Monday, November 8, 2010

Children's Western Wish Foundation

Oakley was chosen to be honored at the rodeo here in Casper by Children's Western Wish Foundation. These kind people provided Oakley will all his own cowboy clothing; from a sharp cowboy hat down to some great looking boots. Complete with an awesome belt buckle, chaps and rope. Boy did he get spoiled. We were all jealous. Everyone loves a good rodeo so most of the extended family came for the event.

Oakley has been pretty worn out from all the radiation so we were a little worried about how he'd handle being out and about. He LOVED the rodeo. We were able to go right down on the grounds, front row to the bull riders. Oakley hung over the railings in awe. Of course, the very first ride ended with the rider getting hung up and beat up. I thought we were a little too close for that particular showing but it didn't get discourage Oakley at all (only incident we were witness to). He made it through a couple rides, team roping and then was ready to go.

Along with the rodeo hype, Oakley welcomed a new baby brother the week before. To say Oakley wasn't thrilled would be an understatement.

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!

Wednesday, September 22, 2010

Quick trip to the Farm

Oakley's treatment was once again pushed back but we didn't let this get us down. Nope, we took advantage of his counts being GREAT and headed to the farm. We took off Friday afternoon after David's work. He put in a good day of work on Saturday. Church on Sunday. More farming on Monday. Blood was drawn Tuesday morning and we took off for Utah Tuesday afternoon. It was a quick but very enjoyable trip.

Oakley LOVES the farm and even more, riding in the combine. He's always asking to go to the farmhouse so we were glad that it worked out so well that we got to stop at the farm on our way to Utah.

Riding in the tractor with Dad

Driving the Combine with Grandpa!

I think Oakley has Grandpa wrapped around his finger. Whatever he wanted Grandpa gave him. Oakley wanted to jump, Grandpa jumped. (I was grateful Grandpa was willing, I wasn't!)

Just liked this picture. He was all tuckered out from playing outside. He was lucky that his Uncles didn't mind taking him out to look at the cows or jump on the tramp whenever he wanted to.

Oakley has also been blessed to have such a sweet and talented Great Grandma around. She sewed a quilt and put it up for auction in Oakley's name. The quilt was gorgeous and the fundraiser did awesome. We were lucky and got to be there when they held the drawing. Oakley of course, didn't want to cooperate, (I think he was a little worn out from riding in the tractors). Harley helped out and drew the name. Thanks again Grandma for all your hard work in making the blanket!

Once again the whole family got to tag along for the the tractor and hanging out in the hospital. What a bunch of Gallup troopers we have! :) We truly enjoy the time we get to be together!

Wednesday, September 15, 2010

Platelets, & another fever

Actually this week started out just needing a platelet transfusion... with a slight fever we were watching. Again, I ended up having to take him into the hospital, waiting for an hour to have a type and cross drawn for his platelet transfusion, only to be told we didn't need to come in for that and to go home until the platelets arrived. Yes, I was fuming again! One day they will get this all figured out and by then, we won't need them! Ha ha!

We did get to go home for the night however and didn't have to be back until the next afternoon. Oakley did great, I think it was because he didn't have to be accessed again, already had that done from the day before. He still had that slight fever that he didn't want to let go of so I told the nurse we'd probably end up back if his fever didn't break.

Yep, a trip back to Wyoming Medical Center that evening. His fever started creeping up and I felt that I had already waited too long to take him in. What a pain. We know what has to be done but there's always a protocol to follow. We sit in the ER for what seems like FOREVER, they tell us his counts are low and we're moved upstairs. Oakley still doesn't care for this hospital. He completely shuts down. Actually I think he's kind of fond of one nurse, he doesn't mind letting her take care of him. Anyway, after a dose of an antibiotic and a dose of tylenol, his fever of course dropped (literally in an hour) but now we're stuck there for the 48 hours required.

Luckily my parents had come out for a visit so we had someone to watch the kids. I know I've said it a million times but Thank You so much to everyone who has been so willing to take care and raise my other two kids while I've been busy with Oakley. I feel that a thank you isn't enough and I will repay all of you someday!

Sorry I don't have any pictures again, I'm limited with my resources since I'm not at home and don't have full access to the picture library. I'll update later with pictures.

