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!!!

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! :)

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!

July 15th

Wow, a lot has happened already since I last updated... get used to me being behind, SORRY!

David and the kids came for the weekend. It was just what the Dr. ordered.

Oakley started using the potty! Yeah! He still wasn't emptying his bladder enough (still having to cath him intermittently) but he was going on his own! The doctors were pretty convinced he had lost this function, but Oakley proved them wrong! Way to go Oakley! :) Also, he started moving his toes a little! He's still not able to stand on his feet but he's moving his toes, that's progress! The doctors said one of the side effects of another chemo drug is drop foot. This means that he loses the ability to lift his feet at the ankles. So, really it could be a year before we know if he's even got the ability to move his feet and toes. Can't this little guy get a break?!

While the family was here visiting, we finally saw a new/old side of Oakley. Yep, we got to see him SMILE! It was so good to see him finally laughing and interacting with us. There were a couple nights where he wanted Harley to tickle him and they discussed how funny the cartoons were. It was so good to see these best of friends hanging out again.

Maverick wanted in on the sibling fun so he took Oakley for a ride in the wagon. Oh how Oakley loves to be outside. He begs to go outside at least once a day. It's hard telling him no on the days that his counts are too low to leave his room. Luckily his counts were up by the end of Dave's stay and we were able to take him outside. :)

Oakley has become quite the night owl. He plays grumpy all day and then by 11 PM, he's all fun and games. He loves just hanging out and eating of course. He loves playing with his Toy story characters, doing sticker books, playing his ABC computer game, and watching the Harry Potters. All of this until Mom & Dad can't keep their eyes open, usually around 2 AM we make him settle down and go to sleep. We can't bring ourselves to make him go to bed when he's in such a good mood. We enjoy hanging out with our old, silly Oakley.

Rest of the week...

We hit a few road blocks this week. First off, Oakley isn't taking one of his meds very well. He's got great gag reflexes and manages to throw up his med every time we give it to him. Second, the doctors warned us that one of the chemo drugs Oakley would be receiving could give him mouth sores and often times patients end up with feeding tubes because it becomes so painful. They hit me this morning with wanting to give Oakley a feeding tube now because he was beginning to get the mouth sores and this would b an easy way to administer his drugs as well. I cried... then said do what you need to do to make my baby better. Then, they sent the dietician in... good news... NO feeding tube. Oakley is eating great and we've found ways of 'hiding' the med so that he doesn't gag. (They switched it to the pill form and now break it open and add it to a little Sprite or Rootbeer.) So far, our Oakley is doing great. He's still asking for lots of pepperoni, hot pretzels (buffalo wing flavored) and chips.

We're still having to cath Oakley every couple of hours and now the Dr.'s are talking about us having to do this at home. Seriously, do they not understand that I have two very curious little ones at home and a very uncooperative kid every time we tell him it's 'time'? We're keeping our fingers crossed that Oakley regains this ability very soon! As of now, he's not interested in using the potty.

David & the kids are headed down for a visit this weekend. We're excited to have them close again! :)

July 5th

We actually had a great weekend. Oakley started his chemo treatment last Thursday. It was a 2 1/2 day treatment so he finished Sunday afternoon. He seemed to really tolerated this particular session very well. He threw up only twice to which I don't blame the chemo for. Oakley doesn't either. The first time he yelled at David for feeding him too big of a bite of mashed potatoes. He was asking for more mashed potatoes before we even had him cleaned up from his puking incident. The second time, he didn't want to take his medication and made himself gag over it. Yep, puke all down the front of me, inside my shirt and all! We caught some of it in a bucket to which Oakley had to tell me sadly that his cheese crumbs were in there. He wanted more! He finished his pepperoni pizza dinner and shredded cheese just fine. Seriously, what a character! He's not going to let this cancer or chemo get him too far down. Just the kind of attitude we need to see! :)

One of Oakley's issues this week is the immobility of his ankles and toes. Since his surgery he has been unable to move either. The doctors said they might not have gotten the tumor removed in time an now as a result it could take longer for him to regain those functions back. We're hoping they come back! He's lost a lot of muscle in his lower body. If you make him mad enough he will move his upper legs and we even got him to roll over on his knees once. It hurts for him to sit up straight and we're thinking it's because he doesn't have a tushy! He's mostly bones covered by a thin layer of skin. My poor Oakley!

