Home

Quote of the Day:

Music is moonlight in the gloomy night of life.
- Jean Paul

Safari Trip

My Story No Comments »

I don’t have a lot of time to write right now but we had a great time this weekend on her trip with Aidan. Here is a good series of pictures that is representative of what we experienced.   It was a great memory for us.  Our cabin was perched on a hill so my legs were worked hard.  PT this morning.

We hope you enjoy the pics.  Added a few more.

Safari - Feb 2010 063 Safari - Feb 2010 181 Safari - Feb 2010 049 Safari - Feb 2010 156 Safari - Feb 2010 062 Safari - Feb 2010 048 Safari - Feb 2010 157 Safari - Feb 2010 166 Safari - Feb 2010 167 Safari - Feb 2010 047 Safari - Feb 2010 155 Safari - Feb 2010 154 Safari - Feb 2010 133 Safari - Feb 2010 045 Safari - Feb 2010 130 Safari - Feb 2010 079 Safari - Feb 2010 125 Safari - Feb 2010 124 Safari - Feb 2010 120 Safari - Feb 2010 119 Safari - Feb 2010 114 Safari - Feb 2010 113 Safari - Feb 2010 102 Safari - Feb 2010 105 Safari - Feb 2010 086 Safari - Feb 2010 084 Safari - Feb 2010 080 Safari - Feb 2010 184 Safari - Feb 2010 183 Safari - Feb 2010 075 Safari - Feb 2010 071 Safari - Feb 2010 072 Safari - Feb 2010 060 Safari - Feb 2010 059 Safari - Feb 2010 180 Safari - Feb 2010 176 Safari - Feb 2010 179 Safari - Feb 2010 095 Safari - Feb 2010 099 Safari - Feb 2010 111 Safari - Feb 2010 118 Safari - Feb 2010 129 Safari - Feb 2010 138

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Fun with Video

My Story 1 Comment »

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:

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Father’s Day

My Story 1 Comment »

I’m FINALLY feeling better!  I didn’t post for quite awhile because this cold just became worse and worse and it finally required anti-biotics.  It’s taken the better part of a few weeks or more to start feeling better.  I still have remnants but at least I’m not laid out like I was.  This is a repeat of what happened last spring but I think it’s come and gone now.  Thank you for all of the emails and comments on the site.  Your words of encouragement have meant a lot. 

So Father’s Day – it was really nice.  My son Aidan – he has such a soft heart and as you’ve seen in other posts, he loves to color.  Well, he made a card for me and this one wasn’t so much coloring but it brought tears to my eyes.  These are the moments I live for.  This is why I want time.  There are are hard times, yes.  Really tough times.  Tough times at home trying to deal with what we call a “new normal”.  Tough times juggling work, medications, and doctors.  A very heavy load on my wife having to pick up pieces because I can’t do what I used to do.  Most of you know exactly what I’m talking about.

But…there are these wonderful bright spots that shine through.  Sometimes you have to look for them and sometimes they are right in front of you.  This was right in front of me on Sunday.

I’ll just place it in this post and close here.

aidan-fathers-day-09.jpg

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Memories for Later

My Story 1 Comment »

This was a great weekend with Aidan in particular, our 6 year-old son.  First, he loves to color as you might know if you are a regular reader.  I put this slideshow together last July showing some of the drawings he made – just looking at life through a 6 year-old’s eyes.  Anyway, he made the most thoughtful and tear-jerking card for me this weekend.  Just click on the thumbnail to load the card:

aidancardsized.jpg

On Sunday, I took Aidan to his first NBA Game – the Sixers vs. the Sacramento Kings.  We are LA Laker fans all the way!  I have been since I was a kid so I’m making sure he will be!  But we didn’t care much - he’s never been and it was a total suprise – he didn’t know where we were going until we got there.  My company has season tickets and I was able to to get a pair for this game – and the seats are amazing so this will be a great memory for us:

kings-game-dadaidansized.jpg

Aidan – So happy to be at his first NBA game

kings-game-aidansized.jpg

View from our seats:

kingsgameseatviewsized.jpg

And finally here’s the tickets, just so they are archived here always:

kings-tickets-aidan.jpg

What a great weekend!  I was actually feeling better too – no seizures and I had more energy.  My weight is still an issue though.  I just don’t feel like eating so I’m doing a lot of protein shakes and smoothies (berries and so forth).  I’ve gone from 175 or so to 160/165 or so.  I’ll be talking to my doctor about this soon.

That’s all for now…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

In Memory of Dakota

My Story 3 Comments »

dakota-350.jpgYesterday was a tough day for our family.  We lost our black lab Dakota.  We have two labs – a blonde and black, Bailey and Dakota.  They were the best of friends.  We first had Bailey, our blonde lab back in 2000 and he was about 2 years old – we rescued both of them.  We got Dakota about a year or so later.

