So you know that whole no news is good news thing . . . not always true.
I waited to blog so I could try to somewhat wrap my mind around the news . . and to just sit with it for a day. I had pushed for a phone call on Monday, to not wait til Wednesday for the call. When the phone rang Tony and I both went into another room, luckily we had made dinner plans and they just kept the kids with them. Once I hear both drs were there my heart skipped . . . For a moment when Dr Partap started to talk I thought maybe they were calling together because it was such amazingly good news . . . She said the tumor responded well. It actually shrunk.
But . . . buts are never good are they?
More grew. The blood started pounding in my ears around this time . . . actually its happening again right now. This feeling..this pressure and sound in my head has only happened twice now. On her birthday when we got prognosis . . . and yesterday when we got new prognosis. 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 nerou oncologists…(meaning all she does is kids with brain tumors) 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.
I asked if in their opinion it was time for Tony to come off of work . . . yes. I think that might have been what sent Tony out of the room. He is so good to me. He let me take the call. No speaker no shared ear piece. He trusted me to relay it all to him..and some things like the work . . . eye contact was all the communication we needed.
She said it explained the vomiting . . . and the personality changes. That was supposed to be my next blog, talking about how I feel like I am losing her already in some ways. Her personality has changed so much..The other night (I think it was only 2 nights but I swear it feels like weeks) 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 will only have her again in my dreams.
So then I decided that, along with our at least decent MRI results, would be my next blog to explore.
When we heard no cure. No real options. We were floored. We didn’t expect it at all. This time again. We were prepared for I think everything . . . but this . . . I knew it could spread . . . guess . . . but thats at the end.
Oh now I remember. She said when I asked prognosis. This is what we see at the end. The final MRI we might see a little of this.
Tony and I went outside to just barf words at each other. He decided it was best our friends stay and we carry on. I said I needed to call my sister. I did.
This MRI was just supposed to be a new baseline. I have gobs of notes ready to talk about a clinical trial in NY. I had been worrying about the travel for it but feeling like it might be the right one for us.
I cant say how long she has. Obviously nobody really can. But we will find out drs thoughts tomorrow. And the “very limited options” we have. I know her drs are looking and trying to find a trial or an option. I know they care for our daughter…and I believe they care for us too.
I told Tony its time to make a few decisions. Will we do a feeding tube?
She hasnt 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 beleive 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 . . . you like the noise . . . 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.
They are at my brothers house. Happily there . . . so unaware. But together. Thankful for two boys so close in age.
We had planned yesterday to go swimming and then get frozen yogurt today with her cousin Ella. Glad I waited to make those plans official . . I know that Ella’s parents would take her out of school any moment for JLK so I didn’t have to. Because we tried about 4 times to go . . . but she would get weak . . or tired . . . or throw up.
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 for quite awhile so we can tidy up or watch a show. This afternoon she slept in her crib right when we needed to…during movie time.
Then my eldest and I laid together and slept. Thank you Tony for capturing this . . .
We cried together last night talking about our own needs . . And also that of the kids. We want to do what is right and best for her but also for our other kids. All 4 of them and their needs is all that matters right now. One of mine was video/photos of her and I . . . Just casual life ones. We have one of our photographer friends coming this weekend to do family ones. I want really good ones of all the kids . . But moment with her and I Tony can capture.
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? I hate the idea . . . always have. But I am considering it . . . Tony prefers it but will go with whatever I want . . .
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 plan on having home or in a hospice care facility -but I think maybe home . . . And my gut feeling is you can’t donate then . . . We will talk about it tomorrow. 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.
And then she started throwing up so we ran to her.
The question I have yet to ask is what about pinkie? Her beloved stuffed animal. Will she go or stay with me?
This time though she seemed to rally . . . we got ready again and headed to the pool.
It was week by week for awhile . . . I think we might just skip day by day and go to hour by hour . . . till its minute by minute.
. . . Just forever . .
We got to the pool. Its a awesome indoor one and she loves to swim. But this was hard for her. About 5 other kids her age . . . being 6 yr old in a pool. Laughing and running and chasing. How hard that must be for her. The only thing in my life I can even relate it to is in infertility treatment looking at families . . with a jealous longing. Is that how she feels? She should . . . I would . . . but probably worse . . .
She let me take her for a bit. And enjoyed it thinking we were in the deep end . . but then her feet touched and when she realized she could stand . . . she was done. She watched and played with Charlotte and we talked to her about how much she loved the water when she was a baby . . .
She didn’t speak much today. Luckily I had already discussed with her different ways to communicate with me. And I had been thinking about how to ask questions that were only yes or no answers. )One way she answers is a hand squeeze. We did that at the pool. But I held her right hand…her bad hand as she says. I saw her use all the strength she could muster her upper arm tensed and shook with the power of it …. and then a slight tightening around my finger.
I remembered and switched hands.
She chose to go to frozen yogurt still but just with us. I have loads of ideas as to why just us . . . but I am trying to just follow her lead and not give voice to her reasons . . . just to her desires.
Then we went to get her a radio for her room. Tony just put together and built mini bookshelves for her room. She wanted a place to put her drink . . . by the next night (tonight) Daddy made it happen. And we talked about her love for music and that she might want a radio. We don’t own one. Daddy is shopping now while I write.
We tried to go to Target after frozen yogurt. But I could see her quickly deteriorating and when asked she, wanted to leave. She threw up the little she had eaten. But kept it down for 30 mins so that was good . . think..??
Its crazy how changed we are at this moment. I never buy without a sale and a ton of research. But upon initial prognosis we went and got a video camera. Just went to the store and got it . . . Thank you for the support that is allowing us this time together and the ability to do that.
Our plan had been to go our family friends beach house for the remainder of the week. But now we aren’t sure. I am guessing they will re-access her port tomorrow to get fluids in. Not sure how long we will be at the hospital . . . Or if she will be up for it and be ready for her brothers.
And its supposed to rain.
We talked at bedtime. Another gift from sweet Charlotte who just played on the floor of her big sisters room.
Since she was in a chatting mood I asked as many questions as I could think of until she was done. But she said she would rather play in the rain versus the beach when its cold. If I can’t make the beach happen we have options that will make her happy.
And 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.