The other issue this week is his inability to urinate. They've had to straight cath him 5 times in the last 15 hours. It breaks my heart to see him in so much pain and not because of his back surgery! I finally opted not to be one of the people who held him down while they drained his pee. Other than this minor setback Oakley seems to be doing great physically. I do worry that all this trauma in the hospital will have some lasting effects. Any advice?

Oakley will receive his second round of chemo, a quick 5 minute infusion, this Wednesday or Thursday. They said there usually aren't any big side effects to this infusion so we're keeping our fingers crossed!

All in all, we're definitely trying to be optimistic. We want to thank EVERYONE for your love and prayers. We know that it has kept us calm and comforted more than once! We're looking at maybe getting to go home for a week before he starts his third round of chemo.

Rhabdomyosarcoma...

UNDER CONSTRUCTION...

I'm not finished with this post but I had to get it posted so I don't get the dates out of order and fall further behind than I already have ... feel free to skip over this post, it's more for our memory of how this all began. Check back when you can... I hope to keep it updated pretty frequently!

(This really doesn't do justice as to how big his bump really got)

My sweet boy started getting sick about a month ago. We found a bump on his left cheek and around the same time, he started complaining about pain in his legs. We thought his cheek would resolve itself and his legs, we blamed on growing pains. We took him to his pediatrician who admitted him to the hospital for several MANY tests. We then began working with an infectious disease doctor, an ENT doctor and a physical therapist. They did all sorts of tests and check-ups and adjustments ... nothing. Oakley only got worse... the bump in his cheek got bigger and the pain in his legs became unbearable. He went from walking, to crawling, to dragging his legs behind him, to no movement. We knew we needed to figure out what was wrong with our little boy so we packed him up and headed to Idaho for a second opinion. One doctor suggested we skip all the testing and take him straight down to Primary Children's Medical Center. After much debating, we took his advice and headed down. What a great choice, if only we had made it three weeks sooner!

June 23-26: We took Oakley to the Emergency Room at PCMC. The ER doc asked a lot of questions, ordered a few tests and admitted him to the pediatric unit. Spent several mornings listening to him scream for cheetos, mashed potatoes and hot pretzels because he had an NPO order (nothing by mouth). They wanted him to be ready whenever they got around to sedating him for the different tests ordered. X-ray came back showing several tumors down his spine which alarmed the doctors and soon the Oncology doctors were involved. A parent's worst nightmare! They decided to do a biopsy of the tumor in his cheek, did I mention that he had a smaller tumor that crept up right behind his ear. They decided to remove this smaller tumor for testing because the bigger tumor was intertwined with all the facial nerves, good choice. So, Friday morning he was put under and underwent his first surgery.

It was a success and we were then transferred to the Oncology unit or ICS (Immunocompromised Services). The next morning, they became concerned about the larger tumor they had found on his lower spine. It was wrapped around the spine and pressing on his spinal cord. So, off we went for surgery #2 Saturday afternoon. Another success, or so we look at it as being. They were able to relieve the pressure from this tumor. Oakley wasn't able to move a whole lot after this surgery due to the pain. He quit moving his ankles and feet which concerned the Dr.'s. They said that trauma like his to the spinal cord could take up to 6 weeks to recover from. They worried they might have gotten in there too late and the damage was done. We sure hope this isn't the case. He's a fighter and we're hoping he regains this ability in the future.

June 27-29: And the waiting begins... ... ... We were told that they should have some answers by Monday morning. David cleared his schedule for another day and the waiting game began. Monday came and went. David cleared another day of patients and we were on to Tuesday. No answers in the morning...more waiting...no answers by early afternoon...more waiting and then 5:00 rolled around... The doctors took us to another room where they broke the news to us. Our little baby had Rhabdomyosarcoma. A rare childhood cancer of the soft muscle tissue. In Oakley's case, this disease had spread all over. They found several tumors down his spine, a couple in his cheek, a couple on the back side of his ribs, both hips, his left femur and in his bone marrow. To the Dr.'s there was still hope but it was going to be a long journey because of all the places it had been found. I of course had to ask... and they said they had seen kids last only a year and others up to 3 years. We were devastated, scared, hurt, angry and so much more.

Since that awful day, we have seen miracle after miracle take place. We have been blessed with so many people who care and have prayed on Oakley's and our behalf. We can't focus on how long we might have this precious little boy with us but we have to focus on the time we have with him right now! He's such a special little boy who's definitely a fighter. For this, he will be blessed! He's not only loved & cared for by his parents, brother and sister very much but he has his Savior looking out for him. We know everything will work out for the best! :)