but this photo was taken one year ago tomorrow.
The 24th of February.

9 months, 4 months

Here we are.
Nine months post-diagnosis.
Four months [almost] since she was taken.
How can so much happen in such a short span of time?
How can so much change?
I look at Goose's treatment history, her photos, and I just cannot make sense of it.
Why her?
Why us?

We should still be counting down to the end of treatment.

Anxiously awaiting her last days of chemo. 

Taking her on a make-a-wish trip to celebrate all that she has persevered though.

Counting down the days until preschool. 

But here we are.

Four months out from the last moment I got to look my baby girl in the eyes and tell her how much I love her, how incredibly brave she is.

Four months out from the sequence of events that I still can't grasp.

Four months out from the moment that changed everything.

And so the counter runs, and it will until the day I can join my baby again.

17 weeks...

Nearly 4 months...

Too long.

And yet, not long enough to be relieved of this pain.

The last time my baby girl would play with all her siblings, ride her scooter, be at home.
The evening before her final admission.

Photos from the type of milestones that, in a right world, I should be reminiscing about.

After finding out that our puzzle-piece, very planned and perfectly executed #4 November baby was our sweet Goose.

4 months old

9 months old

Home

Using a hair clip I gently twist the lock, it just feels like something that needs to be done gently. As soon as I open the door I breathe it in. Goose. My baby. The scent just fills her abandoned room. I don't go there often, only when enough "things" have gathered and I know it is time to. Her things. Her animals. And dolls. And toys. Clothes. Blankets. Everything we have left of her physical life is here. Waiting. Who knows for how long. Months. Years. Forever? I'm not sure there will ever come a day when I feel it is ok to bother it. The thought of packing any of it gives me mini panic attacks. The kids will be ok to share rooms. After all, it's Lucy's room. Even to them. I worry the day may come though, when I open the door and I won't smell my baby. And I don't quite know what that day will mean. But for now I can say with near unwavering certainty here is where I am going to live out my days. Because here is Goose's home. Here is where I can go and smell my little girl's presence. So here I will stay.

Passed away

Something has been bothering me lately. Well really that's an understatement- might be better to write a post on what HASN'T been bothering me. In the past few weeks, on the rare occasion that it comes up with complete strangers, it has become second nature to say Goose passed away in October. Passed away. It's a perfectly nice term for old people. People who lived a long, full, life. They passed in their sleep, They passed peacefully. They passed surrounded by loved ones. Passed away seems natural. Goose didn't pass away. Her body pulled her under. I am almost certain that her soul and her mind were 100% not ready to leave this world. But her little body was just so broken. There was nothing that can make me think that anything that happened in that 12 hours was peaceful or calm. I cannot even begin to fathom the pain my baby girl was in. But what else can you say? Her body murdered her. But, honestly, I think that might be a bit brash. Random strangers don't want to know what really happened in that half of a day. In fact, I'm sure that most here don't even know. I'm not sure that anyone ever will that wasn't there. But, please, know this. My baby girl didn't pass away. She was stolen from this world, and I'm not sure there will ever be a time when I can accept that and be okay with it. Ever.

There is nothing I don't love about this photo.
Her signature rolled eyes and wry, little smile.
She was a fighter.
My little warrior princess.
My Goosey girl.

Potential new shirts

Andy and I have designed shirts for ourselves and the kids. We are having them printed through the same company that did the original "I wear orange for Lucy" shirts. They will be black and made on the American Apparel shirts, available from Youth to Adult sizes, same as before. I wanted to check to see if there would be enough interest for us to open this up as a Booster campaign to allow others to also purchase the shirt. It would be strictly as an ability for others to buy NOT a fundraiser for Goose at this point. However, to open it as a Booster page we would have to sell a minimum of 50 at the $20 point. Before I go through that process, I want to make sure we could make that minimum. Otherwise, we will just purchase the shirts on our own through CustomInk. Please take the survey below, and in about a week I will see where we stand! Thanks!! :)

Also, for any interested we have 6" window decals. INFO HERE

Here is the shirts. The fronts may change slightly, but still, same general idea.

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World Cancer Day

Seems an odd day. Maybe just to me. Maybe to others who have lost someone to the jerk that is cancer. To me, days are about celebrating.  I have nothing to celebrate when it comes to cancer. To those who have fought cancer and won, perhaps. I get it. It is a day of celebration, of triumph. If I'm honest, I'm jealous. I would never wish ill on anyone, but I can wonder why my baby girl didn't get to be so fortunate. Why she didn't get to come out on the other side of this horrible diagnosis. I can only hope that one day, some way, some how we can make her death mean something more. That her loss can bring life to those who find themselves forced into the same nasty war that she was. 

From her healthiest stay this summer,
during Childhood Cancer Awareness month.