Some Basic Info

I was first diagnosed with malignant brain tumors on 11-20-08 and I finished treatment for those on 4-13-09. I was recently diagnosed with a recurrence on 12-08-09. I set up this blog so people could follow along with my progress and keep up with what is going on in my treatment. I also wanted to put up information from my first go round so people could learn a little bit about what happened to me before.
The blog is set up with the newest posts first. Sometimes I will post stories from my first experience, in which casse it will be slightly out of order, but the titles will let you know. If you want to look at older posts, which may provide a better idea of the whole picture, use the "Blog Archive" tool on the right side of the page to browse them. The titles of the posts should be pretty self-explanatory. If you don't really know that much about me, or what happened, you should check out these two posts first: this one about what's happening now, and this one about my first experience.
Feel free to leave comments, it should be open to everyone now. Thanks for visiting, I hope this little blurb clears up some confusion, and I hope you like the blog.

Saturday, December 26, 2009

What's Going On

My name is Miles Austrevich. I was recently diagnosed with a brain tumor for the second time.
The first time I was diagnosed 11-20-08 and had three pure germinoma masses: one on the pineal gland, one on the pituitary gland, and a small mass in the back of my brain. I had surgery to relieve pressure that had built up on my brain as a result of one of the tumors blocking the fluid passageways and for a biopsy. The rest of my treatment consisted of four rounds of chemotherapy and about four weeks of radiation. My radiation treatment ended on 4-13-09 and all the treatment was successful.
On 12-08-09 I had a routine MRI a few days earlier than normal because I had been experiencing headaches for about a week and a half before. The MRI showed that I had a new tumor located in my left cerebellum. I had surgery on 12-21-09 to remove the tumor and to get a biopsy.
The surgery was a success, they got the tumor out and will get pathology results from it soon. The neurosurgeons were happy with my recovery and I stayed in the hospital until the night of the 25th. I could have gone home earlier, but both my parents and I wanted to make sure we had all the pain medication I was taking a little more under control, and waiting an extra day helped a lot with that.
Currently, I'm at home and have been resting a lot. My neck is really stiff from the surgery, so I have been lying down a lot so as to not stiffen it more. People have noticed my straight posture and my grandpa refer to me as "the plank" because i keep my neck pretty rigid when upright. The amount of headache pain since the surgery has gone down significantly, and the medication I'm taking has evened out so it is pretty manageable.
I go back to start the first phase of my stem cell rescue therapy on 1-04-09, which I'll talk about a little bit later. After that I start chemotherapy on 1-06-09 and I will have to do 2-4 rounds depending on how the tumor responds. Each round would be 3-4 days and happen every three weeks. Hopefully because they were able to remove all of the tumor I will only need two.
The stem cell rescue therapy will happen after the last chemo and consists of really strong and high doses of chemotherapy. during this period I'm going to have to be in the hospital for 4-6 weeks because the chemotherapy will make me severely immunosuppressed. The first phase of this happens before the other chemotherapy, they have to harvest stem cells from my blood while I'm healthy so that they can put them back into my system after I have the strong chemotherapy. On the 4th and 5th that'll be what happens, they will give me medicine that increases the amount of stem cells I produce and then filter my blood through a machine to separate out the stem cells they need to save. The reason they do this is that the stronger chemotherapy will pretty much kill off all my bone marrow, and they will need something to put back into my system for me to start producing blood cells again. Because of this I will have to stay in the hospital for an extended period of time, and will have to stay away from crowded areas, such as school, for at least two months afterwards. The actual chemotherapy portion of the stem cell rescue is only about a week long, but due to the time it takes for my marrow to recover after getting the stem cells I'll have to stay in the hospital for a while.
I will also most likely have to have a small amount of localized radiation to the specific tumor area after the chemotherapy and stem cell rescue are over, but due to the recentness of my previous radiation, it will be a small specific area.
That pretty much outlines my treatment plan, although I don't know exactly what the timeframe is, other than my first chemotherapy starts on the 6th of January.
Although spelling it all out makes it seem like it sucks pretty bad, there is a lot to be happy about. I take solace in the fact that I've been through it once before so I have a much better idea of what to expect, and that dealing with the experience won't be as much of a shock this time. The type of tumors I had last time were one of the easiest brain tumors to treat, and although it is more aggressive this time, it is still very treatable and I have a much better prognosis than most recurrence patients.
So, it'll be a long haul, but I'll get through it. There is so much stuff I learned from my last experience that I can use this time to make my entire treatment a lot better than it was last year.


