2012

I know most people, if not all, have stopped following this blog...I don't blame any of you, I was horrible at keeping it updated. But, for any who might still stumble upon this I thought I'd throw a quick update in.

Oakley has been doing FABULOUS! He has now been in remission for 8 months. Yay! Since January of this year his activity level has just shot up! He is an incredible little guy. He loves going to preschool and gym. He says he has so many friends at school. He wants to take swimming lessons this summer.

We are still making trips to utah though they are much more sparse. Right now we're concentrating on the stricture that he has in his esophagus. This is a scarring in his lower esophagus about 5 cm long. They doctors say it is due to radiation recall. When he received one of his chemos it caused the body to react as though it were getting more radiation which caused the build up of scar tissue. We spent many months, (2x a month) driving down for esophageal dilations. They would go into his esophagus and stretch it out. We weren't getting the lasting effect we hoped for so the next step was an esophageal stent placement. This is a "continuous" stretching of the esophagus. They place a mesh wire tube (think chinese finger trap) down into the esophagus to hold it open. The first one went in last November. He had that in for 2 months and about 2 weeks after it was removed, we found ourselves back down in UT for another dilation. This dilation lasted almost 2 months. We thought we were home free...

Needless to say, we found ourselves back down in February having another stent placed. We just got back this past week from having that stent replaced. It had been placed a little too high so he was having fluid build up in his lower esophagus...it couldn't be pushed into his stomach because his esophagus wasn't able to work properly with the stent. They think that he may have aspirated several times over the course of his stent being placed in February. So, he is now on oxygen until he can maintain a high enough O2 reading to get off. If it's not one thing it's always something else! And, through all of this, he still remains upbeat. He still remembers to thank his Heavenly Father for making him feel better. What a inspiration! We'll keep him around for as long as we can! :)

The Last 14 Months in a QUICK Nutshell

Can you believe it? In some ways it doesn't seem like he's been going at this for over a year, but in the same breath, it's been such a looooong journey!

March 2010

June 2010

June 2011

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Diagnosed with Rhabdomyosarcoma June 29th, 2010

* Weighed in at a whopping 23 lbs.

* Wasn't walking, doctors said he may never walk again.

* Underwent a laminectomy (removal of tumor wrapped around his spine)

* Couldn't pee on his own, doctors said he may never pee on his own again.

* Decided to get started on a year long chemo regimen (First date of chemo July 1st, 2010)

Somewhere in the Middle:

* Many trips back and forth from Casper to Salt Lake City (6 hrs 1 way, approx. 2x a month)

* Many unexpected trips to Casper's so called hospital (don't ask), usually because of fevers

* 6 weeks of intense radiation therapy

* 2 Life Flight rides (much quicker than driving... maybe not as cost efficient)

* Enjoyed his 4 year birthday!

* Experienced many, many, many days full of ups and downs if only to lead us to...

Today: August 2011

* Weighs in at 27 lbs and climbing.

* Walks all over the place without assistance. (His walker is old news, says he had that for when he was 3; now he's 4 and doesn't need it to walk!)

* Peeing like a race horse, (couldn't resist) and has even started making it to the bathroom all on his own... when in a good mood! :)

* Learned to deal with an NG tube and esophageal stricture due to the radiation therapy

* And finally ................. drum roll, PLEASE ..............................

Finished ALL of his chemo treatments!!!! Yay!

What an amazing kid! Please keep Oakley in your prayers as we wait to do his scans next week to see where his cancer status is!

Fun-packed Summer

We've really been able to enjoy our summer this year. Oakley gets stronger as each day goes by. The last couple of months of chemo have been a little more gentle on Oakley so it's been easier for him to bounce back between treatments. He finds time to go to the basement and actually play with his toys!

Here's some of the things Oakley was able to participate in this summer:

He was able to help Dad & Grandpa with planting season this year. Oh how this boy loves his rides in the tractors. He wasn't really able to eat anything but he made sure to pack a lunch whenever he headed out. The first day out I didn't think he'd last more than an hour at most. He showed all of us and stayed for most of the day.

Enjoyed many rides in Grandpa & Uncle Andrew's Razors

Celebrated his 4th Birthday!

Oakley was miserable on his 3rd birthday. He was in a lot of pain and just didn't feel well. We had to beg him to open his presents and even then he didn't want anything to do with them after opening them. This year he was all smiles and he even took time to enjoy his toys!

