Chicago

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.

Eden

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!

Eden

Finny and Jaren with Daddy

Jaren and Ollie

Bear

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.

Old Chicago Fundraiser

Friday, March 4, 2011

Today Oliver had his fundraiser at Old Chicago in Coralville, about an hour and a half away. Lindsay, the general manager, had contacted me about a doing a fundraiser for Oliver with 10% of the proceeds going to Ollie as well as the money from a raffle. Thank you to everyone who made it possible! For all those that helped with creating the flier, handing out fliers, buying raffle tickets, showing up to eat and give donations. I was seriously in awe. I know I repeat that in many posts, but it's true. This year has been difficult, but I have been pulled from my loneliness and despair by the kindness of strangers. Woody, who helped organize many of these events, talking with Lindsay about Oliver and doing this for him... it's amazing. I just don't know what else to say, but thank you.

The fliers and poster that was up at Old Chicago.

We got there around dinner time and shortly after ordering our meals Lindsay came to our table with a handful of gifts for each of the kids! How sweet was that? Eden got some nail polish, hair stuff, silly bands and lip gloss. Jaren got some matchbox cars and other stuff in a small basket. Ollie got some Iowa Hawkeye wristbands, mini skateboards and some other Hawkeye stuff and Finny got a little puppy dog and a light up octopus that the kids took turns scaring him with! He is so funny... he's scared of whoopie cushions, too!

Glamour Girl

Ollie and Finny

Jaren and the scary octopus sucking his face off!

Ollie with Finny, who is yapping about something!

Bear and the loves of his life... cars.

Finn doesn't know what to think of the octopus.

Ollie loves the mozzarella sticks... and they are delish!

Woody, Kim and Ollie

Woody showing Ollie some pool tips.

Love this picture!

We were excited to meet up with some of our friends we met at Dance Marathon! It meant a lot that they would come and support Oliver on a Friday night! Kathryn had just braided Eden's hair and Eden is now painting Heather's nails! Can someone say... Salon day?!

Finny dancing on the table! Heather had given him her phone to listen to some music and he was bustin' a move all over the place! :O)

More of our DM friends came for some fun! Heather, Katelyn, Kelsey, Eden and Kathryn. I think Eden was in heaven with all the girlie time! Thanks, ladies!

Heather teaching Finn how to bump fists!

They had a raffle and when Oliver came into the bar area to draw the winner everyone started clapping and cheering. I wonder if he's used to all the attention yet?! He was loving it, I'm sure!

And the winner is.... this guy who said he was the last one to put his name in the raffle! He told me that his daughter had a stroke at the age of 8 and was at the hospital down there. She's now 10. I wish I had more time to talk with him, but the kiddos were getting restless after being there for 3 hours! :O)

The crazy lot of us! :O)

Lindsay and Ollie. I LOVE this one! THANK YOU SO MUCH and GOOD LUCK in the Quad Cities, Lindsay!

Grandma and our 'luggage'!!

Oliver's MRI and Pediatric Swallow Study

Tuesday, March 1, 2011

Today we traveled down to Iowa City for Oliver's MRI and swallow study bright and early the next morning. We didn't get out of Waterloo until around 3:30 pm and we wanted to stop by Williamsburg at the outlet mall to do a little shopping. The boys fell asleep like this on the way down.




We met up with Kathryn, a student we met at Dance Marathon in February, at Texas Roadhouse for dinner. We had fun getting a chance to get to know her a little better and had lots of laughs! We had hoped to get in contact with some other gals this trip, but I had lost my paper with their numbers written down and we ended up not having as much time as I thought we would to visit since Ed had to hurry home for work. Lots of appointments make for a loooooong day at the hospital.

Kathryn and Eden

Eden, Kathryn, Jaren, Oliver

Oliver blowing some spit wads through a straw outside!

Wednesday, March 2, 2011

Oliver had his MRI first thing in the morning. Ed usually goes into the MRI room with him, but this time I did. I am amazed to see how calm he is when he gets the IV contrast (shot) and then lays there with his head cradled in the head rest and is moved into the tube for nearly 30 minutes. At 9 years old, I would be terrified of all the different noises it makes. I could stay in there with him, but I had to wear ear plugs because of how loud the machine is. He's never had to be sedated for testing which amazes me. While I was sitting there I was thinking of how brave he really is. He amazes me.


After the MRI, we went down to Pediatric Radiology for some more testing. A few weeks back Oliver was choking at least once a day, every day for about 2 weeks. Knowing that this was a sign of the tumor starting to grow, it made me horribly nervous. At his last checkup we went ahead and scheduled a pediatric swallow study to make sure everything was working correctly. Jaren had this done in the summer of 2009 so I knew what to expect this time. There were about 5 cups of barium of varying thicknesses for Oliver to swallow. They had mixed the barium with some raspberry Crystal Light to help with the flavor. Starting with the thinnest mixture they fed him and took pictures of him swallowing to make sure that everything went down the way it should and continued on until he ate some cracker mixture. I stood outside the room, but could see him through the window as well as on the screen. I'll have to see if we can get a copy of the recording of him swallowing. Immediately following the procedure the doctor had said everything looked great. Good news!

This is not Oliver... but gives you an idea of what we saw on the screen. It is a close up of the side of the throat area.

