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!

video

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. :)