Thanksgiving

Had a great day yesterday with my family. Dinner was great, and so were the desserts. In my family we have three birthdays in the span of 2 weeks so we celebrate them all on Thanksgiving. This means lots of dessert with cake, and ice cream being added to the usual pumpkin, and apple pies. I don't complain because I eat a little bit of everything. I felt pretty well yesterday considering the lack of sleep I got the night before doing some online holiday shopping. We played video games with our younger cousins. They loved Little Big Planet. It was they're first time playing the game, and in a few hours they got so good that we beat the most difficult level in the game together. It was epic. Way to go Ryan, and Samantha! It was great fun!

No Longer a Teen

Double Digits!

Biggest 10 Year Old Ever

Today I feel pretty tired. But I was up a few times last night getting some deals so it's partially my fault. It's worth it because I'm almost done with holiday shopping, and I saved a ton of money. Took a 3 hour nap from 12 pm to 3, and it helped a lot.

One last thing. Tomorrow will be the last day to donate to the Novembeards campaign. Below is a picture of me and my uncle Paul. He has just a little bit more facial hair than me. It's close though I swear, mine is just invisible.  

To donate click here.

Scan Results

I've been getting some of my results over the past few days. I hoped I would have gotten them earlier, but I didn't. The big test result I've been anxious to see was the MRI, and I finally received it this morning. The test results I got are the CT scan, and the MRI, but no bone scan.

Let's start with the MRI results because that's what I'm sure you've been waiting for too. I read the report, and from what I can tell, everything looks good. What's left of Jimmy didn't absorb much of the contrast dye meaning the cells aren't active. There was less absorbed this time on the outside, and little to none on the inside. It's like an empty shell. My surgeon said that this happens sometimes. When they take Jimmy out, they are going to run tests on the cells of the tumor to find the necrosis percentage which is the percentage of the tumor that is dead. She said that in cases like mine that they are a lot of times close to 100%, which is awesome! Hoping for that 100% necrosis percentage. The bone marrow in my arm also didn't absorb nearly as much as it did on the original scan. And most importantly, Jimmy shrunk SIGNIFICANTLY! Here's a chart displaying the original dimensions, and the current dimensions.
 

That's an 81% decrease right there folks! No wonder why my arm feels so much better than it did in July. There's like nothing there now. It's still kind of long, but the width, and height decreased a lot which is what saved me when calculating the volume.


Now onto the CT scan. There was a 2 mm nodule in my right lung, but my oncologist said that it's nothing to worry about, but we're gonna keep an eye on it just to be safe. It wasn't on the last scan, so it kind of freaked me out when I saw it on the results. I called, and didn't get a call back for a few hours. It wasn't fun. I was more afraid about this little 2 mm nodule, than I was back in July when I was being diagnosed with this because I know how bad this cancer spreading to your lung can be. Then I talked to one of his nurses, and she explained that it's nothing to worry about, and it's very small. Like so small that its barely detectable by a CT scan. I'm doing better now, but I'm still a little scared about it. I'll feel better after my next CT scan if it doesn't change in size, or shrinks. I mean it might not even be Ewing's Sarcoma at all.

So I'm still waiting for bone scan, but I'm not too worried about that one. I don't think it's going to show anything. I'm pretty sure it would have shown on the PET scan that I had before I started treatment.


So what have I been doing with my time during this wonderful break that I have you may ask? Well, a lot actually. I had some friends over on Saturday. It was great seeing everyone. It was fun crushing my friends in Madden! They couldn't handle my awesomeness. On Sunday I went to church, and received the Sacrament of the Anointing of the Sick. Thanks Father Gerry! I also enjoyed dinner at one of my favorite restaurants. Banko's! I got the orange roughy. Never had it before, and I thought it was really tasty. It was a really fun night out with my family. On Monday, I just rested at home. Didn't do much. I feel like I should have been somewhere that day. Oh yeah I forgot, I would normally be getting chemo, but not this time. Yesterday I had another friend over. It was a good visit. Played some 2k, and talked about sneakers. I don't think I've mentioned this before, but I love retro sneakers, and so does my friend. We're sneakerheads! My favorite sneakers are the Penny Hardaway retro's because he's my favorite player of all time.

Today I'm just resting. Getting my body ready for my favorite holiday tomorrow...Thanksgiving! I can't wait to see everyone tomorrow. It's going to be a great day! 

Lastly, thank you everyone for the prayers. They definitely help, and the proof is in the numbers. Keep praying for my healing of this rotten disease. Also for all of the other children battling cancer.

Me being a goof at Banko's

Good News!

Just finished my last scan. The bone scan, which was the most difficult test for me. The scans yesterday actually weren't too bad. I didn't feel claustrophobic during the MRI, and CAT scans. I think the ativan helped with that, and the tubes weren't as tight as the ones I have been in before. The CAT scan only lasted 5 minutes, but the MRI was a little over an hour. The bone scan was really bad for 5 minutes, but the remainder of the test was easy as 3.14. If you were wondering what the procedure is for a bone scan since you probably never had one/heard of one before. It works like this. They gave me a radioactive injection today at 11am, and told me to come back at 11 for the scans. I had to make sure to drink lots of fluids during this time to lesson the potency of the radioactive material in my body. When I got back, they ran the test. The machine they used looked like this.

