Tuesday, October 26, 2010

Still going strong...

Typical morning:

Wake up @ 6:50. Mom gets ready. Yes, I'm lazy and don't want to get up in the mornings. 7 AM wake Oakley up by changing his clothes. He asks "are we going to the building hospital?" (Seriously, he asks this question EVERY morning.) Out the door by 7:05 ish. Drop the truck off with the awesome valet men to park the monster. Oh how I hate parking Dave's truck. Head straight to Oakley's designated room and wait patiently for the anesthesiologists to come get Oakley. We head back to the radiation room anywhere between 7:30 and 7:45. Oakley hands them his "tubie" so they can give him his "milk" (sedation medicine) and he's off for a quick sleep. Usually with no problems...though, I did have an anesthesiologist come in a few days ago and ask me if Oakley had a cold or anything like that. I told him nothing I really considered a cold or new symptom. He said he was curious because my son had just stopped breathing on the table and he had to go and breath for him for a full minute before Oakley started breathing on his own. What a scary thought for a mother...but I have full confidence in them that they will take care of my baby while he's on their table. Seriously, what an amazing team here at the Huntsman's Cancer center. They always assure me that they will take good care of my Oakley while he's in their care. I put my total faith in them each morning that I leave my son with them.

Anyway, they put him on a metal table where they place a special mask made to fit him perfectly over his face to hold his head in the same position each time and then fire those radiation beams... really I don't know what all they do and how they do it because as soon as he's out, I leave the procedure room and head back to his room. They usually bring him back to me 45 minutes later. If they bring him to me asleep, we have a better morning because he can come to on his own. If they wake him up before bringing him back to me, it's going to be a looooong morning. He's not too happy when this happens so we try avoiding it as much as possible. Certain anesthesiologists are better at bringing him back to me asleep.

We have to wait around for 30 mins after they bring him back to make sure his vitals are stable and then we head home. So far Oakley has handled the radiation rather well so we usually run an errand, just to get out and about and then head home for a quiet afternoon. Oakley is usually ready for a nap by then.

Sunday, October 17, 2010

First Week of Radiation.

Nothing to report this week really. As usual, Oakley was a champ. He took the first week rather well and I think we have his sedation routine finally figured out. (This was a necessity otherwise I was going to kill him before he even got to week 2 of radiation!) I know, I'm supposed to have patience with the little guy but I can only handle so much yelling, hitting, and crying a day. If he uses it all up in the morning after radiation, what does he have left for the rest of the day?! Ha ha!

Anyway, we've settled rather well into our new home away from home for the next 6 weeks. I wish I had gotten pictures of our apartment, more for memories, but I didn't. It's a small one bedroom apartment with a queen and single bed in the bedroom. Yep, I get my own bed and Oakley gets his own bed. The front room is the perfect size for the two of us... a little crowded for a family of five.

Thursday, October 14, 2010

What did Oakley wish for?

I've been waiting to be home long enough to add pictures to the words...haven't made it yet but decided I'd better publish all my posts so you guys don't keep wondering how my little Oakley is doing. Eventually I hope to add pictures. Until then...

A playground with 3 green slides.

I didn't think Oakley's wish was necessarily reasonable (3 slides), let alone possible BUT Make a Wish can do anything! They found the perfect playground with 3 green slides. We can't begin to thank the Make-a-Wish team enough for all that they did for our sweet Oakley... as well as the rest of the kiddos. We got to know the coordinator for the foundation (Dana), an awesome contractor (Doug), and the most kind and selfless wish grantors ever (Steve & Deb).

I don't now if you guys know how the Make-a-Wish thing works but I'll share a little with you. Each year, many children that have been diagnosed with a life-threatening condition are given the opportunity to make a wish. Then the wonderful people, most of which I understand are volunteers, help make these sweet kid's wishes come true.

In Oakley's case, 3 green slides could not be granted by a wave of his grantors wands. Nope, they had to get dirty. They went right to work on assembling Oakley's playground.

This was a fun project that the whole family was able to help with.

They were so kind in allowing Harley & Maverick the opportunity to "help" and Oakley got to sit along the sidelines overseeing theproject. :) Nothing much was said from his end so hemust have been pleased with what was going on.

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!

Saturday, October 2, 2010

It's supposed to be our week off!


So, I got a call telling us that they needed us to take a trip back to UT this weekend for 3 days of testing. They didn't think it was a big deal to have me drive down Thursday afternoon for testing Friday, Monday, & Tuesday. Seriously?! I called David in tears, (my hormones are really kicking in now), he said to tell them not until Monday. Yep, the frustrating thing was that we tried telling them when we were down in Utah the last week that the Doctors had wanted to do the testing then and they told us not to worry about it, they were scheduled for the week we returned for radiation. Anyway, because he needs to be sedated for each test and they'll only sedate him once a day, it was going to take 3 days of testing. NOT what I wanted to do when we were supposed to be enjoying our couple of weeks off!