Dakota was a true retriever.  When we lived in Southern California and took him to the beach, we would throw a ball past the shore break and he would just sprint out into ocean, dive under the shore breakers and grab the ball.  This guy would bring it right back, drop it at your feet and look up at you ready for more!  He had no fear and was built like a rock.  We took him down to a creek once that had a deep pool at one point in the creek.  There was an overhang looking over the pool that was about 6 feet high over the pool.  We thought “he won’t jump from there will he?”.  We knew the pool was safe because it was so deep.  Once the ball came out and he knew what we were doing, he just walked right up to the overhang ready to go.  The ball went in and he was flying through the air!  What a dog! 

The other story I really remember about Dakota that showed his toughness is Aidan threw a ball in the backyard and Dakota turned around and started running – he ran right into an aluminum column that supports our patio cover.  It bent the entire column but didn’t phase Dakota.  He got the ball and came back to drop it at Aidan’s feet.  And then there was the laser light!  He would chase my presentation laser incessantly.  Bailey could care less!  Not Dakota – he would go for hours if I let him.  Run it up the wall, on to the ceiling and he would just stare it down.

We are sure going to miss him.  I’m going to spare all of the details because I want this post to be happy.  He was a great a dog with a wonderful personality.  He wasn’t the type of dog that was a “curl up beside you” affectionate dog but he probably could have been a drug dog and was definitely a retriever.  Our son Aidan loved taking him in the backyard so he could “watch him skateboard” and Dakota and Bailey also loved to play together.

baileyndakotasm.jpgDakota, you were one great dog and we know you are in a much better place with God now – your quality of life here would not have been good and you can now run forever, jump over fences, into pools and do so many things that we can’t even begin to conceive.  I wonder what you’re doing now but I can’t help but think that you’re carrying something in your mouth (maybe a worn out tennis ball) and running as fast as you can.

We will always remember the good times that we had with you, the great brother you were to Aidan, Bailey and Keegan and the laughter you brought into our home for so many years.  I think your buddy Bailey also would say the same types of things if he could talk.   He spent a lot of his time with you, and one day you’ll both see each other again and can curl up on the floor and you can beat him to a ball on the grass – which won’t be very hard!

We’ll never forget you buddy….

Love, Mark, Rachael, Aidan, Keegan, Telli the Cat and Bailey xoxoxo

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Rehab Update / Thank You

Physical Therapy 5 Comments »

Hello everyone!  Well, this is the first time I have had the opportunity to post anything but it’s good to be able to put a quick update up here and to thank everyone.  My good friend Glen provided an update on surgery day and I appreciate that. 

One important clarificationGlen had indicated in that update that I had started on the vaccine treatment.  I have NOT started the vaccine treatment.  The first 7-10 days post-op are used to perform a number of processes on the tumor tissue, several of which will determine whether or not this treatment is compatable with my body chemistry.  I should have info on this in the following days so more to come on that as we move forward.

I wanted to check in and thank everyone for your support and prayers during this time.  They have meant everything.  There was a lot of uncertainty going into this – and obviously still is, but your prayers and support, prayers through my church and other churches, chains, etc – have once again resulted in more than we could have imagined.  In spite of the tumor now being a Glioblastoma Multiforme based on pathology, which was all but guaranteed going into it, everyone including the rehab staff, neurosurgical team and others involved are suprised at my recovery. Although I don’t have any function in my left toes, arching my left foot, side to side left ankle movement and other lower left leg functions, I have a prosthetic type of device that fits around my foot and ankle that is designed to provide strength and lift in that area.  This device with the some developing strength in my quads and left-side torso haved allowed me to take 20-40 semi-assisted paces using a cane.  I have walked around my room here, shifting weight on to the weak side (left) doing normal tasks such as hanging up clothes, closing blinds, brushing teeth, so I can strengthen what I now know I have.

For a guy who didn’t think he would be walking at all after the surgery I’ll take it!  Not sure I’ll be sprinting down the street.  My goals won’t have anything to do the physical.  They will have everything to do with how this unanticipated gift can be used in my relationship with my wife and children

Bottom line?

  • I WILL walk – no doubt about this.
  • We resected all  of the tumor that could be seen on the pre-op MRI.  With regard to a GBM, you could consider this a > 98% resection although you can never “get it all” with a grade 3 or 4 glioma
  • I have the use of my hands.  I can play piano, write, type.  Amazing.
  • I now have a vaccine treatment that I will be able to access – a full resection was a prerequisite.
  • I have been blessed with the use of an Acute Physical Rehab Facility – the staff and facility are top notch.
  • PEOPLE are amazing.  Without the body of the Church, I don’t know where Rachael, Aidan, Keegan and I would be.  Certainly not here.

