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'...

'Little Mr. Awesome'

The other day Ollie and I were watching a show called 'Little Miss Perfect' about little girls' beauty pageants. I know... I know... seriously nothing was on and I could not look away! It drew me in! The following conversation ensued.

"Mom, those girls are trying to look beautiful, but they are beautiful just the way they are."

"Good answer!"

When they crowned the winner and announced that they received a $1,000 check, Ollie's eyes lit up and he said, "MAN!!! Is there a 'Little Mr. Awesome' contest!?!"

Old Chicago Fundraiser in Coralville

The Old Chicago down in Coralville sent almost 100 Christmas cards to Oliver after they heard my request for cards to help make Ollie's Christmas extra special this past year. We had never met any of these kind people and yet they've done so much for Oliver. Through Woody, a parent of a child that is a cancer survivor and has gotten to know these people, they learned about Oliver and wanted to help make his Christmas one of the most memorable ones of his life! And... they did!

I received a card from the general manager down there and she asked if they could do a fundraiser for Ollie with 10% of the days totals going to Oliver for medical expenses, thanks to the new year and deductible, as well as other needs we may be facing this year. Not many people realize that we only have $2,000 of life insurance on each of our children since we were living paycheck to paycheck. No one ever thinks that it will be their child, but it was... it is our child. Coming to terms with Ollie's illness and the reality that a funeral costs from $8,000 - $10,000 and now realizing that $2,000 isn't going to cover much. It makes ya sick just thinking about a child dying. I can't count the number of times my mind wanders to such things.

So... we hope to see you down there! :O) We'll most likely be down there for dinner!

Eden and Oliver

Ollie

Ollie loves mozzarella sticks!

Say, 'cheeeeeeeesy'!

Oliver loved playing pool!

Jaren, age 3 1/2, barely seeing over the edge of the table!