Thursday, September 9, 2010

Week 11

This trip we got to bring the whole family with us. It really worked out quite well. It was Labor Day weekend so David had a 3 day weekend. This was Oakley's 3 day treatment so David would only have to take off one day for traveling. Yeah!

Oakley was pretty upset that we weren't going to get to go stay at Aunt Debbie and Uncle Carl's house this time around, they were sick. We had to do some serious convincing and bribing, but we got him calm and convinced that staying in a hotel would be fun. We headed down Friday night after David got off work. We wanted to take Oakley swimming since his counts were so high and he was feeling great! The pool was awesome. It was warm water which Oakley took to rather quickly. Did I mention how much he loves the water too? Probably his second love to being outdoors. Anyway, when he finally got cold & tired of the normal pool, we were able to move to the hot tub which was the perfect hot tub temperature. It was also huge enough to accommodate Oakley's floater and the other two kids with their life jackets. I think they all would have stayed there all night if we would have let them. We made them get out at 12:30ish (AM) Yep, it was a late night but it was so worth seeing the excitement on Oakley's face.

Oakley once again did awesome! We enjoyed having the whole family there to hang out with. The kids had fun playing on the ground with their cars (we had a mat under them), cooking in the play kitchen and playing basketball. I wish I had pictures. I don't know why I didn't think to get pictures this time around. I think the family is tired of my picture taking. MEMORIES people!!!

We were able to have several visitors this time as well. My sweet childhood friend stopped in with toys galore for Oakley. He loved the puzzle and the Harry Potter card her little boy made. Oakley also received a beautiful quilt from his Gallup cousins. They patched together a quilt with blocks they decorated at the family reunion. What a great present. He sleeps with it on his bed every night to remind him of the great family support he has behind him!

The last day we were there, we were informed that Oakley would need a blood transfusion. David was tired of being there so he opted to have them place an IV and give him the transfusion simultaneously with his chemo. I had to leave the room because I wanted no part in extra pokes to my little boy. He did great though, received his chemo and blood and we still got discharged at a decent time. We were able to go to dinner and then back to another hotel for more swimming that evening. This water wasn't nearly as warm and the hot tub wasn't nearly as cool, but we did enjoy the company! :) Another successful week of chemo!

Thank you again to all who think and pray for our family & Oakley's quick recovery. I know that it's what has helped us get this far! :)

Monday, August 30, 2010

Another delay...

ANC = 1.13 Awesome counts...BUT... now he has low platelets. This would probably explain the little bit of trouble we were having getting his bloody noses to stop. We didn't think anything of it at first because everyone was getting them and we figured it was the air filter and dry weather we were experiencing. Not to worry, he didn't lose a lot of blood with his nose bleeds but it did take some time to get them to clot and stop bleeding. So, we were delayed yet again, but this time because his platelets were low. They thought there might be a chance for them to come up on their own so we waited.

Yet another great week for Oakley. His counts were high so he was feeling high! :) He spent as much as he could handle, being outside. He can now ride his trike all by himself! Way to go bubba!

He's found a new passion for painting...

and has mastered the talent of balancing on the "horse" while Maverick causes distractions from behind.

It really has been such a fun week with Oakley because he's been so energetic and playful. It was kind of nice giving his body a little needed break. He was finally able to feel more like himself.

Just had to throw this picture in. I love the three of them enjoying lunch together.

So, his platelet count didn't come up on their own so we were told he would need a platelet transfusion: They will get all of the kinks worked out just in time for Oakley's chemo treatments to reach an end, I know they will! They called and asked me to bring Oakley into the hospital Wednesday morning. I had to find a sitter so it took me a couple hours before I got him there. I think we made it there about 11 AM, not too shabby. Anyway, they checked him in, gave him a room, took his blood and told us he wouldn't be receiving the transfusion until 11 that night. Seriously?! What the heck were we doing there? The doctor came in and checked on us around 12:30 to which I, being nice, asked him why we had to sit around the hospital doing absolutely nothing for 10 hours? He agreed that there was no need for us to be there and so he had us discharged until the platelets arrived. (Did I forget to mention that the blood and platelets are ordered from Cheyenne?) We headed home and enjoyed our day in the comforts of our own home. The hospital said they'd call when the platelets were there.