Here is the planning board in my room to track my daily schedule, post verses that inspire me, etc.  Thought I’d post it here just to share my environment with you a bit.  Pretty interesting – a lot of people have asked me what the verses mean…

roomboard1.jpg

I am going to start picking my blog up more but it will be slow coming.  Thank you again.  I look to the future with excitement, one step at a time as I enjoy what’s really important. 

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Babies Are Hilarious!

My Story No Comments »

Quick post – this is a hilarious short clip of my 1 year old Keegan putting on a show recently in our living room.  We couldn’t stop laughing about this.  Things like this make issues like a brain tumor take a back seat, you know?  Check it out:

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Aidan’s Artwork

My Story 1 Comment »

My son Aidan loves to draw.  He sits down at the kitchen table and gets out crayons, pens, pencils, paints – you name it!  He makes cards, drawings and anything his mind can dream up.  I had this idea a long time ago that I would save all of this stuff in a drawer and then once the quanity of work built up over time, I would scan all of it and create a DVD.  So, it has built up enough over the last year and a half that I was able to produce a short DVD.  I know he’ll enjoy it (we’ll show him tonight) but I first output it in the format necessary for youtube.com so I could embed it here.

So here it is – Aidan’s Artwork slide show.  I just set it to some cool moving music.  Media is so wonderful – in this case, for me anyway, it takes you into a child’s mind in a way that you just can’t achieve in any other way. 

I hope you enjoy it as much as I enjoyed making it.  Most of all, Aidan will be proud and it’s something he’ll have forever.  How cool is that.

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Quality Time

Uncategorized No Comments »

It’s been awhile since I’ve posted – mostly because I’ve just been busy this week with the kids and obligations. Next week is going to be very busy. I have an appointment with my neurologist and oncologist. I haven’t had a simple partial seizure for awhile though which is great news! So, my medication levels with regard to Lamictal and Topamax, the two anti-seizure medications I take to control them seem to be adequate.

Aidan and I had a really fun time last Saturday and I have posted some pictures here. I have posted before about how he earns “tokens” when he exhibits certain behaviors we are wanting to instill in him such as listening the first time, picking up his toys, praying by himself, etc. Once he reaches 10 tokens, he gets to have a reward which is not material in nature. So, he chose ice skating! There is a great rink not too far from our house. They have two NHL regulation sized rinks and on Saturday mornings they have public skates from 10-noon. It is hilarious seeing all the kids skate around with the “walker-like” devices. These are a great invention – they are similar to walkers people who are older use but slide on the ice and allow the kids to get used to the feel of the ice. Aidan was tentative at first but he is fearless so after about 5 minutes he was trying to skate fast, spinning in circles and wanted to race me. He is so funny – he will try anything at all. Of course he wanted to try it without the walker so I skated away from him several times – about 5 or 10 feet and he would fall. Not wanting to be seen in that position he would try to get up really fast and fall again! I told him to just slow down and helped up off the ice and back to the wall. It was so fun though – he and I just had a great time. He had such a good time that he wants to do that for his next “reward”. We of course do things outside of the reward system but we set up some special things like this as motivation. The tokens he earns are cool colorful magnets that he gets to put on a board in rows next to magnets that have labels with the behaviors written on them.

So how fun! It was a great example for us of spending quality time together. These are the moments that I really cherish and again, it wasn’t that I didn’t before but as a brain tumor survivor they take on a different meaning. Honestly, none of us really knows how much time we have left but I do know that I have a serious health condition. Brain cancer is not something that you survive into your 70s and 80s! So, I take each moment like this and soak it up. What a great day we had!

This SimpleViewer gallery requires Macromedia Flash. Please open this post in your browser or get Macromedia Flash here.
This is a WPSimpleViewerGallery

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Happy Holidays!

Uncategorized No Comments »

I wanted to take time out during this busy time to wish everyone visiting Happy Holidays and a very Happy New Year! For me it was an interesting time. For one, I mentioned before that it was this time last year that I had the small focal seizure that eventually led to my diagnosis. Secondly, a lot of what we did was the same which of course was great! So everything coupled together was eerily similar.

We are also praying a lot right now for Rachael’s grandmother. She was in the hospital up until Sunday with severe anemia and after a lot of tests she has been diagnosed with colon cancer. She is 86 years old but is the most wonderful person. She experienced a stroke back 6 years ago and she just never complains about anything – a truly amazing person. So we could use your prayers for her – that she can be comforted by Him as she steps through this trial in her life and find peace and strength.

Our time with family was good and we hope that yours was as well. I don’t know what 2008 holds and as I mentioned in my post on the 19th, staying in today in key. However, I am upbeat! I still have a cold that is no doubt attributed to my chemo-induced immunosuppression but it is what it is. I can’t change that but there is a lot of strength I can draw from everyone around me and through prayer which has been a mainstay.

Happy Holidays!

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark
  • Page 1 of 2
  • 1
  • 2
  • >
   © 2010 Mark L. Miller, All Rights Reserved
   www.markmillermusic.org / Site Map