Tuesday, August 30, 2011

Keep them in your prayers...

So many kids are struggling with DIPG right now. Symptoms are reappearing and kids are losing their basic body functions quickly. DIPG takes away their ability to eat, swallow, speak, walk, move, go to the restroom, see, hear, regulate emotion, and eventually breathe. It is sometimes a long road where symptoms slowly reappear and at other times symptoms seem to quickly appear out of nowhere in a matter of a days time. It is horrible to hear about, horrible to watch and horrible to image how your child feels going through it all.

Please keep these kids and their families in your prayers as they are currently battling:

And countless others...

Please keep the parents and siblings in your prayers as well as other family members and friends that are still living through a loss. Thank you...

***Since this post a few weeks ago... Allison, Roan and Caleb have passed... :O(

MRI Tomorrow

August 30, 2011

Well, Oliver's MRI that was originally scheduled for September 14th has been moved up to tomorrow. The increase in symptoms has worried us tremendously. Who knows what tomorrow will bring. I pray for good news, but expect the worst. I expect to hear that the tumor has grown. The dreaded word... 'progression'... something I never want to hear in regards to this horrid disease that has embedded itself in my child's brain. My stomach is churning right now and we aren't going down to Iowa City until tomorrow. His MRI is scheduled for 11:05 am tomorrow. Please keep Oliver in your prayers. PLEASE pray that his tumor has NOT grown. Pray for a complete healing. I KNOW that Heavenly Father can heal him if it is HIS will. It doesn't matter WHAT we do here because He is ultimately in charge. Although I struggle at times with my faith... that is something that I truly feel. I don't know if I'm angry at the idea of not being able to be in charge, to not be able to do anything for Oliver. It is NOT in MY hands. It is NOT in the DOCTOR'S hands. It is NOT in OLIVER'S hands. It is in Heavenly Father's hands. Although I know that, I am still so saddened and angry because I just don't know WHY yet. Knowing this doesn't take the pain away. I get so frustrated when I hear "You just need to have faith and he'll be healed" or "My child BEAT this disease" as if their fate lies in our hands. The kids who are survivors aren't STRONGER or MORE IMPORTANT than the children that have passed. It was just Heavenly Father's will. You may have faith that they will be healed, but it isn't because of your faith. It was just Heavenly Father's will. Anyways... just had to get that off my chest.

I've been following MANY blogs about other kids and their families' journeys with DIPG. We are all at different stages. Just tonight I've read a blog about a mother grieving after her daughter's passing 11 days ago and how difficult it's been to go through her things, a blog about a little girl passing just tonight and a blog about a little boy struggling with skin irritation and pain because of medicine and this disease. This young boy, Caleb, was diagnosed one month after Ollie so I've been following his blog from the beginning. He's had a second round of radiation and his health is declining. Oliver has his MRI to see if his tumor is growing. As I'm typing this another child will be diagnosed, another child admitted to Hospice, another child showing the first signs of this disease while their parents are completely unaware. It just makes me sick to think about.

Again, please pray for good news...

Down on the Farm

August 2011

Today we had the wonderful opportunity of meeting Angel Dominic's family here in Iowa. He also battled DIPG but unfortunately passed away in September 2009, only a few months before Oliver's diagnosis. Dom's grandma, Marla, painted many eye patches for Dominic, I think she said over 70, and after Oliver's diagnosis we received a box in the mail with a few, featuring - Spongebob, a guitar, baseball glove and bat as well as a smiley face. She's painted hundreds of them for kids that have struggled with double vision because of this type of tumor. He loved them. After a while I started to paint him some as well.

It took far too long for us to get out to visit Marla and her family on her farm, about 2 - 2 1/2 hours away from us. She had called me early on in this journey and I was so grateful that she reached out. We talked for a long time and I was so happy she called. She told me a lot about Dominic and the one thing that stuck out was his love of eagles. Every time I see an eagle, I think of him.