He was invited to a birthday party where we learned that he really likes miniature golf. He insisted on doing everything by himself. We got an ear full if we tried helping him out in any way. It was fun seeing him enjoy hanging out like a normal kid. :)

Our TRUE Superman!

Attended the CNFR. Oakley LOVES watching the cowboys ride! :)

Actually made it camping. Oakley wasn't feeling the greatest but really enjoyed relaxing in the hammock with dad and Rowdy. He ended up with a fever by the time we got home. :(

Oakley was asked to be the ring bearer for his Uncle's wedding. He was so excited to carry the rings, he wasn't about to give the job up to his little brother! He wasn't feeling the best (had a fever by the end of the evening) so dad got to walk with him down the aisle.

Lastly, Oakley caught a fish THIS BIG!!! He was so proud of himself.

He's WALKING!!!

I know I'm SOOOO behind, sorry to all those who are trying to follow Oakley's story. I wish I could promise that I'm going to be better, but I don't want to disappoint!

Anyway... YES, HE'S WALKING and has been for the past month. I wonder how long he's been holding back! Ha ha! One day he took two steps from me to the couch, out of the blue. David and I looked at each other and then at Oakley. We asked him if he could do it again and he delivered. We were floored. We asked him to walk further and he did.

***Sorry, can't figure out how to load the clip***

It was like a new found freedom. After that he walked all over the house. It of course only lasted one night. In the past week he's just taken off with his walking. It's amazing! He's been blessed time and time again and we are so grateful for all of his progress!

He still has his ups and downs, definitely more up than down days now. When he's feeling great he loves walking everywhere he goes. He always does it with a HUGE grin on his face. We LOVE making a big deal out of his newest accomplishment. He insists on walking to and from the car and getting in and getting in and out all by himself.

He heads back to SL next week for more dilations and a day of chemo. (The beginning of a 5 day treatment. They like to give the first dose inpatient and then he can get the rest at home, it's not considered a "real" chemo!)

And so the story continues

I'm so sorry to all of you who are always looking for updates. I am a slacker and I'd like to promise that I'm going to do better but... I don't want to set you or myself up for failure. And... I'm sorry for all the rambling that will go on, it's mostly for our record.

Here's the latests updates from the past several weeks:

Oakley had a pet scan done about 3 weeks ago. The tests showed the huge mass in his cheek completely gone, as well as the masses in his spine, hips, and femurs. Yay! They did however see a little activity in his lower jaw which the doctors at this time don't see any association with his previous tumors. They're not sure what it means but they don't seem too alarmed by it. They said we'll cross that bridge when he's all done with his chemo treatments. (Secretly, we're hoping it's gone by then!) The pet scan also showed lots of activity, not related to the tumors on his spine, in his esophagus. They said that he probably still had a lot of esophagitis going on in there, probably still not healed from January...

We headed down to Utah last tuesday for a mini "family" vacation. Dave had a CE course in Heber and Oakley had a 24 hour chemo treatment scheduled for Thursday. Why not hit two birds with one stone?! We had the whole week packed with fun plans. We had meeting friends, shopping and swimming on the agenda. (Wish I had taken pics. Sorry this post really is going to be boring.)

Anyway, Oakley had started throwing everything up on that Monday. Seriously, he couldn't take a bite with out throwing it up. But as most of you know Oakley, he loves to eat and this did not stop him. He'd take a bite, throw it up, and then take another bite, followed by throwing it up and so on. Throwing up did not phase the kid. Sadly, he'd be so proud of himself when he'd finish off a chicken nugget. He'd proudly show us his plate and say, "Look, I ate it all gone!" Then, we'd look in his puke bucket where it all ended up. What we found interesting was that his feeds that were going in through his NG tube at the same time were not coming up when he was throwing up the food that went in through his mouth. When he checked in Thursday to PCMC, we brought this strange new occurrence to their attention. The doctor said it was something definitely worth looking into. Oakley's chemo was put on hold and he was scheduled for an esophogram the next morning.

