Friday, October 22, 2010

From Ollie...

"Well, my mom saved a kitten. We named it Max, but we call it Maxi for some reason.

I got to shoot a bow and arrow at an archery range with my Uncle Bryan. I shot a bow and arrow, but the arrow tip broke off and after that I shot a bullseye! I said the tip should be on there otherwise it would stick, but it didn't. I went to my friend's house. His name is Tyler Jolley. I have a Wii my friend has a Wii, too so I just brought the whole box of CD's to play. We played Hulk, WipeOut and Smackdown vs. Raw Wrestling. They thought it was cool. I had fun. And we played air-hockey. Jake, my friend's younger brother, he's 4, he beat me because I'm not very good at sports. I'm going to my other friends house, his name is Takoda. Two days before Halloween, I am going to his Halloween party. He will be a ninja with a spike on the front of his head. I will be Yoda, from Star Wars.

My younger brother is going to Iowa City to talk to a GI doctor down there. He has something wrong with his throat (Eosinophilic Esophagitis). I got almost twenty sheets of homework because I'm not in school. I am going to a fight."

Dictated to me by Oliver

Wednesday, October 20, 2010


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!!!

Monday, October 11, 2010

9 month MRI - September 29th, 2010

Today Oliver had his nine month post diagnosis MRI down in Iowa City. This was a difficult one for me because nine months ago we were told he had 9 - 12 months left to live. We don't know exactly what the future holds or how things will eventually unfold and so this MRI was particularly nerve racking for me. Ed and I thought that it could possibly be growing because he was starting to complain of nausea every once in a while again and his eye was turning further and further inward. I was surprised to find out that there was no new growth and that it may have even shrunk a bit!!! What WONDERFUL news! This news means more time with Oliver -- more memories to make! Thank you, seriously, thank you for your prayers and your genuine concern for our family. It makes all the difference!

Thank you to Mike, the MRI Tech, for giving Oliver an early Halloween treat! Usually during Oliver's radiation treatments they had candy for him to choose from afterwards, but they all had nuts so he couldn't eat them (he's allergic). Mike was so kind to remember this and made up for it by stocking a trick-or-treat pumpkin with skittles and starburst... two of his favorites! It's the little things... seriously...