This is a video of a very deep conversation Keegan and I had as he was getting from his nap. He actually woke up standing with his shirt stuck on his head crying! Once I removed it, this is what transpired…silly boy
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I’ve quietly been upgrading the blog software behind-the-scenes. I am now beginning to add more functionality such as making the blog accessible from blackberries and iPhones as well as adding small improvements such as threaded commenting and the ability to share posts through more of the social networking sites.
As for the mobile application, as with many it’s a scaled-down version of the blog. I can post to it from anywhere and readers can read the posts, comment on a post and use the contact form to contact me. All of my research is also there.
Here is a look at a few of the blog screens on an iPhone:
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Over the next week or so I will be performing an upgrade on the blog. If the blog is inaccessible, seems to lose some of its features or is sluggish just know that it’s because there is work being done behind the scenes. I am also pondering changing the entire look and feel of the blog and making it much simpler. Making it more simplistic I’ll allow me to have an easier time with it moving forward which I think is going to be a better situation for me.
I wanted all of you know.
God bless
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I hope that everyone in the US had a great Thanksgiving holiday. For those of you that decided to brave “Black Friday”, I’m sorry. I was in bed until 8:30am! Plenty of deals and plenty of time. It’s amazing to me to see people in front of Best Buy with coolers and tents, yes tents, at 4pm on Wednesday so they could pick up material possessions for a big price break. My own perspective is that this obviously means that on Thanksgiving Day, these folks are spending time away from their families. Of course it’s a personal decision but it’s hard to understand sleeping in a tent on concrete for two nights over a family holiday to buy a playstation 3 or whatever it might be!
I’d like to thank everyone who has supported me over the past three years as I’ve walked through this. I could never have endured this without God and all of the support of family, friends and all of the brain tumor survivors I have met along the way. Support through surgeries, chemo, radiation, physical therapy from a wheel chair to walking again, gamma knife, experimental therapy using DCVax, focal seizures throughout and other challenges has been invaluable In short, this blog has been a blessing for me. I know it has helped many based on all of the emails I have received – and if it only helped one person I’d be more than satisfied. However, what some of you may not realize is how instrumental this has been in my own journey.
Writing is a great way to think things through, release stress and helps one cope. Originally, this was a place to distribute my music. Now it’s more about my journey. It was then meant to update friends and family on my condition and store my research. Then I found that sharing my experience and my own testimony also gives me a sense of purpose in the middle of a storm. Traffic built and now it’s a popular site for primary brain tumor info and assistance based on one person’s view.
Today, it’s not such of a storm every day and that is a result of, in large part, everyone I have met along the way and many of those that I have met have come through my blog. Your responses to my posts, emails of encouragement or emails just telling me that you’ve found research and testimony that has really helped you on a given day is very uplifting to me. So to all of you, I give thanks for support, emails, phone calls, comments to my posts and help you are giving to others.
As I mentioned in my last post, I’m taking video now with a Flip video. So easy to use. Here is a clip from this week. Keegan received one of those wind-up toys – it’s a caterpillar. This is one of those clips of a child that makes being a parent fun!
This is called “Good Night Bug”. It’s short so keep watching.
I had a treatment using DCVax on Wednesday. I will update over the weekend. We are changing the protocol and using a cream called Aldera cream over the injection site. I’ll provide details later.
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We purchased a Flip Video HD – they are so great. HD quality, fits in your hand like a cell phone and just hooks up to the pc via USB.
With our new camera, I was luckily able to catch a secret rehearsal taking place – Keegan Miller preparing for his would tour with Elmo. Check it out:
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I believe I forgot to mention this. Our son Aidan’s class is sponsoring a child in Mexico who is in need. So, all of the students are encouraged to bring in some money once a month – a dollar or so. Aidan works for his allowance and he has a number of chores and positive behaviors that he focuses on to earn a weekly sum.
About a week ago, one morning he came out and told me he wanted to give some money to his teacher for this child. I said ok bud, what do you want to give? Mind you he’s been saving for months and he’s accumulated about $90 at this point. He looked at me and said “this”. In his hand was a 10 dollar bill. I smiled and said are you sure pal? How about 2-3 dollars? He said no. I said “how about 5 dollars?” No again. He said he wanted to contribute (tithe) $10.00 because we have lots of things that he doesn’t. For him, that was more than 10% of what he had saved over months. It really made me think about things. We send Aidan to private school but on top of that, I can’t say we tithe 10%. Of course there are many other circumstances including our medical situation – but to see a child unselfishly give $10 to another child who he doesn’t know – only that he is in need was amazing and it really made me feel good. He never once changed his mind nor regretted his decision afterward.
Aidan is a real inspiration…
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Over the past several years, I’ve been in touch with a countless number of survivors, caregivers, friends and family who have had prayer requests. I wanted to provide an area here where you could make prayer requests. There is also a tab at the top of the site. It’s set up as a running “comments” section.
Regards,
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Injection today. All of the standard labwork came back fine so the vaccine was sent overnight as usual. This really provides us with a lot of hope for us.
Among a number of emails I received, one really stood out. A mother emailed me to say that her family has been on this journey for 13 years since their daugther was 22 yeard old. They are at the hospital today for more treatment. So a prayer goes out to her and her family and friends that all goes smoothly and they are left with comfort and peace knowing it’s another step in fighting and getting out in front of this disease.
For me and I think I can speak for my wife (to some extent anyway), I think this is the essence of living with a brain tumor and how it involves the entire family in different ways. Support is certainly important – a key component of living life with a brain tumor. Closing off to the world never accomplishes anything.
From the family perspective, I just can’t do what I used to be able to do – climb ladders, blow through a list of items I want to get done. I get tired. I don’t feel how I used to feel. It’s different. I enjoy life though. It’s an adjustment for everyone. Even after everything we’ve walked through, there’s a continual need to adapt. My family can’t really know what it feels like just like I can’t really understand how my wife feels watching this unfold, trying to understand why I can’t be up for outings or errands in the afternoons, etc.
The more understanding, compassion and reciprocation that can be continued – realizing the better or for “worse” part of most of our vows and those limitiations, the better we do. Let’s face it though – this is a complex situation! This is but one part of it but coming together, organizing your treatment plan, being your own advocate and not taking a doctor’s first recommendation as the defacto answer. All of it comes and came together for us. But there are times when it can unravel and does. We all stumble but it’s a matter of continuing.
Was that a tangent? I think her email just inspired me and reminded me, again, of all the people in all kinds of circumstances face this – and many for a long period of time.
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on 6 months…moving forward can be difficult.
on 6 months…moving forward can be difficult. on Memorial Service Details on Current Status on CBS News: What’s Behind the Mystery Cancer Cluster?
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