Ollie's MRI Results - December

Wednesday, December 15, 2010

Today's MRI was particularly nerve racking for me because I've seen an increase in symptoms the past week and a half. His double vision has never gone away and so we are used to seeing him wear his eye patch on a daily basis. It's his 'new normal'. He looks like he is getting weaker on the left side of his body again. I noticed as he was walking up some stairs that he was having more trouble lifting his left foot up on the stair. I have also noticed that at times, not often, that he'll be talking or laughing and a spit globule will fly out and just hang out on his lip, like a string of spit. We usually laugh about it while he quickly wipes it away, but I know that drooling can also be a sign of them forgetting how to swallow. So... with that being said -- symptoms reappearing -- as well as us coming upon his year diagnosis anniversary, December 23, 2009, I was trying to prepare for the bad news that there was progression (tumor starting to grow again).

We drove an hour and a half down to Iowa City and he had his MRI first. Then we went to the Radiology Department to see his doctor and speak with him about what he saw on the scan. He came in and said that there was no indication of progression, that it looked the same as his last scan in September! I was AMAZED for a few minutes and then back to the thoughts of 'how long will this luck last'? 'Why are his symptoms reappearing?' He'll be having his next MRI on March 2, along with a Pediatric Swallow Study to see how his throat and everything are working. (Jaren had one when we were figuring out why he hardly eats.) IF his symptoms really get a lot worse, then we need to call the doctor and let him know. IF and WHEN he starts to progress, then we talked about possibly reirradiation at a lower dose than his first round. From the DIPG support group there have been several kids that have been reirradiated and are enjoying a second honeymoon period, free from symptoms that hinder normal activity.

We were very excited that our doctor feels like this is something that he can do. We know that it is not a cure, but it will allow us more time to spend with him, if that is Heavenly Father's will. It is ALL up to Him... We are counting our blessings and realizing how important our loved ones are and continually acknowledging the Lord's hand in it ALL...

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)

Spring Conferences & World Fair

Thursday, April 8, 2010 - Edison Elementary

Tonight Oliver and Eden had their school conferences and again we were very pleased with what their teachers had to say about our kiddos! They said they are both model students especially in the Character Counts aspects and they do great work and are constantly trying to do well in school.

We met with Oliver's teacher, Mr. Galloway and counselor, Ms. Hay to talk with them since Ollie hasn't been back to school for several weeks. We don't think he will be back because of his weakness. Ed had to carry him up the stairs just to go to the conference! Since the school is a two story building it isn't equipped for a wheelchair... unfortunately. I know that everyone would do everything in their power to try and allow him to feel comfortable there, but it's just not possible... plus... I like having him home with me. Anyways, since the kids did great we celebrated with some Dairy Queen! YUM!

Saturday, April 10, 2010 - Samara's Birthday

Today we went to Takoda's sister's birthday party at Chuck E. Cheese and then Pizza Hut for pizza. She is such a doll!

Oliver, Eden, Jaren and Phineas at Chuck E. Cheese.

Takoda and Ollie at Pizza Hut (Samara is behind Takoda)

Jare doing the 'birdie'!

Finny boy

Eden and Oliver at the World Fair in Waterloo. A former classmate of mine formed 'Over the Rainbow', a non-profit organization that brings health and education to the people throughout struggling countries. Once a year, usually in the spring, they host the World Fair at the Pepsi Pavillion on the National Cattle Congress grounds. There's food, activities, booths and entertainment for the whole family. We found out about it last year and we really enjoy going. It's fun and it's for a great cause!

Eden and Angela, a childhood friend of mine. I helped her apply temporary tattoos and face paint on the children there! So fun!

Capoeira Club that Ollie was once a part of. A year ago he was playing with these same guys at the World Fair.

It was rough seeing Oliver not be able to participate in something that he once loved. He's so weak that he can't physically do the same things any longer. Heartbreaking to see.