Some girls are just born with glitter in their veins

light

Still not over this hump. We tried the new meds. I talked to her this morning about trying to eat even though she was so scared.   She was so excited to eat. Her eyes sparkled as she took those few bites of chocolate gelato.

Then she vomited again.

I felt her collapse in my arms.

Defeated.

Both of us in that moment. I hurt for her.

Tony cried with her. A pure outpuring of love and a ache so pure for his daughter. Seeing my first two true loves like that . . one laying weak and hungry . . the other broken and scared  sitting over her. . . It was beautiful and touching and heartbreaking.

. . . love

Then I sat behind her. And I rubbed her head and we “talked”. She was so deflated from her almost eating experience she couldnt speak. So I talked and asked questions. She would squeeze my hand to answer.

She is scared.

. . of whats happening to her body.

So I talked to her about it. About our goals for her care. About how it ok to be scared.

I told her I am a good mommy,  I will always take good care of her younger siblings. But that she will always be the one that made me a mommy and I will always be grateful to her for that.

That Daddy and I are best friends and we will always take care of each other. .DSC_0198

. .. We will won’t we honey?

And I told her how much I love her. Enough love to keep our hearts bound together always.

. . . and always.

She requested a nap in our bed while we talked with Jonathan. I asked her if I could take Jon Boy to Starbucks for a talk (its where we always do our best talking). I think she understood and squeezed a yes.

It was hard to leave. The girls were both napping and Nicholas was happy to play with Auntie. So we left.

IMG_3741We both held his hands and skipped through the parking lot. My husband and I taking our boy to begin to rip apart his whole world. At least he got a doughnut during it . . .

I asked if he knew had any questions. Its how I have started all our conversations lately .. he said yes. “Jennifer has a brain tumor. And she is still throwing up.”

Yes buddy thats right. I told him the bad cells, the cancer cells are taking over the good cells. That the doctors arent trying to make the cancer go away anymore. That they are trying to make her not have owies and stop throwing up. …oh please please  PLEASE let them make her stop throwing up.

We told him that he doesnt have any of these cancer cells in him. . . and neither do we. We told our 4 yr old what we do when we are sad or mad. We showed him what it looks like to be sad.

And most importantly we told him how desperately we love him to. That going to cousins and friends houses is because we love him so much. . . because he is such a good boy he deserves the special treat.

I asked if he had any more questions and we headed home.

**oh the irony**

**oh the irony**

Our girlie woke up and got a new dose of meds and seemed to really perk up. She drank water and was keeping it down. 3 hospice care people came. To talk about God (do they read my blog :) ) and to access her port. She wasn’t overjoyed about it but handled it well. She laid down almost asleep as they dosed her with steroids . Then she threw up. This was the first time that I think scared both of us. She was laying and gagged on it at first. I yanked her up and held her as she quivered forcefully emptying her already empty tummy of the liquid she had drunk.

But her emotions didn’t dip so far this time around. Maybe our talk helped her some.

The suppositories I give her (phenergen) seem to really help her. I know adults who have taken it and it knocks them out. But it perks her up. So for our evening dose we got a little happy time in as well.. . Until the headache hit. She got ehr first dose of Morphine tonight.

Our 6 yr old got morphine. Right after her methadone. And it didn’t knock her out.

How is this our life right now? How did this happen?

We snuggled til she slept and carried her to bed. To give her a dose of her anti-seizure meds and soothe her to sleep.

Through out this misery there is light.

A friend who lost her daughter. Middle of the night a few years ago. She texted to see if she could do something. I gave her something to buy, it was helpful but really I just wanted to hug her. And thank her. For sharing her daughter and their story IMG_3733with me. It reminds me that though this horror of this time . . . a time that seems like nothing could be worse. . . It can be.

It will be.

But today I get her still.

 

 

Through out this misery there is light.

My family watching our boys. Filling them with love and helping them find bonds and trust. And picking up JLKs medicine from 3+pharmacies. And setting up a schedule to face time with our kids.

Through out this misery there is light.

Friends dropping fruit and toilet paper and beds. . . Filling in the gaps to run the household.

**from the Bass Center so many colors**

**from the Bass Center so many colors**

Throughout this misery there is light.

The power of social media. Raised an incredible amount of money and awareness.

I write for me . . my outlet. I write to spread the word about the horrors of childhood cancer. I write to help other people who will continue to come after me until awareness is raised through media and forced upon the government.

 

 

Throughout this misery of today and tomorrow. . .

she is always my light.

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