You know that sound a roller coaster makes. This is the sound track to my life. . our lives. . right now.
Last night I was almost euphoric. I was pacing around after she ate. Waiting to see if she threw up. She went at that applesauce with such fervor. . such hope. I stopped her from eating too much. I left the room for 10 mins and when I came back she knew her body didn’t want any more.
Tony offered her more multiple times. But her body said no and we listened to her body.
We ate dinner together and talked. Tony commented how strange it was to be talking about burial and tumor donation over pasta with no tears. . . just normally.
I cannot explain how hard it is to see your child not eat. Day after day. To have all of the bones in her body sticking out. . jagged reminders of the monster inside.
And to see moments of her coming back.
See cancer doesn’t just steal your child once. They take them many times over. . .piece by piece.
. . I think we almost forget the girl she was just 3 months ago.
She has changed. Many times over.
And each loss of her we grieve.
Then last night we get a moment. Last night we kept her on the couch near us. we took turns going to her every 10-15 minutes. Once on Tonys turn her found her on the ground. .. sipping some water. With her trademark smirky goofy grin
He asked what she was doing.
She said going potty…
A total JLK at 5 trademark phrase.
wow she every day she has lived at age 6, we have know she was dying.
. .. oh and ps she totally didn’t pee anywhere!
Her Stanford neuro onc dr called. We had a good talk. I have really been waffling on asking for a feeding tube for her. But we discussed again the pros and cons and why we didn’t opt for it in the first place. And then I laughed with her. I mean a real laugh. My first in over a week. It drew Tony back into the room. .
maybe he missed that sound?
But thats how good last night was.
I went to bed with her and struggled to sleep. I was still on such a hopeful high. I keep trying to remind myself she is dying. That this is real. That even though she has these moments. . it wont be too much longer.
And everything changes so very fast.
We went from struggling to pee to incontinence.
quite literally. Overnight. But its not bothering her so thats a huge positive.
And then she threw up in bed.
It was so scary for both of us. Because my sweet fashionable girl tried so hard not to get it on her jammies or on me…. laying next to her . . . kept her head facing up and choked on it.
down we go. its seems so much faster and steeper when you were just at the top.
Today she has slept. Most of the day.
I have been waiting for Tuesday (today) hoping she can make it to today. And yesterday gave me so much reason to be hopeful again for a magical day.
Just for my girl. Thanks to some work on her Aunties part and generous donations from friends and strangers alike.
Thank you so very much!
The boys had a wonderful time while she slept. I got out there. And I practiced.
. .. being a mommy. . a real mommy to them without her. With the ache in my heart we played and smiled with our boys. I got “in the bathtub with my clothes on in. . . ” again.
Then she woke up. She still wasn’t dressed. After her throw up. And many accidents I offered a bath with me this morning and she took me up on it. I loved begin in the warmth of one of her favorite places. . . the water.
This morning the hospice dr came to visit. We ended it with a talk of how much longer. Given how JLK is doing it could be a few days to 2 weeks she is guessing. And what the end looks like now that she has so much tumor progression. I had “prepped” for what it looked like with just a pons tumor.
She also shared with us that many children wait to be alone to pass on. Same as Dr Partap said at Stanford.
I am trying to prepare for that possibility and to make it not a reality frankly.
She was feeling so awful. . She didn’t even want to see/know what the surprise outside was. I gave her clues and she guessed. But I don’t think she believed me. So I got her some to touch and feel. . .
Daddy got her jammies on and wrapped a towel around her. She asked that her brothers and baby sister stay outside. This little request made me so happy since she is pushing Jonathan away. . . protecting her first little brother more than anybody else.
Daddy held her. She touched the snow Even threw a snowball at me. And shared a bit of snow with her sister. We crossed something big off of her own “bucket list” today.
And Jonathan threw a snowball at her. A normal act. I got too mad at him. I will have to tell him I am sorry later. He would never mean to hurt her.
Then she was done. And we took her inside. And she slept.
It was hard for me. I wanted this to be so fun for her. I think all I can do is hope she had dreams of snow. . . where she moved and ran and played in it.