So time comes and goes...10:00 no call...I call at 10:30, they say it'll be another hour or so...11:00...11:30...12:00, still no call...12:30 I call AGAIN, now I'm nagging. I get the green light to bring him in and the platelets should be ready by 1ish. We arrive at 1, the platelets are there but they must wait for another blood draw to make sure everything is compatible. 2 am rolls around, still no blood drawn. 3 am, they show up to get his blood and inform me it will take an hour to get the results. 4 am they finally start his transfusion which runs over 2 hours. 6:30 am, they get him discharged and we get to go home. What a NIGHT!!!

After all is said and done, we do get the green light to head to Salt Lake for the weekend to hit week 11 treatment. Yeah!

Saturday, August 28, 2010

Week 10 (It's our week off...)

This week started off a bit rough. Poor Oakley came home with a bad case of nausea and vomiting, a side effect to the chemo he's receiving. The poor kid was hungry all the time but everything he ate, soon came up. We finally got him some Zofran (teeny, tiny bottle worth $65. I had a cow!) This seemed to help once we convinced him it was going to help make him feel better, yes we're still having issues with taking medicine. Can you blame the little guy? Once he got over the nausea and vomiting, the rest of the week went great!

For those of you who haven't caught on yet, Oakley's favorite place to be is outside. I know, some of you might have thought it was in front of Harry Potter but really, this kid loves being outdoors. We took several trips up Casper Mountain so that Oakley could throw rocks in the water.

We had also heard from friends that you could feed the deer right out of your car if you drove around the base of the mountain. We took carrots the first night, they weren't interested. (They don't like black licorice either!) The second night we went we took apples. The buck loved the apples. Note: cut the apples up, it makes it easier for the deer to eat. Sorry no good pictures, I didn't want to scare them off. They literally do come right up to your window, sniff you out and then munch on whatever you're offering them... if it looks good. :)

Again, another good week for our little buddy. He continues to improve with his leg functions. He's always trying to stand up & even walk at times. He's so proud of himself when we get out of the car because he gets himself out of his car seat and then stands between the front seat and back seat. He has to let all of us know that he's standing, waits for us to clap and cheer, then he says, watch me walk and he walks to the door using the seats as support. More clapping and hugs! He's happy! I'm happy! :)

Wednesday, August 18, 2010

Week 9 (A trip to UT with dad)

David was able to take some time off and accompany us this week. We loved the company...

Here's what my boys did:

We found a basketball hoop and Oakley LOVED shooting his spiderman ball!

David found a trike that Oakley fell in love with. We went out everyday for a ride. Oakley started out being pushed and by the end of his 5 day treatment, he was riding that trike by himself. It has been so amazing for me to see how far he's come.

When we get to go outside, Oakley loves spending his time in the garden. He especially loves throwing things into the water. It started out being little rocks but some how he got hooked on throwing his "nomies" in the water. (I think it was because he saw other people's money in the water and thought that was pretty cool.) We started gathering pennies so he wasn't throwing away our dimes and quarters. Yep, the kid who loves collecting his "nomies" also loves throwing them away! Okay, I'm sure he's not throwing them away, I'm sure the money goes to a good cause! :)

This is one of my FAVORITE pictures. I got to spend the night with Oakley the night before, I don't think there was much sleeping going on. (We took turns staying at the Ronald McDonald House because we both didn't need to stick around at the hospital and not sleep.) Anyway, David showed up around 8 AM and immediately climbed into bed with Oakley. Here's where they laid until...

Yep, you're reading that clock correctly... 10:45 AM. I think I actually took the picture before they woke up, so imagine another 15-20 minutes before they actually came to for the day and ordered some breakfast!

Just a picture of me and my boy. I promise, I'm not squeezing him, this is his "smile" face. We're working on not having him look so pained! :)

I loved that he was in such a good mood this entire round. He did however start up with the nausea and vomiting around day 3. This was no fun for us watching him empty his stomach at least twice a day but it didn't seem to slow him down any. He still asked for his regular meals & snacks, ate them and thoroughly enjoyed them.

