Diagnosis Day

TheTruth365 movement shared a diagnosis story today and asked for parents to share their story, if they could. These moments are devastating, fearful, distorted, crystal clear. This is Madeleine's.

"It looks like a germ cell tumor- it's common, successful treatment." 

"I think we should call the website 'Hope for Madeleine', what do you think?" 
"I'm not sure; they're saying it looks like a germ cell tumor, something we can fight with success. 'Hope' to me means it's terminal, and I think her chances are better than that."

For just over 2 weeks we had been sitting in the hospital, waiting. We had already been through the most dreadful two weeks imaginable  the devastation of learning Madeleine had a tumor in the center of her brain; one brain surgery to put in the shunt to relieve her hydrocephalus; a second brain surgery to biopsy the tumor because it was far too dangerous to remove it with its intertwining with healthy tissues. We weren't sleeping, we were sick with worry and stress, yet the days passed lazily without information. Why is it taking so long....

Friday, January 6, 2012

Yesterday Jessie Rees died. Tears dropped off my face like raindrops so steadily as I tried to read the newspaper article. She battled the worst kind of brain tumor- DIPG - and now she is gone. I am in such fear, I broke into hives the day she was admitted and they steadily got worse over the days. Is that what Madeleine has!?? Is this why they haven't given us the diagnosis yet? All they keep saying is that her tumor is extremely rare- they need another test- another day goes by- but nothing about what she has or what we're going to do about it.

It's late afternoon, around 4 or 5 p.m. Madeleine is taking a late afternoon nap. We've been waiting around today, Dr Davidson said we would be discharged today, and it's already getting late. The anxiety is eating us both alive. She came in, a few papers in her hands. She sat next to me on the couch and grasped my hand. 

The pathology has come back, finally. 
It's not what we had hoped for. 
It's extremely malignant. In babies it's almost always fatal. 

Her blue eyes looked into mine, looked down, looked back up again and she squeezed my hand. I closed my eyes and felt my body begin to collapse like the World Trade Center. Jeff looked up to the ceiling and was rocking back and forth, pleading silently to himself, DEAR GOD, WHY!!!!!!! WHY WOULD YOU DO THIS TO MY BABY!!!  TAKE ME!! JUST DON'T LET THIS BE FOR MY BABY!!

I reached for him and we held each other tightly, exploding anguish and fear in our tears. I have no idea how much time has passed before the wails have subsided and my face feels like it's going to burst. This cannot be real, this cannot be real, this cannot be real.... But somehow, this is real, she is telling us Madeleine has CANCER in her BRAIN and it is most likely going to KILL her.

But we can fight this!, she says

I have been on the phone with every leading expert who has treated a child with ATRT from Harvard, Philadelphia, Los Angeles... to bring you what I think is the very best chance for her survival.

Wait, AT-what? what is it?? say it again. Can you spell it out for me?

Atypical Teratoid Rhabdoid Tumor.

Or we can make her as comfortable as possible so you can take her home. It's really up to you, what you feel is best for your family.

You mean there are people who don't try to fight it?

Actually, yes. Some families decide that it's too much medicine and too much to put their child through.

So they take them home to die????? (horror is streaked across our faces) What are the chances then?

She likely would not see her first birthday.

No, we're not going to do that. What kind of possible success are we talking about?
In babies her age.... 3...maybe 5%. But there are survivors. There ARE children who beat this. That's all you have to focus on, if that's what you choose.

At barely 3 months old, we had to make the hugest decision we will ever have to face: doing everything we can to save her life, or take her home to die. And just like that, we told ourselves, we have to try. We're not ready to see our precious baby girl sleeping right there die. We have to try.

On January 6, 2012, our grieving truly began, because we knew from that moment on, we were on borrowed time and we had to make 

every
moment 
count.