done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel..

It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look!

I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why.

I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her lab that has my Jennifer’s cells. How much they have been there for me.. caring about me and not wanting anything back from me .. ok so this is it since writing these sentences has me in tears.

why?

I think I just so desperately what to help.. want to make a difference. Want people to see the amazing work these drs are trying to do.

And I guess I don’t want to care about it all so much… I don’t want to have such a personal reason for it to matter to me.

Last night Dr. Olsen spoke about going into the room after seeing a scan of brain stem glioma.. what its like to know you are going into a room to tell these parents there are no real options..  I looked over at Tony a few people away from me. I watched him look at the MRI of another lost child on the screen. I saw his jaw clench. Saw him swallow hard..

..and I remembered.

Being that parent. In that little examine room. Being told this tumor was inoperable.. that there is no cure.. Which really meant there was no hope.

I now know that it wasn’t just because she was adorable in her Belle costume for that first clinic visit that caused her to get so much attention.. it was that she was the very essence of..

dead girl walking..

And we had no freaking idea.

I remember the sound of him crying.. sobbing, begging and knowing he had to go through it privately.. that there was nothing I could do to ease his just beginning to break heart. So I laid in our bed and wept while she slept soundly across the hall.

I wish I could stop that. I wish I could prevent any other wife from having to hear that noise that you can never forget. 400 kids a years diagnosed with this type of cancer a year

Most places and events I have been to lately people were there and knew about pediatric cancer. Last night though I had a glimpse into how scary I am … how scary the truth is. Trying to talk to people.. about what I now know.. about the statistics that are so haunting.. and trying to find as many moments to say her name.

Jennifer.

Its hard. That balance. But I am learning.. as much as I want to scream the statistics .. the truth as I am learning it.. I need to go slowly.. But I am learning.. because I need to have it matter.

I don’t think I ever shared this.. Dr.Monje and team wrote  this paper that was recently published..  the goal as I understand it is to change the way they radiate these DIPG kids beginning at Stanford. DIPG is in the brain stem… back and bottom part of their heads..The tumor also tends to lurk in a very specific area in the frontal lobe part of the brain.

JLKs initial tumor in the brain stem (pons) responded well to treatment. It actually shrunk.. but it had already progressed in her frontal lobe. Its a question I have carried with me since we found out it had progressed..  I will always wonder if we had radiated her there .. if she would have gotten more time..

That’s so wrong.. that I don’t even wonder if it would have saved her.. but just more time.. more low symptom time is all I wish for now.. We only got 4-5 weeks post treatment til hospice started.. her steep yet cruelly slow decline.

 

I put it all together now.. if we could have used some of Olsen’s tumor paint to see the fucking cancer and Monje’s updated radiation to attack it.. maybe we would have had some more time.. Just those basic days at home that I long for.. days like today where we played, ate lunch, made up a new game and watched some shows..Nothing fancy.. just perfect..

…well except for the unrelenting empty in the room.

At least three times today I did something for 4 kids..

..is she pulling on my shirt reminding me she is here?

oh honey..

The Jennifer Lynn Kranz fund is cited in Monje’s publication. We are doing something. The money we are all raising for these incredible minds and loving hearts is helping. I am proud to be part of the ‘glitter squad’.

Her tumor is pictured in 2a and 2d. She is creating change.

I am still raising her to do the right thing.. to help those that need it.. To stand up and help…

there it is..
I wish I could hug you Jennifer… tell you how proud I am of you.

You done good little girl. ..

You done really really good.

…until there is a cure