One more random picture... He loved sunbathing in the windowsill and
watching the cars drive by.

We were also able to go to dinner with some great friends from Indiana and were lucky enough to talk Uncle Carl into baby-sitting for a couple hours. Oakley enjoyed the change in company and we enjoyed the evening out with friends. Thanks Uncle Carl!!! Oakley still talks about how Uncle Carl lost his brown shoes. (He put them away on a shelf in the closet and it took us a while to find them.)

Wednesday, August 11, 2010

A FEVER = More Hospital Time

Yep, you read the title correctly. Oakley developed a slight fever last night. It actually toyed with us through the night. It bounced from 99.0 to 100.9. But by morning, he was holding on to 100.6 and complaining of a sore mouth and throat. Both side effects of the VinCristine that he's receiving. Anyway, when a fever of 100.4+ lasts longer than 1 hour, we're supposed to call PCMC. Yep, that's what I did and this is what happened... we knew what to expect which is why we were dreading making the call...

PCMC protocol: Head to the local ER, get a CBC and blood culture then start an IV antibiotic. If the ANC (absolute neutrophil count) is okay, we get to go home after a "few hours". If the ANC is low, (below 500) then they start a longer antibiotic and we're admitted to the hospital for a minimum of 48 hours. AND THEN... we wait it out, yeah! He must go 24 hours without a fever and show improvement in his ANC levels.

So, here we are at the hospital. Oakley doesn't like the hospital at all! He's completely shut off from everyone. I'm not sure if he's sick of people coming in to bug him or if he's just too tired to fight at all. Probably a combination of both. His ANC was low (450) so they of course admitted him. BUT, he did manage to kick the fever (actually, I don't think they've taken a high temp reading yet while we've been here) so now it's really up to the pediatrician on how long we have to stay. Dr. Myers likes to hang on to the patients until they show improvement in their ANC.

We got to stay for the next 48 hours. Oakley continued to fight the nurses over checking vitals, checking his port and changing his diapers. He wanted so badly to eat, I think this is his one other comfort, (first being Harry Potter,) but because of the sores in his mouth he was unable to eat anything. This only added to his frustration of being in the hospital. We finally got him to drink Pediasure, his own chocolate milk shakes. He's hooked and that's a good thing because he's losing that plumpness in his cheeks.

Tuesday, August 10, 2010

Week 8 (Home Again)

Oakley did AWESOME on the drive home! I think he did so good because he knew I was driving and couldn't do much else for him. He rode in his seat without a fuss, slept enough and only asked to stop once... he was hungry! :) We made a stop in Rock Springs for a 'hangaburg' and fries at his request... which once we finally made it back into the car he told me he was going to save it to share with Harley & Maverick. That's my boy, he was always so good at sharing! We ended up having to stop two other times, once for me and once for gas. I know, next time I'll try to coordinate the stops better, should be able to make the drive with only one stop! :)

As usual, Oakley was soooooo excited to be home again! He is continually improving! He was fitted for braces that are supposed to keep his calves stretched so there's not as much therapy needed later... and got a second pair to wear during the day. We love having this smiling and happy little boy home with us. Harley loves having her pal around to play/argue with as well.

David found these little tykes cars on clearance at Walmart. We made the mistake of buying only one and had to go back the next day for the second car. We have to pry these boys from their cars when it's time to go in. They love being pushed up the driveway and then to coast back down. David has much more muscle behind his pushes so they usually make it all the way up the driveway for a longer ride. When I push, they only make it halfway. I guess it's back to the gym for me...

Oakley remembers being a normal 3 year old. He's got a lot of determination and drive to do the things he used to be able to do. This hopefully will help him out in his future recovery therapy. He wanted to ride his bike so he and dad fixed the seat and off he rode... we wish, but he did try VERY hard to ride his bike. He did become frustrated several times because his legs were 'broken' and he probably would have stayed outside all night trying if we hadn't insisted that he come in and take a rest.

I know I've said this a million times, but what a trooper! This kid has more guts than I have ever had. I know I would have given up but this little guy keeps pushing ahead! He actually enjoys wearing his braces and has tried several times to stand up with the help of the couch.