After the swallow study, we went down to the radiology department in the basement of the hospital for Ollie's appointment with Dr. Buatti, his radiation doctor. Each time he comes in he gets his weight and blood pressure taken.

Ollie and Eden squeezing into the chair together.

Jaren and his alien gun he used to zap Dr. Buatti with.

Crazy Ollie

I never know what to expect on MRI days. I always get so nervous for what we will hear. We were surprised to find out that there was no new growth and that the tumor remained stable, for now. Although this is a wonderful blessing I can't help but wait for the other shoe to fall. I know I shouldn't dwell on it, but I can't help but wonder when his health will start to decline, when we will hear that the tumor is progressing.

Once you enter the world of cancer there is no relaxing. Yes, we take every day as it comes and view it as a blessing. We try to make the most out of our situation and make as many memories as we can, but the fact remains... his cancer is still there. It has always been there. It is just sitting there... lurking. It just makes me sick thinking about it. The cancer is waiting. We are waiting. I still can't believe this is my life. I can't believe that my child has cancer and will most likely pass from this. We were changed on December 23, 2009. Life as we knew it was over and a new life with cancer was beginning. We will never, ever be the same.

It's hard to explain all the feelings that I feel, impossible really. So... off we go again until his next MRI in June. Will he make it until then? This is the first thing I think of when we schedule his follow up appointments. Sick... I know, but realistic. I know far too many kids that have passed in a short amount of time. It's heart breaking... heart wrenching. Sorry... my mind is not a happy place to be at times, but it is what it is.

After the appointments we all headed to Old Chicago for lunch before heading back to town. Lindsay, the general manager, had contacted us about holding a fundraiser for Oliver down there. She and many employees and patrons sent Oliver over 100 Christmas cards last year. It is quite amazing what kindness we've received from complete strangers this past year. We saw fliers on the walls and a huge poster that I had Ollie stand next to. He said he wanted to do his cheesy smile like the photo on the poster! What a nut! We headed home Wednesday and will be down again Friday for the benefit. We can't wait!!

Loss of pets and humans... no comparison

My friend posted a status on facebook (aka: the relationship destroyer) about how she didn't think the loss of a pet was as heart wrenching as other people feel it is. People were all up in arms over this. I know my friend to be a wonderful and loving person and a truly and bluntly honest person, which is quite refreshing actually. Too many people live behind a mask of how society thinks they 'should' act and feel and it's nice to see some real emotion. Anyways, it makes me wonder how many people know the story behind her comment. She's coming from a place of grief when as a 12 year old girl, her 3 year old brother was struck by a ball bearing from a semi that came barreling through the windshield. It was violent, it was graphic and horribly painful to hear her relate this story to me a few months ago. My heart ACHED for her and her family to have to live through that experience and then all the rest of the days of her life.

Knowing this, I can see where she was coming from. She has lived through the loss of a human being. She has witnessed this loss first hand in such a horrific manner. It is not the same as watching an animal have an illness. It is not the same as watching an animal die, even if that pet is a beloved pet that you've had for many years. There is no doubt that people can have wonderful connections with their pets and can feel the love from them. It is not the same as a human relationship. It is not the same. There is NO COMPARISON.

After Oliver's diagnosis, I was alone in the car coming home from a night out and was listening to a radio show that I often listened to. They were talking about how people spend thousands and thousands of dollars to save their dogs lives from any number of illnesses. It made me ill. It made me sick to think that people think more of animals than they do of humans. My son was just given a death sentence and people are spending their money on research to save an animal. AN ANIMAL!!!

I've had several pets that have survived for several years. My childhood cat, Mickey, was around longer than I was and we had to put him down when he was 18. It was difficult. It was sad. It doesn't compare.

My mom just had to put my cat, Alley, down that a friend had given me for my 16th birthday. She told me that she went in and the doctor gave her a shot and within 15 seconds she was gone. Sad, but it doesn't compare.

Talking to other families that have lost their children, not just to cancer, but other accidents, has made me more aware. Having been given Oliver's diagnosis and grieving this past year for what is most likely going to happen to him has been horrible. Families have recounted their children's passing. Some watching their child deteriorate and lose vital functioning over time, such as the ability to walk, use their hands, talk and eventually breath. Children dying in their parents arms while gasping for breath. Parents not being able to do a thing about it. Cleaning up after their child has passed away, watching blood come out of their eyes. People... it does not compare to the loss of an animal.

I'm not saying don't love your pets. I'm not saying don't be sad over the loss of a pet. I am saying, don't compare the loss of a pet to the loss of a human being. Don't say, "I know how you feel" or "My dog was just diagnosed with cancer, I know how you feel", because you don't know. You have no idea. I know people don't know what to say so I'm enlightening you... don't compare your beloved pets loss to the loss of a person unless you want to injure and insult the person who is grieving.

People that 'don't get it' don't realize that they don't get it. I truly didn't get it until after Oliver was diagnosed. I didn't understand how hurtful things could be until they were said to me or about me. If you don't know what to say, keep your mouth shut and give that person a hug. Don't trivialize their grief by comparing it to the death of an animal. If anything, if will hurt that person more and create a wall between you. Just sayin'...