My head was straight forward, facing the plate
during that portion

The test took around an hour, but the worst part was the first five minutes because it was the only time that your head was under the plate. After that, it was so easy. They just slide you out further and further until your whole body has been scanned.

But enough of my bickering, let's get onto some exciting stuff. Before I explain I need to say that the final measurements of the MRI, and the catscan results aren't in yet. So I don't know if the CAT scan was good, and of course the bone scan isn't known yet as well. 

So the plan for the surgery changed yesterday and for the better. I'm not going to be losing my whole humerus anymore! I will lose a chunk of my humerus, and some muscle and the bone will be replaced with some random dead guy's bone(cadaver). Thanks random dead guy! Then that will be coated with a titanium plating to fuse it to the ends of my humerus. I will have screws in my arm to help stabilize the bone, and I'll have a bone graft from my hip to help start the  dead guy's bone growth. If surgery goes well, there will be no loss of flexibility, and strength. Woohoo! Happy birthday, and Merry Christmas to me. The orthopedic surgeon who planned the surgery was very happy with how much the tumor shrunk. She could barely feel it there. The MRI showed that Jimmy was much skinnier, but still kind of long. She estimates it's about 5 cm in length down from 6.9. Yep, that's what happens when all you've been drinking the last three months is chemotherapy poison. She said the response I had with the chemo will make her job much easier when she performs the surgery. It was really awesome yesterday because I walked into the office with questions such as: How much flexibility will I lose?, will I be able to play sports?, and how long will the rod last in my arm? I walked out knowing that after this surgery I will be able to do everything that I used to do. Some more surgery stuff. The surgery will take roughly 5 hours, and I'll be in the hospital until Thursday. Another funny thing about this surgery is that it would have been on my birthday(the 3rd), but they couldn't fit me in. I'm very thankful for that. Lastly, this surgery wouldn't have been possible if it weren't for Jimmy being located in the middle of my humerus. Most of the time ewing's sarcoma will grow out of one of the ends of the bone making this incredible plan for surgery not possible.

I'll make a blog post when I get the results of the scans. Should be in the next couple days.

Big Day Today

I'm writing this post from the hotel. I'm a little bored this morning so I decided to write this.

Today I'll be having a catscan of my chest at 9:15, and MRI right after that of my arm to see how much Jimmy shrunk. Hopefully down to nothing! At 12 I'll have a meeting with my surgeon to plan the surgery. If you think these tests would stress me out, then you're absolutely right. The procedure itself is what gets me too. I hate being in those tubes, enclosed like that. I don't think I'm claustrophobic, but I'm definitely MRI, and CAT-phobic. And it doesn't end today with the tests. I got a call yesterday, that the doctor wants me to get a bone scan. So that's scheduled for this Friday. The past few days have been a little hard for me, so I did what I always do when I'm realy stressed out like this.....Exercise! Yeah, the same kid who didn't do anything but sleep in his bed all of Saturday was on the treadmill that Tuesday. I only was on it for 7 minutes, but I did work up to a jog. I also did some bodyweight squats too. It felt pretty good to exercise. It not only helped with the stress which is why I exercised in the first place, but I also need to stay strong. My legs have gotten much thinner from not using them, and I don't want them to get any weaker. I'm going to try to exercise as often as I can during this little break.

Running on the treadmill like a boss!

Please keep me in your prayers today!

3rd Cycle Complete

Another cycle of chemo in the books! This one was definitely the most difficult for me. It hit me really hard in comparison to what I've come to expect from this treatment. On Monday morning I felt really well and recovered from the last treatment, like I usually do. By the middle of the week I felt like I was a zombie; just going through the motions. Same routine everyday; wake-up, go to Radnor, get my treatment, go home, eat, then sleep. The latest I fell asleep this week was like 7.

But I can't blame everything on the chemo. I got off to a bad start on Monday right when I walked into the office. They were surprised to see me there, and for some reason I wasn't on the schedule for the day. It wouldn't of been a problem if an oncologist didn't have to be there to receive chemo, but the oncologist was scheduled to leave at 11. So I was out of luck since my chemo runs until 2. I got my treatment at Penn in Philly, which I didn't like at all. I could write a whole post describing this day, but I don't want to depress you. Let's just say that it was a much different environment from what I'm used to at Radnor.

Other than Monday's disaster, the only other garbage with last week's treatment were the traffic being bad on a few days, and Friday being a long, busy day. The traffic was just bad luck. I had to get up early on Friday because of the scheduling problem I talked about earlier. I wasn't even listed on the schedule for the entire week until Monday morning, so they fit me in the oncologist's first slot for the day for an appointment. 8:45 ugh! At least I got to finish chemo early that day though. This allowed me to attend the benefit that was held for me for a little while.

