Tuesday, October 5, 2010

And so the testing goes...

So, my father in law was nice enough to accompany me down to Utah. I'll admit that I was a wreck and David thought it best to send someone with me, to which I am grateful! We drove down Sunday afternoon. What a drive, we decided to bring Maverick along for kicks, I think. We tried out a little two bedroom apartment, by little I mean little and by two bedroom I mean two bedroom, that's it! Well, it did have a kitchen and bathroom but no living room. Definitely too small for a little boy named Maverick. Anyway, that's not the point of this entry. Oakley's schedule was packed. Did I forget to mention that the radiologist called and wanted us to stay until Friday because he needed a day to review his tests and then a day to do a simulation test on Oakley?! Yep, we were now stuck down there until Friday!

Mon: 9:15 CBC
10:00 Dye injection
11:00 Sedation
12:00 Bone scan
Tues: 9:30 Sedation
10:30 MRI
Wed: 8:00 Sedation
9:00 CT
Thurs: OFF
Fri: 9:00 Sedation
9:30 Radiation simulation

Here's his schedule. Let's just see how on schedule they stayed!

Sunday Evening: Oakley ended up in the ER with a 102.5 fever. Seriously, you would have never guessed this kid had that high of a fever. We were there until after 2 AM.

Let me remind you that Oakley has to be fasting for 8 hours prior to any sedation so these next few days are going to be fun because as you know that Oakley LOVES to eat!

Monday: Came way too early...Tried to make it to Primary Children's by 9:00 for the Blood draw. Made it there by 9:10, sat around forever before they drew his blood and decided to give him a platelet transfusion. Bone scan place called in and told us they were out of dye and needed to reschedule for Thursday. That's fine as long as we get to head home Friday. If not... there will be *!#^ to pay! You don't want to mess with me! Yes, Oakley did get to eat after the blood draw but we didn't get out of clinic until around 2 PM.

Tuesday: We have to go to Riverton to get his MRI done because they're full at PCMC. Not a problem. The facility is new and they were quick to get us in. It was nice being in a hospital where there wasn't so much chaos going on. They were able to really focus on Oakley. They had nurses in there blowing bubbles and playing games with him before he went in for the procedure. Of course, he fought the sedation but got him to sleep. Then, as before, they had to give him an extra dose of sleeping something to keep him asleep long enough to do the MRI. When they brought him to me he was awake an screaming. He was a beast coming out of the sedation. It took us two hours to calm the poor kid down. He kept complaining of his head spinning and of course he doesn't understand why. I mentioned not wanting to go through this two more times and one of the nurses got right on top of things and was able to schedule the next two test for the same day, one sedation. Yeah for her, what was everyone else's problem. So now we had Wednesday off and we were headed home. Two tests down!

Wednesday: Our day off. I did laundry and we went out for Chinese. Yum. Oakley LOVED the noodles and rice. We actually had our waitress ask us if Oakley and Maverick were twins. I got a good laugh out of it, 18 months and 3 1/2 years. Big difference in years but not so much in size these days.

Thursday: Back to starving. His test wasn't scheduled until 2:30. We had to be there at 12 o'clock though because he had to drink the contrast for the Bone Scan. This had to be done 1.5 hours prior to the testing. So, we took a very hungry and grumpy boy into the hospital at 11 o'clock sharp. They were good about getting us back in a timely manner. He was given 1 hour to drink the contrast. Then another 1.5 to get the drink out of his belly, 10 minutes to be sedated and then he was off to get the CT and Bone Scan done. It sounds so much easier and quicker than it really was. Oakley was ticked that I wouldn't let him eat fat fishies. I kept telling him in a few minutes which made him more mad when those few minutes were up and I was giving him another excuse as to why he couldn't eat. The contrast and apple juice on an empty stomach made him throw up BUT, everything worked out and he was whisked off to have his final two tests done. When we finished there, we had to go back up to the clinic to visit with his doctors. Sure why not, it's already been a long day why not make it longer?! Actually, I was glad we did. We got some results:

Oakley is responding well to his treatments. The doctors seem very pleased with where he's at and after receiving only 1/3 of his chemo treatments. He still has some of the tumor in his left cheek. The outside tumor is gone but the part on the inside of his jaw bone is still present. The tumors on his spine are still present and actually he has a couple more spots present which they think are not new just weren't visible in the first round of testing. His hips and legs are showing no signs of tumors. Yeah!

Friday: We actually got called in an hour earlier than planned, Yeah! We woke up bright and early. Packed everything in the truck and headed to Huntsman's Cancer Center for one more day of sedation. Everything seemed to go well. Oakley fought the sedation, no surprise there, but they were able to get him to sleep and do the simulation fairly quickly. He came out of this sedation once again like a beast. He was not a happy camper. I was finally able to bribe him with food and he calmed down. The doctor came in and talked to me about his treatment plan. Yes, Oakley will experience side effects I wouldn't wish upon him but as I told the doctor, I'd much rather deal with the side effects in 5-10 years if it means that I get to have my baby with me in 5-10 years.

Temporary side effects: Nausea/vomiting, acid reflux, mouth sores, throat sores, diarrhea, and rashes at radiation sites

Long-term side effects: Substantial difference in facial growth - growth plate will be stopped in left side of jaw, hearing loss on left side, good chance of cataract formation in left eye, loss of salivary gland in left side which leads to drier mouth, 10% loss of kidney function to both, and a good chance of sterilization - which is also a side effect of his chemo.

I had to ask the doctor if this really was the right way to go. He assured me it was. I'm still hoping for another miracle and that the side effects, both temporary and long-term are minimal. I'm sure I've used up most of my wishes but I'm still hoping for a good out-come.

Anyway, after all was said and done, we were on the road by 11:30. Everyone survived the trip, Yeah!


  1. oh Joy you are my HERO, we need to get together! Love you guys and miss that little Oakely like crazy! I'm so happy to hear he's responding, please call me whenever, I am always ready for some joy time!

  2. What an exhausting trip! You have been so amazing through all of this! Keeping Oakley and your family in our prayers. *Hugs*!

  3. It was great to see you and Oakley yesterday. Good luck these next few weeks! We love you all.

  4. You guys are always in our prayers. Love you.

  5. Joy...I love you and your little (but growing)family! By the way...I don't think a mom with a sick baby every runs out of wishes! Keep wishing away! We are wishing too!!! ♥

  6. I check the blog regularly... since there arent any updates, I hope you all are doing ok. We pray for you guys. Thanks for letting us follow your journey.