Unfortunately I didn't get to meet his parents since they were working, but I got a chance to meet several of his cousins, his aunt, grandparents and his brother and sister. Marla said it was the first time they'd ever met another child that had the same thing Dom had. I just kept shaking my head. It doesn't seem real. It just doesn't.

The minute we got there, we were greeted with a hug. The kids immediately started to play with one another and we were shown all around the farm. We all got a ride around the place on the golf cart which unfortunately broke while we were there! Eden clicked right away with Dom's cousin, Hailey who was close in age to Eden. They jumped on the trampoline together all day long! The kids jumped on the trampoline, they played video games, picked some vegetables from the garden and saw all the animals of course! Marla had two new piglets that she wanted Oliver and Eden to name and they came up with the highly original names....... "Babe" and "Wilbur". They had chickens, two horses, several cows, kittens and the piglets. Oliver LOVED it. I knew he would because he loves animals so much. He told me he would love to have a place like that.

Marla and I got to talk a lot about the journey. As horrible as it is to talk about, there is a great comfort sharing thoughts and feelings with someone that 'gets it'. I felt so comfortable there... like we were family. It was such a wonderful visit. I hope that we can go and visit there again soon!!!

Chasing the chickens!

Finny playing in the sand where Dominic would always play.


Oliver -- one of the wild animals!

I LOVE this picture of Lennon smiling, bringing the chicken around for the kids to pet.

It was surprisingly soft!

Buddy and Anne - The horses
Lennon, Ollie, Eden

Eden, Hailey, Jaren and Finn with Babe and Wilbur

Cute lil' pig butts!

Katie, Dominic's aunt, Eden and one of Dom's cousins. Eden was driving the golf cart for the first time! WATCH OUT!!!

Hailey and Eden

Finny eating his ice cream cone. Why he scooped it out of the cone with his hands to eat it is beyond me!

Picking some veggies from the garden.

Playing with a caterpillar

Logan, Dominic's cousin and Oliver

Eden and Lavender, Dom's sister. She had the most beautiful head of red hair!

Trying to blow on a blade of grass to make it whistle.

I LOVE this picture.

I love how Finn is just hangin' with the boys. Finn with Hunter, Dom's cousin, and Lennon, Dom's brother.

I hope Marla doesn't mind me posting this sweet memorial in Dominic's memory. You can see it as you drive up the driveway next to a shed on the land. It choked me up quite a bit to stand there in silence and think of what Dominic was like and what he and his family have gone through. I thought of my own journey with Oliver and couldn't help but cry thinking of him and all of our DIPG family. It was certainly a very special place.

Oliver and Marla "Granny on the hill" :O)

Ed getting jumped on by all the kids! He's my big kid!

Oliver taking some time to see the animals again before we left. Here he is trying to bond with the chickens... walking like them... :O)

Oliver and Babe

Babe and Wilbur

A perfect end to a perfect day.



A few days later Oliver received this in the mail...

Oliver and the sign Marla painted of Babe and Wilbur! Too cute!

Live to 9 - WAGG

August 26, 2011

Tonight was the final 'Live to 9' of the summer. It's been fun getting out and enjoying some music and seeing my friend and her family on a regular basis! I wish they played a few in the fall, but no such luck!

Jaren in Oliver's Captain America gear. He was throwing the shield around like a frisbee all night long!

Oliver and Charley

Seriously... she is adorable!

Eden and Charley

The Waterloo Black Hawks hockey team was there tonight and the kids got to meet the mascot 'Tommy Hawk'. Jaren and Bella.

Bella, Jaren, Tommy Hawk, Eden and Phineas. I was surprised that Finn wanted to see him because he didn't care too much for 'Herky' the Iowa Hawkeye football mascot. He must have gotten over his fear of mascots... although he is still scared of whoopee cushions, flarp and fake moustaches!

Oliver and 'Tommy Hawk' biting Ollie's head! LOVE IT!

Jaren and Bella. He's practicing dipping already! It is so cute to watch them play together!!