The appointment with my oncologist went well. He's happy with how I'm responding to the treatment. I'm kind of beating the odds with this treatment. Usually people need a blood transfusion by now when they get this chemotherapy regimen, and he's really impressed with my blood test results. It doesn't sound like I was even close to needing a blood transfusion. I still have my eyebrows. Thank God! I mean they are thinning out along with all of the hair on my body, but they're still there. The only thing that concerned him was the neuropathy in my fingers, and my now weak fingernails. I just noticed the fingernails getting a little sore like a week ago, and they have weird looking ridges on them. It's hard to describe, but he just said to watch what I do with my hands because I may rip a nail out. Ouch! The neuropathy has been an ongoing thing and has gotten worse. Now all of my fingertips feel numb all the time. He's gonna keep an eye on it, and adjust the dose of the chemo if it keeps getting worse because it could end up being permanent if you're not careful.

Yes I look tired, but
I'm comfy and warm too

On Wednesday I received something really awesome. A Chemo Cozy jacket. What's makes this different from your average jacket, is that it has zippers on it for ports, and picc lines. There are so many benefits to this jacket; Not having to take off your shirt to get the tubes attached to the port, being warmer due to the cold tubes not touching your skin, and having the coolest looking jacket around. I love it. After wearing it to treatment once, you never want to wear anything else but a Chemo Cozy to receive treatment. Thank you to Greg, and Ellen Hamilton for inventing this awesome product, and the Wills family for purchasing me it.


I also would like to thank everyone that organized, donated, and participated in the benefit that was held at Birchwood nursing home. They did an awesome job. It was nonstop all day. My family is very grateful for this. The raffle baskets will be chanced off December 2, so if you missed it stop by and take a chance on some great baskets.

Thanks Brian, and Joey

Lastly, I would like to thank the Sapa company for organizing a 50/50 weekly raffle for my family to help with the expenses. It is greatly appreciated.

Lastly, you're probably wondering how I'm feeling today. To answer that...pretty well. I think I'm going to go play some pickup basketball later....just kidding, but maybe in 2-3 weeks I might. I'm really itching to get back to doing some physical activity and right now might be my only chance in the next 4-5 months that I'll have. Because after surgery, who knows how long it'll take before I can use the arm. Well I felt significantly better on Sunday, and even better today. My Saturday of sleep did me well. Right now I'm still just a little tired. I should be feeling well by Thursday when I get my scans. For the results, I'll be happy with 70% shrinkage, and the lungs better be clear. I want that surgery to be very easy and complication free.

One last thing to note before I go. Thanks to everyone that is participating in Novembeards. The donations are going to a great cause, and I'm very happy to see the success were having with it. If you haven't checked it out already here's a link. Novembeards

Starting to Feel Better

Since my last post I have had ups and downs as far as I feel. I felt like I was beginning to get over the chemo on Thursday, but then on Friday I got like a second wind of it or something. I felt worse on Saturday, and really bad on Sunday, especially after church. When I woke up I felt a bit better than Saturday so I decided to go to church since I haven't gone in 2 weeks. Big Mistake! Church was like a workout. I didn't realize how tired I really was until I had to stand for a few minutes. Standing, kneeling, and sitting...a workout, that's sad for me. The standing parts of mass were killing me.  My heart was racing like I ran sprints during those parts. When I got home I slept on the couch for hours, and went to bed early too(7:00). On these bad days, the only thing that was making me feel crappy was the fatigue; nothing else. But it was so intense. Sleeping, and resting didn't seem to even help much.

Fortunately for me I started feeling a little better today. I still took my naps, but I didn't feel overwhelmingly tired. Today I finally feel like myself, and I have much more energy. Took long enough! My body needs to start working better, its slacking! It'll get a pretty good break after next week's chemo. Like 6-8 weeks from the poison, but I'm getting surgery in that time so it's not completely resting I guess. I'm kind of afraid of going in for my treatment next week because the last time I got the B treatment I threw up on the last day. I really don't want that to happen again. It's from the one pre-chemo drug. The side effect is a bad taste in the mouth, and the taste is the worst thing ever! I guarantee there is nothing in the whole world that tastes worse than the medication. What's really weird about it is that you get it through the iv so its not actually in your mouth.

Recently I was asked by the Sarcoma Foundation of America to share my story on their blog. It was posted a few days ago. You can check it out at http://curesarcomablog.org. I'm glad that I was asked to do this because I really want to help people that are suffering from sarcoma get through it with my story.

My uncle set up a fundraiser for sarcoma research. It's called Novembeards! Check it out! http://www.crowdrise.com/NovembeardsForMike. Research is very important for pushing treatment for cancer forward. There are some really interesting studies being done on sarcoma, especially Ewing's sarcoma, and these studies wouldn't be possible without donations and grants. I hope my Aunt Diane can deal with a grizzly bear for this month. 

Lastly, there is going to be a benefit for me at Birchwood Rehab and Nursing Center on Friday November 15th from 10 am to 4 pm. This is where my mom works. It is located in Nanticoke if you would like to go. There is a lot of basket raffles and food for takeout will be available. I won't be able to make it because I will be in Philly for chemo but my brothers and my dad will be there selling the bracelets. I am very grateful for their support.

Keep all the children battling cancer in your prayers. Especially Matt, Julie, and Maya, who is getting her surgery on Friday for Ewing's sarcoma.