Friday, March 25, 2011


Thursday, March 10, 2011

We headed to DeKalb, Illinois to spend some time with our good friends, the Gillespies. Before we went I wanted to set up a time to get together with some other DIPG families in the Chicago area. Kody was diagnosed several months ago, Octavio was diagnosed almost a month before Oliver, on Eden's birthday, November 27. Through many emails we set up a time to meet at a pizza place in DeKalb. I was very excited to meet other families going through this, while at the same time saddened at why we were meeting. It was nice to get together and talk with the families to get their perspectives on treatments, life after diagnosis and how their boys are doing. Thank you so much to Kody and Octavio's families for driving to visit with us. We are so grateful for the support that we have with one another and I'm always praying for all the kids and their families. Thank you to my good friends for indulging my need to meet with these wonderful people during our visit. Also, I was thinking of the Fuller family who was mourning the loss of their sweet daughter, Hope, one year ago tonight. They weren't able to meet with us, but they were in my thoughts all weekend.

Barbara (Kody's mom) and I

Barbara's sister, feeding Finny

Papa and Finny

Kael, Jaren, Kayla (Octavio's sister) & Finny

Kody playing cards with his brothers.

Cullan and Ollie

Kody and Ollie playing with some bendable crafts.

Kayla and Ollie

Eden, Kayla and Briea hiding under the buffet table!

Octavio, Cullan and Oliver

Finny and Ayla... "Here... let me poke you in the face!"

Jaren and Kael

Finny sitting with Octavio Sr., Kayla and Octavio

Octavio and his family, plus Finny boy

Kody, Octavio, Oliver

Sweet little Ayla

Eden and Ayla

Friday, March 11, 2011

Today was a chilly day, so we bundled up the kids and headed into the city. We stopped for lunch at Gino's East before heading to Lincoln Park Zoo with the kids.

I loved all the writing on the walls! Jaren being a pill.

Finny laughing at me giving him some sips of my pop.

Finny's got Cullan hooked!

Ed... not that thrilled with the pizza and the cornmeal crust.

Eden and Finn sharing a straw

Ollie wasn't feeling that great and said that the smells of the city were making him nauseas. Cullan and Ollie

Kael, Eden and Jaren

Trump Tower -- "You're fired!!!"

Navy Pier from a distance.

I took this picture not for the reference of a Seinfeld episode, but for the fact that as parents of a child with a brain tumor, shrinkage is always a good thing! This was the first thing I thought of when I read this sign at the bus stop.

Lincoln Park Zoo. Ollie really wanted to go so we went, but it was so cold that most of the animals were in their cages...

...except for me.
I was mimicking the wolf statue in the background. And... no... no one else saw me do this, other than our dear friends who totally get our nutty humor and you wonderful blog readers!!!

Cullan, Kael and Jaren

Oliver is usually not in a wheelchair, however when he walks long distances his legs get tired. He gets worn out very easily now and the weakness in his legs is coming back.


I loved this structure in the park.

These were some crazy animals we saw!

Our great friends

Our crazy family

The kids watching the leopard.

This was a neat sculpture that had some nursery rhymes engraved in it.

I painted this Yoda patch for Oliver, complete with a glow in the dark light saber

I love this picture that Ollie took of me and Eden.

Eden and Jaren

Ollie giving Cullan and Bear a spin

The Conservatory... with a rope and Colonel Mustard... ;o) It reminded me of Willy Wonka's factory. I think I was just craving some chocolate!

We stayed in the city so we could be within walking distance of the St. Patrick's Day parade the next morning. This was our view from the room. I wish I could have gotten a clearer picture.

Ayla and Ollie

Ed and Jaren. I LOVE that smile!


Finny and Jaren with Daddy

Jaren and Ollie


Finny and his highly absorbant diaper...

Saturday, March 12, 2011

This morning we got up and ready for the St. Patrick's Day parade. I was excited to see the river turned green. There were so many people there it was unbelievable and it was COLD! We bought some stocking caps from a vendor and tried to find some mittens but we couldn't find any so we bought a bunch of socks from Macy's. Hey... it did the trick! A mom's always gotta be creative when trying to solve a problem! We stopped by Dunkin' Donuts for a quick breakfast and hot chocolate to warm up a little, walked around for a bit - I loved all of the architecture, and headed toward the parade route. IT WAS PACKED!!! We stood and waited for about an hour when people kept pushing their way in front of us and we couldn't hardly see a thing so we decided to head to Millenium Park and see the bean. I thought the parade was packed... holy cow it was like we walked into a frat party! Not the best place for kids to be so we headed to the outskirts of the park and sat for a while.

Goin' green for the day!

Gillespies gettin' their green on!

Ayla, Eden, Briea, Kael, Jaren, Cullan, Oliver and Finny - on the bottom

Not happy with the Tina Turner tinsel wig!

Jaren manages to rock out in it!

Eden modeling the St. Paddy's Day bow I made for the occasion!

Our first peek at the green river!

Finny taking a nap. I love how he always puts his arms up behind his head!

We saw this on our way to the parade. TOO FUNNY!!!

Great pic of Ollie

Garran found this card on the sidewalk... Niiiiiice... HA!

Ed and me

Meg and me

Garran gave this kid his striped hat as they were rockin' out!

Me and Ollie

Love this one of Ollie

After we had rested up a bit at Millenium Park, we walked to the Marriot and met up with, Nik, a pastry chef that works there. Nik is the uncle of a little girl, Sadie, who passed away from DIPG over a year ago. We had the pleasure of meeting her dad, Zac, when he was here in Iowa on business last year. Through the wonders of facebook we decided to meet up when we were visiting Chicago. He wanted to give us the grand tour of the pastry department at the hotel and when we got there, he had such a spread of sweets, our little friend, Cullan said that he'd been waiting for this his whole life! :O) The kids got to make their own chocolate covered strawberries and we all got to sample cheesecakes, cakes, strawberries, cookies, sundaes and a chocolate creme brule that was divine! Thank you so much for putting in so much effort and taking the time out of your day to make us all feel special! It was great meeting you, Nik!

Eden's sundae creation

Ollie getting ready to hork it down!

Our crazy family with Nik. Jaren looks like Wolverine down front. :O)

On the way out of the city heading back to DeKalb

More fun with the wigs!

How we spent Sunday. Both Ayla and Finny were throwing up and pretty lethargic, having high fevers. Come to find out they both had Influenza A, lung infections and Finn also had an ear infection. Poor little stinks.

Such a fun weekend trip with friends, and meeting other families dealing with DIPG. It's comforting talking with others knowing that we aren't alone, however constantly praying for a cure so we can beat this cancer and not have to watch our children go through the things they do on a daily basis. We continue to count our blessing with Oliver and enjoy every day we have.

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