Daily Archives: May 3, 2016



So my statistic today is more of a lesson on #DIPG as a whole. If you have time, and you are still unsure as to why some kids live longer, or are confused by our DIPG struggle in general, please watch this video. This doctor, like many others, is doing his best to explain the disease, the differences between brain stem gliomas, the lack of good drugs, why biopsies are more prevalent now, and the struggle to cure it.
If you decide to not watch this video, I want you to consider something else for me… Funding is determined based on need and want. The needs there, but we need more want. Do you want a cure? I know I do. And thats because we know the need and now we want a cure. So make people aware. Awareness will force the want. Understand it better, speak of this cancer, knowledgeably, and others will follow and want to save our children as well. Saying it’s an awful cancer isn’t enough. Know why it’s an awful cancer. Please. 

Update on Katie:

Katie is having an unbelievably wonderful day. She has a little gurgle, but that’s common I suppose. She made it on a walk with mom and dad. She also made it to acupuncture. She used her walker today as well.
Thank you for standing by us through all of this. My crazy posts. My frustrations. My sentimental moments. May is going to be a hard month for us, so please hang tight and thank you.
Katie’s Recent Symptoms:

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
#IWantACureNow #MoreThanFour #KatherineTheBrave

11 Months Post DIPG Diagnosis

Yesterday was #KatherineTheBraves 11 month anniversary post #DIPG diagnosis. She is still alive beyond their expectations, although struggling. However, today has been a good day for her. We are going to take her on a walk to celebrate how good she’s feeling.
Her 12 month post diagnosis anniversary will be my 40th birthday, June 2nd. We want her to make this. She needs to prove them wrong.
This was Katie on May 2nd, 2015. 30 days before they told us that she “would” die of cancer. I remember it like it was yesterday. I relive that day every day, it’s the good memories that fail me now.

The Let It Be Foundation

Please join Katherine, and us, for the Let It Be 5k. The LIB foundation took our family in and helped us, when many other foundations locally would/could not. We are outside their usual zone, yet they still come to see us and offer donations of food and gas monthly. The LIB foundation was created in honor of Karla Asch-Rosen (june 29, 1990-february 5, 2006) who passed away of DIPG.
Katherine will be there, barring any serious issues again. She will be in her stroller and ready to do this!
If you’d like to join us, please click the link, and select family donation. Make sure to note: #KatherineTheBrave on your order, and the password is “Katie”, and they will move you to her team. Let us know if you’ve already signed up and we will ask Melinda to ensure you are on our team.
Thank you so very much everyone. Community. Support. It makes a difference.