Our number one concern is all of our kids. So if you see them please just be normal and smiley with them. And remember even though JLK is the one with the medical diagnosis all of our kids are in this new world and need the same (maybe more) love and attention. 

Cant say what we will need at this point in time…but if you have information to share I would love to hear it (hence my posting!) Tomorrow will be family day so please dont expect responses though.”

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I woke up crying and I am sure the day will end much the same. I am just so sad… I remember that day. How twisted and fast everything was moving.. But one thing remained… hope. For just a few more days we had hope..

Hope it would end up not being cancer.. hope that her treatment wouldn’t be so awful..

But it was futile. It was cancer.. A lethal cancer.

hopeless.. I realized that moment that hopeless is the absolute worst thing a person can be. .

I am glad though to have that simple FB status frozen in time. For my surviving kids to know.. that they were always at the front of my mind. That I was always thinking about them and worried about them.

That they have all mattered more than anything else in this world. .. and even death cannot change that.

3 years ago I was a cancer mom… I just didnt know it yet. .

I remember this day though. . She was admitted to the hospital the night before.. A Saturday morning MRI. She was supposed to be having her birthday party.. The nurses made her a card and sang to her.

The waiting room was empty. It looked so foreign to me then. Tony, my mom and baby Charlotte were the only other ones in there..

Taking much longer than they thought. I knew then.. It was because they couldn’t figure out what was wrong. .. Why her eye was turning in.. I couldn’t stop talking or moving.. I knew they were looking at her spine now, just trying to figure out what was wrong.

I remember so clearly complaining .. How hard it would be to not know what was wrong with her.. That I wasn’t going to be able to stop worrying..

I remember the corner of the room we sat in..

They called us back. She was in recovery, we could join her. Siblings are not allowed back there, but since she was the only patient they let us all back. She woke up and was offered a popsicle.. I made them call to be sure it was gluten free.

The nurses were so kind. So upbeat and cheerful.. I knowingly asked if they scanned her spine.

No. No she smiled.. they didnt.

And we knew. In that moment the 3 of knew they found something in her brain. The nurse answered the phone… and then she knew. Her face changed and she ushered us back.. into what I would soon learn was the pre-op room.. By the end of treatment I would know both of the rooms with my eyes closed..

I asked to go to the bathroom.. I needed a moment to collect myself. I came out to Tony and a circle of drs… maybe 8 and Tony.

A tumor. On her pons. .. I cried. But not a lot. I felt my face go red hot.. Tony and I held hands. He did not want to see the scans. ..

They were our team.. they would stay with us every step of the way they said. They didnt. We never saw them again after this stay.. Not with her diagnosis.. I wonder now if they had to call them in .. if thats why it took so long.

Tony and I took just a moment. .Then I called my mom in and told her.. .

And that was it. I was changed… the start of my forever.. I feel like right then is when I became a grown up.. My daughter was in trouble .. real trouble.. And so I grew.

We talked to a surgeon.. they would do a biopsy to know more.. We talked to more drs..Tony even took her to do a Halloween craft. . .We were given a option.. Stay until Monday and her case was seen by the tumor board or go home and come back..

I asked a lot of questions.. We waffled back and forth. But finally I asked the very pregnant “head dr” of her case could it rupture or something like that? It there a chance something could go wrong at home? She said no.. so we went home.

I had called my friend to get all of Jennifers things from home.. to make her room more comfortable.. We had just started a kitchen remodel.. I remember calling the contractor and leaving a voicemail telling him if he didn’t call me back I would get his wifes number and call her on her Vegas trip… we needed that key for our friend to get into the house..

Then I called her and told her to put it all back. ..

And we went home..

I could write all day.. to remember each and every moment…Because it brings me somehow closer to her. ..

because the moment I stop.. the second my fingers lift from the keyboard my tears overwhelm me. Hot and full.. Pure sadness.

I ache for her. I hurt. All over every piece me.. The colder.. the overcast and foggy… It suits the way I feel .. I feel heavy and burdened.

This time is the beginning.. the opening of a floodgate of memories.. These 3.5 months she fought.. and lost.. Step by step she fought and was beaten .. She never had a chance..

All these holidays now.. stained not just with her absence but by her struggle. 

I can’t believe she is gone. I can’t believe this is real. She is my daughter. I had so many plans. So much I had already dreamed about doing.. so much I had prepared for. ..

how did this happen jennifer?

how did we get here?

how am i still here..

without you.

until there is a cure..