Monday, April 11, 2011

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!


  1. Joy, Oakley and your entire family are so inspiring to me! I cannot believe your positive outlook through it all. I hope these next few weeks fly by and Oakley gets through it like a champ. Hope you are all doing well!

  2. Joy and David! I agree that we ALL can learn a thing or two from Oakley! What a strong little guy. I love your updates and wonder about how he is and pray for him often. He sounds like such a trooper and that things are looking up! Thank you for sharing his story...very inspiring :)

  3. Oakley you are definitely our little hero as well! You are such a handsome, loving, and strong little boy. We are thankful for all you've taught us and so many other people as well. You have a special purpose here, and we're thankful we have been able to experience a small part of your life. You have the best parents, especially your sweet mom! You are one lucky guy to have her, she is the BEST! Miss you guys so much and I'm so bummed we didn't get to see you. I would've LOVED it! Maybe in the next few months if we come up again. Hang in there you guys, and know you are in our prayers.

  4. What an amazing family you have. I am glad that you still take time to have fun in all the craziness. Way to go Oakley! You rock.

  5. so excited to hear good news (not as excited about the esophagus, but overall things sound great)!!! Oakley is truly amazing - someone told me once that the choicest spirits volunteer to come to Earth in imperfect bodies, and I know that is true in O's case - he obviously has quite a spirit to make it through this trial. you are just as amazing, Joy. I admire so much how you have handled all of this. all our love from Indiana!

  6. You are all hero's... I am amazed by you and you are always in our prayers. Thank you for the update.

  7. Thanks for the update. So glad to hear Oakley's getting stronger. It's amazing to see. We love you guys =)

  8. How is it going? It was so fun to see you! Please call us when you come through again! This time we will feed you!