Monthly Archives: August 2017

Jaime (SU-DIPG-XXIX’s mommy)

My child is number 29, in a class of 29. The newest student… I imagine her standing in line behind McKenna, and Jennifer, and the other 26 children in the lab, waiting for her turn to follow the instructions given. Smiling, and eager to do her best to follow the rules, and shine. Staring up, hoping she’s next..
I know this is a fantasy, but it’s helping. I know she’s actually in a Petri dish, in a lab refrigerator, waiting with McKenna, and Jennifer for her turn, and an even bigger part of life then we could ever give her. Repeat, it’s helping…
Story time: Katherine was involved in a recent study, and you really have to hear about this. I cried, smiled, cried some more… It’s unbelievable.
Synopsis from the study Katherine was in at Stanford and just released a few weeks ago. – High-Grade Gliomas (HGG’s) are a diffusely infiltrating group of cancers with a dire prognoses (Katherine had a glioma on her PONs). What is thought to be the tumor reservoir, the lateral ventricle (SVZ) for a range of HGG’s including adult glioblastoma (GBM) has been closely associated with decreased survival and increased tumor recurrence. Death… DIPG (Diffuse Intrinsic Pontine Glioma) is the most common HGG of childhood and the leading cause of pediatric brain tumor related death, with a median survival of only 9 months and a 5 year survival of <1%. DIPG tends to not only infiltrate the brainstem where it originates, but also spreads distantly to the lateral ventricle (SVZ).
The debate – Does the cancer begin in the stem cell niche or does it spread there for all Gliomas, adult or pediatric. DIPG clearly starts in the PON’s, and then spreads there, making it harder to treat, and decreasing the survival rate. This also makes DIPG an illustrative tumor type in which to discern these mechanisms for all gliomas.
Yes, Katherine’s is a teacher, and is teaching us things about how cancer affects all of us who could, or will be affected by it. Her tumor provided the Stanford team a rare and valuable resource for their study. Thanks to the team at Stanford, and Katherine’s tumor, we have a potential target for future therapeutic development against glioma invasions, and some insight into how to treat these tumors better for all of us. Yes, us…
In the picture below, Katherine is SU-DIPG-XXIX or SU-DIPG-29.
For more details on the study, go here: http://www.cell.com/cell/fulltext/S0092-8674(17)30823-1?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867417308231%3Fshowall%3Dtrue

For more details on the team at Stanford, go here: med.stanford.edu/monje-lab/people.html#dr_monje
Thank you for taking the time to read this, and helping us prevent a number 30.
Jaime (SU-DIPG-XXIX’s mommy)

She’s bigger than school

 

Katherine should be starting school tomorrow. 3rd grade. One of her sisters is a high school senior, and the other a sophomore in college. This countdown is sobering… We’ve seen it in mourning family posts a hundred times in this one week alone. 
So, I got my sad pictures ready. Kindergarten… all smiles. 1st grade… sadness. Thank you steroids. No 2nd grade. No 3rd grade. An empty doorway. An empty walkway. An empty space. Death. How could I let this happen? I kept thinking, with my head hung low… 
But then I realized something… Something I haven’t shared with you all. And that’s where she truly is, and what she is actually doing. How she’s not only a cancer fighter, and tumor donee, she’s a teacher, a traveler, a successful plot twist to a horrible outcome, a wise and knowledgeable force to be reckoned with and studied throughout the world, by those with the bright minds to understand her message. She’s a juggernaut in the pediatric science world, and we are light years away from her amazing grace. She’s a cure. 
As September goes along, I’m going to bring you into Katherine’s new world. Her fight. I’m going to beg you to change your profile into her picture and share her story to encourage you. You’re going to learn things, cool things, as I learn them, and as she’s already mastered them.
Thank you for coming with me. We start tomorrow.

MNO

I am proud to announce that I will be speaking at the Mama’s Night Out Livermore event alongside, Libby Kranz – Jennifer’s mommy. Thank you for the opportunity to share our daughters story and the reasons why our families need your help. Jaime King (Katherine’s mommy) https://unravelpediatriccancer.org/mno/mno-livermore-2017-guest-speaker-lab-info/

Go Gold

Will you #BeAPositiveForce and #GoGold with your profile pic this September for Katherine the Brave? Please change your profile pic to a child fighting cancer in September. You are 199% approved to take Katherine’s. Show people why she mattered. Thank you… #BecauseIMatter

Faded memories

In a week my life will come to a head and my heart will crush over and over as I drive by and see the kids, and frustrated parents, and busy parking lots. I will avoid it as much as possible, to not cause a scene. I will hug my kids on their way out, wishing them luck, and sob alone. Everyone will stress out over their basic life, and I will fall apart over my tragic one. You’ll all expect this from me. It’s my new role in life. To remind everyone how lucky they are, by sharing my miserable existence. 
I wonder if Katherine’s 3rd grade teacher knows she won’t be there this year. I wonder who her third grade teacher would have been. I suppose they won’t know that a child they would have had has died alone, as her mind was fully working and her body completely shut down. I doubt anyone at her school even remembers her this new school year. I have no communication with them. No ones reached out. Their all excited about the new recruits and getting started on a great new year. I’m terrified. I feel like if I did reach out I’d be pushing her death on them. Again… and what would I say… “Please remember my kid.” “She loved school.” “She loved her teachers.” “She was so smart and tried to be a good student.” I know her kindergarten and 1st grade teachers remember her. But I haven’t heard a peep from anyone else who she interacted with there daily. I don’t even know who they are… my life was in turmoil. They’ve never made an appearance, I never reached out. I know everyone knew her. They all stared at me strangely for a year when the diagnosis came down, and several walked up and expressed their remorse. How could they not remember her… I’m so heartbroken because I know in my heart that they don’t. 

She just faded away, and that was it. A soul gone and everyone moves on. Removed from the system with one press of a delete button. A blip in the school district database. Edited out of our reality too. How alike humans and computers are. But a restart won’t fix this error. How can nature be so heartless. To allow people who interacted so closely with a human being, cope with that beautiful human beings death so easily, by erasing her from their thoughts. Removing my child from their subconscious for their emotional stability.
I wish I could forget this whole tragedy. But I can’t. All I can think about is those who can, and I’m envious. I don’t want to forget her. I want her here. Even if it’s just memories. But to have a moment to breathe and not remember the loss, to forget that there was a precious human being torn from our family would be a nice break too. To have a basic life. No wonder they did it. No wonder they forgot. Maybe it isn’t natures cruel response. Maybe it’s easier to delete. 
I’m sorry Katherine. I’m still so sorry. I love you. Loves and Kisses sweetie. See you next time. 👋

Graduation

My now youngest child graduates this school year. Then that’s it. David said, “One more year of PYLUSD. Doesn’t seem right…” When my youngest nieces and nephews are graduating, I’ll be attending their graduations and not my youngest’s graduation. This just hit me. I hate my life right now. Everything about it. It’s like a piece of me was ripped out and the rest of my body still thinks it’s there. Trying to find it. The sudden realizations are killing me. I want and need an escape.

Brave

Where are you my sweet Katherine? Are you off somewhere still being brave? I know you loved horses but we’re still petrified of their size, yet you still got on them for us, for my need to fit it all in, and I’m sure you knew time was of the essence. I hope you know that you don’t have to be brave anymore. You can relax and be a normal kid now. Wherever you are… (can’t stop crying)