Results: Oakley has a 5 cm stricture in length, midway down his esophagus. The doctors said that the stricture was so tight that if he hadn't had his feeding tube in place it probably would have closed off completely. Another blessing from having his NG tube. Anyway, they said it wasn't uncommon to see this happen but that it doesn't happen to very many patients. The doctors figured it was probably due to radiation recall. This happens when certain chemos are given to patients after they have received their radiation. The chemo causes the body to react as it did to the radiation in all the radiation spots. If that makes sense. Oakley had so many tumors on his back that during radiation his esophagus was of course affected. Anyway, the poor kid wasn't able to get anything past the stricture so he had to throw it up to clear the block. Glad we found the problem and didn't just chalk it up to being esophagitis.

Now to fix the problem: Oakley has to go into surgery every 3 weeks to have his esophagus "stretched". Because it's a tender spot, they can only stretch it about 2 sizes bigger each time. His first dilation left his esophagus at a 7. They said they'll aim for his esophagus to be between 16 and 20. You do the math, we've got several more trips to SL to go. Once his esophagus is where it needs to be, it'll probably be another 2-3 years of maintenance. As always, he's been such a trooper though all of this. He takes each new challenge as just that... a new challenge! I could really learn a thing or two from this guy. We never hear him complain... well, maybe when they make his fast before procedures and they deny him 'hard foods'. He's on a mechanical soft diet right now, until his esophagus is at an 8 or 9. You try telling Oakley he can't have chips, french fries, chicken nuggets, and so on! Shhh, don't tell... we don't deny him anything he wants! :)

There went our family vacation... we actually were still able to get together with a couple of friends for which we were very grateful for the distractions!

On a much lighter note: Oakley is doing awesome, feeling awesome... and still trying to eat! Ha ha.

He's getting stronger each day. We love watching him interact with his siblings. Harley and Maverick love the attention they get from him.

He's still gets worn out easily after his treatments but he bounces back so much quicker. He's trying to walk more and more. We're hopeful that maybe by this summer he'll be walking a little on his own. He LOVES trying to balance and walk holding just one of our hands. He's such a champ! :)

Oakley is my hero and I love him more and more each day!

St. Baldricks

This year David has gotten involved with the St. Baldrick's Foundation: a volunteer foundation that funds research to find cures for child-hood cancers. David admits that his main drive for getting involved is mostly due to what our sweet Oakley is going through. These volunteers look for donations and then in turn shave their heads to look like so many of the cancer patients.

March 2010 - Full Head of Hair

July 2010 - Losing it quickly

December 2010 - Bald is Beautiful

David, along with his teammates, the Nude Noggins will shave their heads March 19, 2010 at the end of the fundraiser. If you're interested in learning more about this foundation, check out David's website:

http://www.stbaldricks.org/participants/mypage/participantid/428944

It's great seeing how many people want to be involved in such a great cause!

A New Year...same old stuff!

Oakley is finally starting to feel like his same old self...prior to radiation. I think that the radiation really took a toll on his little body.

In the month of January:

Oakley got to help dad celebrate his birthday!

As mentioned earlier, Oakley is FINALLY started feeling good enough to actually play. He's found a new love for video games. He asks to play the xbox at the hospital all the time now. It's hard finding games that he can actually figure out and play though. At home he loves playing the original nintendo and the nintendo 64. Our family can handle these kind of old school video games! :)

Oakley also enjoys playing Hullabaloo! Such a fun kids game. He 'jumped' off the couch when we got the game. The kiddos had so much fun playing and probably would have played all night long if Harley didn't have school in the mornings. When Oakley got tired of crawling around, he made dad carry him from shape to shape. What a FUN family night!

Ready for bed.

Oakley's new thing... okay really he can't make up his mind about a lot of things these day so every day is almost a new day of things he likes or dislikes, things he wants or doesn't want and so on.

Anyway, here are a few of his 'new' facts for January:

He likes his video games... Excite Bike

He likes going to bed in his clothes.

He's starting to be able to eat and keep down more of his food.

He still loves his hot pretzels & hot cheetos.

Hot dogs are yummy one bite and the next taste yucky... this trend follows much of his eating habits since radiation.

Oakley has got a few more months of traveling back and forth to Utah and then FINALLY his trips to Salt Lake will slow down and he'll be able to receive more of his treatments here in Casper. Yeah for all of us! :)

Thanks to all of you who have cared so much for our little Oakley and wanted to follow his journey. I will TRY to keep a better log of his activities!