So you know that whole no news is good news thing . . . not always true.
Her tumor responded well. It actually shrunk.
But . . . buts are never good are they?
More grew. The blood started pounding in my ears. This feeling..this pressure and sound in my head has only happened twice now. On her birthday when we got the prognosis . . . and yesterday. Its like the my ears are pushing outward . . . trying not to hear what they are hearing . . . and my throat closes . . . clenches up trying not to swallow the information being forced down.
I know at least one on her frontal lobe . . and sugaring on her spine. Her dr. a pediatric nero oncologists…said its one of, if not THE most aggressive cases she has seen.
I asked if it changed prognosis . . . I didn’t get a super straight answer on that one other than yes . . . its not good.
She said it explained the vomiting . . . and the personality changes. Her personality has changed so much..The other night she woke up to use the restroom and she was herself. Her sweet singing nighttime voice was back. Her love in words and actions for me was back. And as I left the room she said the last words we say each night.
“see you in the morning”
Oh wow . . . one day . . .
one day soon . . . those words will be -see you in the night . .
I can’t say how long she has. Obviously nobody really can.
I told Tony its time to make a few decisions. Will we do a feeding tube?
She hasn’t eaten or drunk anything more than a few sips since last night. How did that happen? Like she got so much worse once we knew.
Maybe she just needed us to know. For us to let her know it was ok to be tired and to be sick.
Ok to be dying . . .
Jennifer Lynn . . . it is not ok. But I will try with every fiber of my being to make you believe I think it is. I love you.
Today was rough. Lots of vomit . . . and bile. And sleepiness. But her true self re-emergered too. She enjoyed me and allowed me to enjoy her today. Thank you.
One of the times right after sitting behind her while she threw up and feeling her body grow sharp and ragged . . . then relax . . . I talked to her. I just told her when you are sick . . . and struggling in this family, we do whats right for you. Today thats you . . so you decide. You want your brothers here . . . they stay. But if you want some time without them we will make that happen too.
Before they left I snapped a picture. Looking through the lens I wondered if this would be there last one together . . . or if I would know when the last will be.
Baby Charlotte is still here. Again Jennifer’s choice. She is wonderful for all of us. She is easy and happy and plays on the ground.
I let her sleep on her own a bit to talk with Tony. Other than feeding tube its time to start discussing after . . . Will we cremate her?
How the hell do you decide that. I hated it thinking about it for my parents . . but this . . .its not right.
We talked about donation. We always said if we lost a child we would donate everything we could . . . They might not even take it if we could . . .
But her tumor. They better take it. And study it. And learn from it. I hope so much we can donate that. When a cure for DIPG is found she will have played a part.
The question I have yet to ask is what about pinkie? Her beloved stuffed animal. Will she go or stay with me?
Since she was in a chatting mood at bedtime, I asked as many questions as I could think of until she was done.
Before she went to sleep we talked about heaven. She thinks it smells like watermelon. All the time.
I think so too baby . . .
but don’t find out just yet . . .
I still get – to see you in the morning.