This week was also our trial run with receiving chemo treatment here in Casper. Oakley got to meet Dr. Myers and receive his Vincristine Chemo. What a nice change, we got a week off from driving to UT. This particular medication is injected right in the office and is given over just a few minutes. It was a quick 1 hour visit and then we get to go home. Oakley liked this! We think it was a success and we're excited for the weeks that he can just stay here and receive the Vincristine.

Tuesday, August 3, 2010

Week 7 (Delayed but in good spirits)

Oakley didn't like the idea of coming back to the hospital again on Monday, but this time we got to stay. Oakley did awesome! I think it might finally be becoming somewhat normal to him (knock on wood) or at least he knows he's not going to get out of it so he might as well make the best of it! Again, he tolerated the chemo very well. He loved riding around in the little tykes police car, playing with the race track and painting.

Just had to show the baggage that goes with him wherever he goes. Seriously, what a drag, we literally drag it everywhere we go!

Look at how plump those cheeks are, we haven't seen that in a very long time!

Oh and eating! This kid really does enjoy his FOOD time! :)

We were able to bug the nurses enough around here that we were actually discharged Wednesday evening at 11 PM. Yep, I insisted that we get out of there no matter the time! If we stuck around until morning they wouldn't discharge us until 11 in the morning or later. Some rule! Oakley was excited to be leaving the hospital behind. All he could talk about was getting home to see Dad & Harley. :)

Thursday, July 29, 2010

Back to Salt Lake for more Chemo!

Oakley was scheduled for his next round of chemo on July 29th so we headed down the day before with some friends. About 1/2 hour outside of Salt Lake City the nurse called and told me Oakley didn't make counts and wouldn't be able to receive his chemo the next day. Seriously?! Yep, she was serious. She said she was sorry but they would draw his blood again on Monday and see where he was at. Oh, and have a nice drive back! I really tried to keep my cool with her, (I'd say I did an okay job)! Needless to say, I was TICKED!!! I was more mad at our Dr.'s office in Casper because they're they ones who waited two days to fax his blood results to the hospital, if they had faxed the results the same day they faxed them to me, all of this could have been avoided and I wouldn't have been STUCK in Utah! So because I really didn't want to make our friends turn around and drive home the next day only to have to again, drive back out on Monday, I called the hospital and asked if we could get a blood sample sooner. The hospital agreed to redraw early Friday morning, only because we were from so far away.

(Quick Insert: Thank you so much to the Hansen's for giving us a ride out to S.L. I don't want to sound ungrateful for their kindness in letting us tag along. It definitely made the ride easier and funner... I didn't have to drive and I had someone to talk to! Thanks again, we owe you!)

Bright and early (8:30) Friday morning we headed into the Oncology clinic. They drew his blood and then sat us in the infusion room for chips and movies while we waited. Around 10:30 they said he'd met counts and they started him on IV fluids. Now we were just waiting for a room to open up on the Oncology floor. Around 12:30 they came in and told us there was a mistake with his lab results and he was still too low to give him the chemo. Seriously, again?! So, home we went to spend the weekend at Uncle Carl's house! This time I just smiled and said, we'll be back! :)

Well, David was supposed to be coming down for the weekend so he could drive us back. What now? Since it was already in the plan, he went ahead and brought the kids down for what ended up being a great getaway weekend. I know, in Utah right? It was perfect. Oakley was in the BEST mood!

One of his new favorite things to do is watch movies on Dad's ipod!

Watching Harley & Maverick dance in the rain!

Notice Harley is too wimpy to get near the rain, she's dancing under the trees.

He loves to dance!

We went and saw How to Train Your Dragon TWICE! Oakley literally laughed his head off! He LOVED the movie. He ate, ate, and ate some more. We made at least 3 stops at fast food restaurants a day... and there was NO wasting. He inhaled everything he ordered each time. It was great seeing him in such high spirits!

Home Sweet Home

I'm getting behind, be patient while I play catch up!

(I'll add pictures when I get back home)

Yep, we got to have our little guy home for almost a week! July 21st - 28th! It seriously was a bit of HEAVEN! :) David decorated his 'new' room really cute. (He switched the rooms around so now Harley & Maverick share a room and Oakley has his own room.) He doesn't really like his new room, he wants his old room, the one with Harley in it.

