Autopsy Report

Eric and I decided from the get to that we would donate Atticus' tumor; when the time came. That it would be selfish of us not to. It's the only way the medical world can research these "un-touchable, un-operable" tumors. It would be selfish of us to not try and help the next generation of DIPG kids and families.

After Atticus passed away and we had our time with him, the funeral home came and got him and took him to Children's Hospital in Dallas, where he would have that horrible life-eating monster taken out. I have absolutely no words to properly describe how awful it was watching/helping get Atticus situated on the stretcher then watching him drive away. No words can even begin to touch it. All I know is that I fell to the ground and don't remember much.

We didn't get to see him/his body, again until Friday June 1st. The day of his viewing. Dressing my sweet boy was surreal and something I want to keep sacred. Something between me, Eric, our sweet Angel, and the Lord. I kind of flipped out, well not kind of, did flip out, and made my mom and mother-in-law leave the room. I wanted to be alone with my sons body. I have the biggest pit in my stomach right now... As I look at my sweet boy, overcome with emotion, trying to remember each and every detail of his little body, I noticed his port was taken out and the dressing from it and from his shunt surgery were removed. Something I was glad he didn't have to suffer through. Heaven knows that boy DID NOT like to have his dressings changed. I also noticed bruising from where the incisions were and my whole body filled with such intense "mamma-bear" emotions thinking, "those dang doctors better have been gentle with him. They better have removed those sticky adhesive nightmares with care. They better have remember there there is a mommy aching, part of her heart dying as you analyze and chart about her first born. You better have realized that this isn't just ANY child. It's Atticus."I completely broke down. Pushed those thoughts away, said a prayer and did what I needed to do.

SOOOO, we donated Atticus' tumor. Dr. Goldman left me a message the other day saying that the autopsy results were in. My heart raced. Listening to his message put me back into "Cancer" mode, where messages from the Oncology Doctors was a typical thing. It put me back to when Temedar Decodron  Bactrum and all those other medications and medical terms were part of our every day vocabulary. But I will admit, that as hard as it was listening to the message, it was so good to hear Dr. Goldman's voice. We love them. All of them. They are a part of our family and will forever be a part of our life story. Dr. Goldman came to the viewing and it meant a lot to us.

I spoke with Dr. Goldman yesterday, August 2nd, our 2 month mark from Atticus' funeral... I have not held, kissed, or lay eyes on Atticus' physical body in 60 days. 2 months may not seem like a lot to the average life but let me tell you, 60 days in our life, especially right now, seems like an eternity.

The results... Funny how I never really thought of the word "Autopsy" before but now the word seems so cold. So definite. So final. And  I think to myself, did I really put my son through something so cold.. definite and final? But then remember that he would have wanted this. We all did. We all wanted to help find a  cure for this cancer.

It was hard for me to read the Autopsy report. Not just because I couldn't pronounce half of the words but because it was MY child they were talking about, "The body is that of a male child appearing to be the stated age of 4 years... The skin is pale... fixed rigor mortis... The head hair is red-blonde... The eyes are blue-grey..."

I miss those blue eyes. They never seemed grey to me.

Atticus was diagnosed January 13, 2012 with Diffuse Intrinsic Pontine Glioma. After talking with Dr. Goldman and reading through the 28 page Autopsy report, we learned that he did not have a Glioma but a PNET, a MUCH more aggressive tumor. The Neurosurgeon said that Atticus was covered in tumors with multiple masses in his midbrain, pons, and medulla.

I totally and completely broke down. Called Eric and broke down again. My heart breaks for Atticus. I know he's not suffering now, but that doesn't help me now. He suffered and didn't show it. He suffered but kept a smile on his face. He suffered, being "covered" in tumors but kept going. I hate that I couldn't fix it. I hate that I couldn't save him. I hate that I have burned in the back of my mind those terrible awful moments. I hate that kids have to have cancer. I hate that Atticus didn't have a Glioma but a PNET. Did it really have to be worse? Really?

Stupid tumor. Stupid location. You know how Realtors always say, "Location. Location. Location!" Well AMEN to that. LOCATION. I just want to scream. Had the tumor had the tiniest bit of growth outside the pons we could have biopsied it. Or I don't know.. been in a totally different location!!! AHHHHHH! I just want to scream.

But then reality check. It wouldn't have change a thing. Whether a glioma or PNET the result is the same. As Dr. Goldman said, "Could treating the tumor as a PNET given Atticus a couple more weeks or months? Who knows? But I do know, that he would have suffered more and would have been in the hospital a lot more." Which is against what we wanted in the first place. Quality vs. Quantity.

Although the outcome of gliomas and PNETs is the same, there would have been a few differences.. with Glioma's you radiate JUST where the tumor is, not the entire brain and Temeodar is the chemotherapy of choice. With PNETs you radiate the ENTIRE brain AND spine and use a "much more aggressive" (Dr. Goldman's words) chemotherapy requiring more hospital visits.

Anyway,  here are a few "clips" from the Autopsy report.

"The most significant finding at autopsy was the presence of a primitive neuroectodermal tumor (PNET) in ALL regions of the brainstem as well as diffusely within the Leptomeninges surrounding the brainstem. Although the history suggested the tumor was initially centered in the pons, there was gross evidence of leptomeningeal involvement extending rostrally to the optic chiasm, to the medulla, and laterally to both cerebellar hemispheres. The tumor had uniform morphology, with malignant cells invading the brainstem parenchyma. Children with CNS PNETs show a worse overall survival rate compared to children with medulloblastoma."

 "There are extensive leptomeningeal adhesion's... (a bunch of other stuff)..., most prominent on the anterior surface of the pons. They extend to the medulla."

"Tumors on both right and left sides and in all THREE regions of the brainstem..."

"There is a infiltrative tumor involving the parenchyma of both brainstem sections..."

"There is prominent expansion of the subarachnoid and Virchow-Robin spaces by tumor..."

"Rare perivascular pseudorosettes are also identified..."

"In summary, this 4-year-old male child died of a brainstem primitive neuroectodermal tumor that had spread to the midbrain as well as diffusely within the leptomeninges.

So there you have it. It doesn't change anything but having the knowledge makes me feel different. A realization that Atticus suffered more than we know making him even MORE remarkable. He bore his burden with such courage and bravery. He is truly amazing.

WE LOVE YOU SWEET BRAVE BOY... xoxo