Good Will Wednesday. (Special Phoebe Edition- part 2) What you can do in the fight against DIPG.

Happy Good Will Wednesday, friends! Recently I shared a brief story about my life-long friend Sarah and her sweet, three year old daughter Phoebe. If you didn’t catch the previous Good Will Wednesday Special Phoebe Edition, you can read about it here. 

Sarah and I go way back. Back to days where I had a terrible perm and was even less confident in my clothing choices than I am now. In the midst of my pre-teen awkwardness, Sarah introduced herself and we became fast friends. We’ve stayed close despite moves and distance and busyness with kiddos. Sarah is part of my circle and I am part of hers.

Sweet Phoebe with Mom and Dad.

I received an unexpected phone call from Cole, Sarah’s husband, in March.  He broke the news that their precious daughter Phoebe had been diagnosed with a rare, terminal brain tumor called DIPG. Diffuse Intrinsic Pontine Glioma. This is a tumor present in the middle of the brain stem, an area responsible for controlling breathing, communication between different parts of the brain, and sensations such as hearing, taste, and balance. Surgery is not an option. The statistics are not good. Take a few minutes to click the link below and gain a brief understanding of this tumor.

(Wikipedia DIPG information.)

Sarah, Cole and Phoebe, along with extended family and friends have handled this unbelievable trial with a strength I can hardly comprehend. I’ve been amazed at Sarah’s resolve as she treads this unknown path. They have asked for nothing outside of prayers until just a few days ago. When I received a request from Sarah in the form of an email sent out to a group of friends, I was anxious to act. When a loved one is hurting and there is little to do in the way of tangible actions, you jump at the chance to help in any small way.

The message read:

Hello all,
Sorry for the group email. A huge issue with DIPG is that since it is so rare , there is not only an lack of awareness about it but also a lack of funding for research.
I don’t usually do this type of thing , but I am asking you to take a few minutes to click on the link below to contact our congressmen about this issue. Please tell them that DIPG is killing too many helpless children already,  and we desperately  need to find a cure. We need to increase awareness and increase funding for research to find a cure.  It is very easy and takes only a few minutes.  This horrible monster needs to be stopped. Please help us out if you can. We appreciate it ! Please feel free to forward this to anyone else on our behalf.

http://contactingthecongress.org/

Thank you from the bottom of our hearts!
Sarah , Cole and Phoebe.

 

Everyone is polarized in regards to politics this year. In my adult life I have never witnessed such a divisive election. Let me state from the start, what I’m about to share and request is NOT a Republican or Democrat issue. This is also NOT a political post. I am married to a government teacher, I am the daughter of a retired government teacher and I am the sister of a government teacher. I would rather have to endure the ‘birds and bees’ talk again with my parents than discuss politics one more time.

What we have here is an opportunity to, regardless of party lines, unify our efforts to fight an ugly monster. In a matter of moments you can make your voice heard regarding an increase in funds to attack this hideous disease. Democrat or Republican, I hope you will take a few moments to engage your congressman regarding this issue and other issues that speak to your heart.

Simply click the link, select your state, select your desired congressman/woman and follow the drop-down arrow to select the appropriate topic. I included a personal message regarding my request and why I believe it is necessary.

Please know your efforts are most sincerely appreciated by my family and Phoebe’s. 

E

 

 

6 thoughts on “Good Will Wednesday. (Special Phoebe Edition- part 2) What you can do in the fight against DIPG.

  1. I’d love to do this. DIPG is a monster. I pray daily that some new treatment option is on the horizon. There are things that look very promising being worked on right now, but they lack the funding to get the drugs to the bedside. It’s a horrible issue, that I could rant about for days. You’re absolutely right, Emily. This is not a republican/democrat issue, it’s an issue about these sweet, precious children deserve more. Continued prayers for sweet Phoebe and her family. Thank you for posting on this. For anyone who likes facts, here’s childhood cancer by the numbers. http://www.curechildhoodcancer.org/about-cure/childhood-cancer-facts/

    • Thank you so much, Mandy! I know there is little awareness… I didn’t know anything prior to March. Hopefully we can all increase the awareness and funds so the research can be conducted. These sweet kiddos deserve a chance. Hugs to you.

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