Daily Archives: May 11, 2016


*Warning – Graphic*
So for today’s #GoGrayInMay post I wanted to mention the supporters of our children suffering with brain cancer. Thank you to all the family, siblings, friends, people/strangers who give moral, monetary, supplies, food, or any kind of support, period. You suffer too. Sometimes I think some of you are suffering just as much as we are in all of this. The people that brain cancer affects, and the ones left behind in its wake, are the true sufferers. Katie deserves more, and so do we, right? Why do we have to watch this? Something needs to be done. You have had to hold us up. Show up with items we needed. Sat with Katie while we ran errands. Assist me in bathing, feeding, and being there to do things as simple as loving her when I just couldn’t give anymore. Your well intentioned support is the only thing that’s kept us afloat emotionally, physically and financially. You shop for us, clean our house, sit with us as we lament on our current situation, reach out for additional support for us, and just care for us period. We’ve had many people send, deliver, and just show up in general to help. I’ve had many friends help me bathe Katie because of my back. To give an example of the gravity of this task, I’ve attached a photo. Katie HATES baths. She hates them more than not being able to eat sherbet. That should explain how hard this task can be for a child we don’t want to have anxiety, ever… I wanted to share this photo, of Katie and Jill, so that you understand how hard it is to be our friend right now. Yet, here you are. Thank you, and this is why we GoGrayInMay!
#PleaseShareKatherineStory #MoreThanFour #DIPG #FourPercentIsNotEnough #KatherineDeservedMoreThanFour #GoGrayInMay #Truth

Fancy Nancy

Katie got to spend a night watching a play of her favorite story, “Fancy Nancy!” She met the illustrator Robin Preiss Glasser, who threw an after party for opening day for all of the actors, and for Katherine. Seriously one of the best nights Katie has had in a long time. She was so mellow, for once in a few days, and just let them color with her, and got all of their signatures. She also got M&M’s! Thank you to Rachel for all that you did to make this happen as well. This was one for the books! 🙂 #katherinethebrave #dipg

Update – Katherine’s OK

***Warning – Long Post***
Important stuff first. Katherine is ok, we have just been inundated with items due to her increasing symptoms, so we’ve been rushing some things through in the past few days. We apologize for the lack of posts, but I have just not had ONE second to do so. We are watching our childs life disapear before our eyes, and it’s wearing on us emotionally. So much so, that we are mentally exhausted every single moment and what little we have is focused on our kids. We meet/talk/confer with Hospice daily. Our main goal right now is making Katie comfortable, happy, and keeping her peaceful. She shouldn’t be stressed at all, and I’ve expressed that to them. If it was me, I’d want happiness, and that’s what she will have. Hospice is amazing, and they are on the same page and totally on board with our wishes to be one step ahead of her suffering. I promise we will try to get on here more as the days continue to move along. Thank you all so much for the well wishes, and for everything you have said to us and to Katherine to encourage her to fight. Here is a list of her latest symptoms (these symptoms come and go, some are permanently gone, some are increasing):
1: Walk on her own freely

2: Eat on her own holding a spoon

3: Grasp or hold items for extended periods

4: Go to the bathroom on her own

5: Speak and express herself frequently

6: Eat Sherbet

7: Build Legos

8: Get in and out of bed

9: Swallow her own saliva

10: Control hiccups

11: Play with her favorite cousins and friends

12: Left eye is swollen and hurts/rolls around

13: Bring up phlegm

14: Drooling

15: Fears of being alone

16: No longer able to color

17: Anxiety
I share these symptoms with everyone to bring awareness to this horrible disease, and to all of the human blessings that it slowly takes from our children, our child, so rapidly. It’s an attempt to take you into our world, and as graphic as it is, our honesty is necessary to push for funding and support. The more people aware, the more funding we will receive for this “rare” cancer.
And even through this all, with all of these symptoms, she smiles. She smiles a lot… She insists on others joining her, and she wants to live.