gudmurph said...

Dear Miles, Adrienne and Family:
What can we do to help?
I know your family from a couple steps removed, but send you boundless support and hope for the road ahead.
What a fine young man you are!
Time to bring on the casserole brigade, if that might help with the reality of regular hospital visits?
Much respect and support,
Eileen A. Murphy, MD

Doreen said...

To one of my "all-time" favorite students:

Miles -

I know you will probably get this message after you have started your chemo, so you are probably not feeling very well. But, remember that this is not a permanent state, and you will again feel better.

Thank you for setting up this blog so that you can show off your excellent writing skills (and keep us informed).

Please know that I support and love you. I am thinking about you every day.

Mrs. Weiss

Dan said...

Miles --

BIG ditto to the teacher (above) who commented on your writing. Wow. There are many who can't write as well as they speak. But you're a double threat. You are one of the rare ones whose organized thoughts become even MORE organized and cogent when committed to paper.

Of course, we want essays, short stories, novels, and poety ... instead of all this medicalese!! In time, in time. What you HAVE given us is a gift, of course. The gift of your story and of your incredible resilience and unfettered optimism.

I'm pulling for two rounds of the strong chemo, especially since the surgery was such a success. And of course I'm pulling for more wonderful updates where we all get more of Miles -- miles of Miles, if you will (and won't you?).

Take care and we'll be in touch!

Dan G.

Anonymous said...

Hi Miles,
I will keep you in my prayers and continue that poitive attitude.
Your knowledge and strength continue to amaze me. But it shouldnt , you have always been a student that stands out in the crowd and not just because of your height. But then again you are a "Miles"
Take care
Mrs. Miles at Lincoln Elementary

Steven said...

Hi Miles - Just read your blog - The animations are stellar. Nice work uploading them. We are looking forward to nice boring scans with no tumors :)

We love you very much and think of you every day.

Steve, Victoria, Lucas and Nicolas

Yvette said...

Miles, whenever I read the title of this blog I think of the ABC show "Step by Step". It was on in the 90s. You've probably never heard of it. Not because you were too young, but because it's not really worth knowing. The theme song was called "second time around". Obviously, I used to watch it. Ok, maybe I still do sometimes. ANYWAY, if you want to experience it yourself you can find it on YouTube.

Good day, sir...

I said GOOD DAY!

vickie said...

Hey Miles, This is my first experience with "blogging". You did a wonderful job setting it up. I think you are an amazing young man!! We're praying for you. Mark and Sydnie say hi.

karen said...

Hi Miles, I talked to Grandpa Leland today and he gave me this blog address. It is so great to be able to keep up with your progress. Just wanted you to know that a lot of people in Jackson are praying for you and can't wait to see you soon. Keep up the blogging and stay strong.
Love Aunt Karen

The Vickreys said...

Miles-We know you from your long legs and time-warp-speed on the cross country course back at Lincoln! Thank you so much for your story - it is such a pleasure to read, which is such a strange thing to say about a brain tumor blog, but your passion, spirit and intellect shine through in your writing. Keep us posted, and know that there is a whole community cheering for you right behind Children's! -Caroline and Paul Vickrey and family

Anonymous said...

I don't know you personally, but words can't express the amount of admiration i have for you. Stay strong.

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