Friday, January 22, 2010

Faces of DIPG

There are so many others that have had to deal with the realization that their child has DIPG (Diffuse Intrinsic Pontine Glioma) or Pediatric Brainstem Cancer. I've spent several hours reading through some blogs featured at (some of the kids are featured on the side of this blog) and cried realizing that I may be in that group of those that are mourning the loss of their child. There are so many sweet little faces and I am so saddened to know that so many people have lost their children due to this horrific cancer just this past year. It is a rare form of brain cancer that only affects about 150 - 200 children a year. Although I have shed many tears while reading the stories of these children and the challenges that they faced, I have found peace and comfort through their parents words. I know that your prayers for us are helping sustain us. Some days are easier than others. Right now Ed is down in Iowa City due to an ice storm hitting earlier yesterday. I've been sad tonight thinking about how it would feel if he was truly gone... what that emptiness would feel like. It just rips my heart out. I feel like I haven't really bonded with Finn (my 6 week old) because of all the craziness going on lately. I feel like my thoughts are always elsewhere. I don't feel as sick to my stomach as I used to feel when we first found out, but the thoughts just won't leave my mind lately.

As a parent you try to divide your time equally among your kids, but this has proved extremely difficult lately. I've had several doctor's appointments so Ed and Oliver have ventured down to his radiation treatments alone. Finn and Jaren have been to Grandma and Grandpa's house periodically while Eden is at school most of the time. Lately Finn has been with G&G Palmer because Jaren was vomiting and then Eden had diarrhea. I've also been in quite a bit of pain lately. I FINALLY had an MRI and found out that I have a bulging disc as well as a slight tear in the disc. I had an epidural steroid injection which actually made the pain worse. I have a tens unit that numbs the pain a bit, but doesn't take it away. It's hard to do certain things. It's been very hard to deal with things when you don't feel well. I feel like I'm going to lose my mind. I've never felt anxiety until last week. I seriously felt like my body couldn't handle the extreme emotions that I was dealing with. *sigh* I just don't know how I'm gonna handle this...


meghan said...

I have been reading through these since our talk tonight. My heart just aches. What sweet faces these little ones have.

HeidiAnn said...

Did my mom get a hold of you Stacy? She wants to come help you one day a week. Let me know if she called yet. Love you!!!

Kristy said...

I don't know you, I live miles and miles away, but I am praying for your family, and especially for little Ollie. Remember, you are loved beyond measure. You have a father in heaven who knows you and loves you. My sincerest wishes and prayers that you are granted the miracle that you so desire.

newmedia said...

I am going to promote the fundraisers for Ollie this Friday during the news at noon.

Praying for you and your family!

Tara Thomas

Anonymous said...

Hello, I designed a race car design for the Toyota cup challenge to honor Angel Zac Talley and the rest of the DIPG warriors. I am hoping that I can get enough votes to promote the awareness of this awful monster!
Here is the link to vote and spread the word!

We hope to get over 6000 votes in 14 days and get DIPG promoted nationally!