I had found out about a fundraiser earlier in the week that was happening tonight. Another family lost their beautiful daughter to the DIPG beast and started a foundation a few years back.
good people doing good things <– check them out!
They welcomed my mom and I and baby Charlotte to attend. I debated until 30 mins after we should have left whether or not I should go.. . sick baby…I was tired and wanted to blog.. and it scared me. I went and I am glad we did.
Driving through palo alto.. a city we spent the bulk of the last of her life.. I had to look down at my lap as we drove through those familiar streets. I felt
.. . cold and lonely. .. . full and warm.
One town that fills me with such contradictory emotions. I know it’s not time to go back to visit the hospital yet.
I wanted to go to meet the founders of this organization. To learn from their experience and get advice. There are so many options and ways I can go about trying to make a difference. Trying to figure out the right path for me and my family… Figuring out the way I can best utilize my talents is proving to be daunting. I don’t pray for specifics a lot.. but I have been for this. To guide me the right direction.
They were gracious and open. Willing to help me in any way they can. They are dedicated to finding cures for pediatric brain tumors and are willing to share what they have learned to help me find my way to help the cause.
Charlotte… red eyed and snotty nosed still drew a lot of attention. In particular, the other reason I wanted to attend the event.. Dr. Monje. She is the researcher that has Jennifer’s cancer cells.. the one whose lab was able to successfully create a cell line from them to learn and to share.. to collaborate and give a piece of my girl a chance to travel the world in search of a cure. She was drawn to baby Charlotte without knowing who I was. (perhaps pushed by a sassy pants 6 yr old???)
She was genuine. And kind. Smart and dedicated.
Just like my Jennifer’s doctors and social worker. We were so lucky. I only knew them 3.5 months… but I miss them. The interactions we had.. the way they made my daughter smile..
She spoke of a trial in the works for DIPG. Something to give parents hope. The only thing left after hearing there is no cure..
Driving home though I started to think .. and hurt .. for her and other researchers.
Somebody has to be the one to physically get the tumors out of our childrens bodies
. .. . damn.. .
What a gift they give us by doing that. I told her that if I hadn’t had the option to send Jennifer to her I think I would still be laying in bed holding her.. telling Tony I needed just one minute more. Instead about 60 minutes after she died I kissed her head and walked out of the room… with Tonys assistance if I’m being honest.
Those last 36 hours changed her. Altered the way she looked.
she was truly still so beautiful.
and Forever 6.
That couldn’t be easy to.. well… to do what they had to do to rid her body of those tumors and to help her make a real difference in this fight.
She explained to me that DIPG is truly just horrifically bad luck. The wrong cell changes the wrong way at the wrong time.. BAM. DIPG.
So when I thank her/them for the sacrifice they make it isn’t for Jennifer. No. its for all the other kids that I love.. all the adults impacted by cancer that will benefit from finding a cure and treatment for the hardest cancer to unravel..
So many pieces to this puzzle.. so many layers of grief.. so many sacrifices from different people.
I also found out only 1/3 of the donated tumors actually make it to be viable cell lines.
That’s a good job sissy.
Mommy is proud of you.