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!!

Emotions

We have been blessed with how well Oliver is doing. He is able to run and play, wrestle with his brother, even dance with his light saber! He's able to use his left hand again and throw and write. Every day is a gift. It truly is. When your child is diagnosed with cancer you are immediately part of a larger family. We have had the opportunity to meet a few others who have children who have passed and children who are now battling for their lives. Shortly after Ed and I received Ollie's diagnosis we searched out support groups and found a DIPG support group online. Since then I have read through countless blogs and looked through many pictures of other children and families affected by this horrific disease. We are scattered all over the country... all over the world, but we are brought together by our children, by our need for information, support and prayers. It makes me sick to know that so many young kids are struggling so much. I just cry at my computer seeing the blogs or the emails that say another child has passed or is very near to it. I know that it is all part of the plan, but I just can't help the hurt and pain that I feel. Please keep the families that are dealing with this disease in your prayers. No parent should be told that their child has cancer, especially one that is so devastating with such a poor prognosis. Life is... well... life just is... some days. I never know what mood I will be in on any given day. I'm happy, I'm sad, I'm jealous, I'm angry, I'm frustrated, I'm blessed, I'm hopeful, I'm helpless... it comes... and it goes... I'm sure I'm just a delight to be around! I've learned a lot about the grieving process and it doesn't just begin at death. I've been grieving ever since Ollie was diagnosed. I feel like my heart was broken into a million different pieces and each time I hear of another child being diagnosed it's like one of those pieces is shattered all over again. I know the pain of hearing the news for the first time. Being a zombie for the next few days while you are trying to let the reality of it all sink in. Breaking out in crying fits and trying to keep it together in front of the kids. Some days I just want to scream!!! I want to scream for all of the mothers out there who have visions of the future flying through their heads and wondering if these dreams will ever be realized. I know the questions that are asked out of the blue and the shocked looks that I give back with nothing to say. HOW do I explain things in a way that they will understand... that won't be too scary or confusing. I want to be honest... I want to protect them... I HAVE to protect them. Ahhh.... another day is done. Time to go to bed and lay there wide eyed for several hours, thoughts rushing in and out. Tossing and turning... I am honest in this blog. Some people may not like it, but it is what I feel, when I feel it. I would want to know that I am not alone in the feelings that I'm feeling. All too often people don't share their feelings... their TRUE feelings because they are scared of what people will think. They think that they are weak or less of a person because they may seem out of control. Well... sometimes you have to lose control so that you can find it again. Anyways... this is MY blog, but it's for EVERYONE. Not for those to judge and criticize, but for those that are looking for courage to be honest and of course to find out about our special family and Ollie. We are grateful for all of your continued prayers for us all. THANK YOU!!!

Disconnected...

I can't sleep. My mind just keeps racing. I have a sick feeling in my stomach every time I think about what is happening in my life right now. It's frustrating when it feels like no one cares, even friends who you thought would be there and now are nowhere to be found. I know life doesn't stop for others just because of what I'm going through, but it would be nice to feel like people cared. It's like I've fallen off the face of the planet.

I feel like I'm drowning and people are just standing on the shore watching me struggle. Most days I can keep myself busy and try not to think about how I'm truly feeling, but when the day ends and I can't seem to fall asleep that is when the thoughts creep in. I find that I'm becoming more hard-hearted toward people and I don't want to be. I wish that life could just go back to the way it was. I had my few close friends that I could stop by unannounced and chat for hours or go out with to unwind when life was getting to be stressful. I want my comfort zone back. I want my fun friends back. I want to hang out again and laugh and forget about the days problems. Yes, I can talk about things with my counselor, but it's just not the same as hanging out with a close friend.

I just feel so disconnected from the outside world. I used to go out for girl's nights all the time and hang out, but now I feel like a hermit being home every single day. I'm being pulled in so many directions and trying to fill everyone else's needs that mine are never being met. I have no time for myself which is starting to wear me down.

Braves Baseball - Game 3 - Ollie's final game

"OLLIE'S ALL-STARS"

This was Oliver's third and final game. He just felt like he couldn't play well anymore. I was SO PROUD of him for getting out there and trying. It's not easy to go out and play when you can't throw with your dominant hand, still stumble a bit when you run, are weaker on one side and can only see from one eye. HE DID GREAT!!! WE LOVE YOU, BUD!!!!

Ollie's fans!!!

#3 - Oliver

Oliver and Doug, one of his coaches!

Loved seeing so many "8's"! :O)

Eden, Natalie and Rachel

Ollie up to bat.

Oliver sliding into home plate. AWESOME!!!

Always bringin' up the rear! Oliver - #3

He looks so tired here...

Ollie, Uncle Danny, Aunt Jamie and cousin, Carson.

Cousin Natalie, Ollie, Uncle Jared and cousin, Aubrey.

Again... we were so proud of Oliver for playing this season, even if it was only three games. I know that he felt like he was letting his team down because of his decreased abilities, but I know that it was an inspiration to MANY people to see him play despite his weaknesses. I know that I am in AWE of him in so many ways... this was just one of those times! :O)