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!

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.

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.

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.

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.

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!

It's supposed to be our week off!

WE WERE SUPPOSED TO GET 2 WEEKS OFF BEFORE WE HAD TO HEAD TO UTAH FOR 6 WEEKS OF RADIATION!!!

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!

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 ride...in 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!

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.

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! :)

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!

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! :)