Oakley adjusted fast to being home... that is, he was more himself!
The first day back, he headed downstairs with Harley and back up again. That adventure wore him out but he made the trek atleast two other times while we were home. This was a HUGE accomplishment for him. It makes you much more appreciative of your abilities after you watch him maneuver himself up the stairs, those same stairs he used to be able to climb up and down with out any problems!

Oakley did great at following Dr.'s orders while we were home:

1. He did great at drinking the fluids the Dr.'s wanted him to drink (1.2 L/day). Oakley got very tired of us telling him to take a drink. He'd tell me, "ahhhhh mom, I said I'm tired of drinking" or "I DID!!!" He always did better when David came home from work. I'm not sure if David is better at convincing or threatening, let's think both! :)
2. He's peeing on his own! I think we had to only straight cath him 2 or 3 times before we decided he didn't need it, YEAH!!! (Sorry for those of you who don't really care to know this bit of information!) We didn't want to be the ones putting him through more than he already had been through. We're supposed to be his safety net.
3. He's smiling!!! This is what we were waiting and hoping for!

Oakley even graced us with his presence one night at dinner. It's been a couple months since he joined us at the dinner table. It was fun having the whole family around the table! Of course, it was Olive Garden that did the trick! Thanks Janie :) Maybe David is going to think twice before he turns his nose up to the suggestion of Olive Garden again! Hee Hee, my plan was brilliant! :)

It's been soooo much fun watching Harley, Oakley & Maverick "play together" or as they enjoy it, fighting and arguing over anything and everything. Better yet, we hearing it! :) It's also become a ritual to head outside around 8:30 or 9, after Oakey's nap (I'll get started on that later). He loves sitting in the lawn chair watching the other two play and then he usually insists on one trip around the block before we head in.

As for sleeping habits... they're AWFUL!!!! What's worse, he's got Harley & Maverick on his same late night schedule! Really, how can we tell them no when they're all having fun, laughing, and giggling at midnight?! Easy, we head to bed and hand Oakley the remote. He knows what button to push when everyone is sacked out on the couch! It's a GREAT system we've got going. As I mentioned before, he's gotten in this bad habit of taking a 2-3 hour nap around 5. This makes for very loooooooong evenings. The upside to all of this, Harley & Oakley usually sleep in until 9:00 -9:30ish and Maverick, until 10:30!

We thoroughly enjoyed our visit home.

Actually, WE LOVED IT!!!

Sunday, July 25, 2010

He's up and playing...

It does my heart good to see my little boy wanting to play. The hospital has definitely messed up his internal clock... his most active time of the day is between 10:00 PM and 2:00 AM.

Yes this does make for long nights and early mornings. I think he's chosen this time to be himself because everyone seems to leave him alone! It's actually tons of fun hanging out with him then. He's laughing, giggling, asking for food (hot pretzels, chips and salsa, circle soup, curly soup, etc.). Of course the kitchen is closed at this time so I'm having to guess what he might ask for and order early. Usually, I'm wrong! For those of you who know, he's hard to persuade this kid otherwise when his mind is made up. We've made do! :)

Thursday, July 15, 2010

He's losing his hair!!!

Yep, Oakley is going bald... it's been kind of hard for me to watch. He's literally lost almost all of is hair in the last day and a half. All he has left is fuzz, and it looks blonde! Maybe I'll get my blonde hair, blue eyed kid after all! You've all heard those stories how people's hair grew back different colors or textures, eyes can change too can't they? I can wish can't I? :) Anyway, I can't believe how fast if fell out. His fighting and rubbing of the head all over his bed has helped with this I'm sure. Gosh, he's still such a cute kid ! :)

July 14th

(I think he's tired of me taking pictures... I want memories! )

July 15th

Okay, he actually didn't lose all of his hair. He's got a small bit of fuzz left on his head (and it looks a light blonde color in the right lighting... this'll be the closest I get to having a blonde haired child)! The nurses said if he hasn't lost it, he probably won't... as well as his eye lashes and eye brows. They've thinned out but he gets to keep his long lashes! Yeah!