Home

Quote of the Day:

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

At Peace

My Story, Support 20 Comments »

It is with profound sadness that I’m writing this post. Mark lost his battle with brain cancer Saturday night around midnight. He died peacefully in his sleep, surrounded by family. We will all remember Mark in our way, as he reached so many people in so many areas of his life. He was a father, son, husband, brother, musician, and friend. Many of us don’t know how we will go on without him, but our comfort is that we know where he is and who he is with.

His ultimate decline was quite rapid. A little over a month ago he had several emergency room visits that were seemingly unrelated, from flu-like symptoms to severe swelling in his hand. An MRI revealed that several new tumors had grown in less than two weeks. He was walking with a cane a little over two weeks ago, and then he was in a wheel chair. These last several days he was confined to his bed. We made the decision about three weeks ago to stop aggressive treatment and utilize hospice with comfort care. He was able to be at home with family and friends in that time without having to worry about hospital visits.

Mark’s first symptom was numbness in his left side over Christmas 2006. We initially thought it was a stroke. It was later revealed to be a Grade 3 brain tumor near his motor strip. In October 2008, it degenerated to a Grade 4 glioblastoma. Since the initial diagnosis Mark had two surgeries, a full course of radiation therapy, two radiosurgery treatments with GammaKnife, multiple courses of Temodar and Avastin, and the brain tumor vaccine DCVax.

Tragically, Mark’s mother Jo passed away on Sunday. His parents had been in town for several weeks to spend time with and care for Mark.  His mother had been in good health, and this was incredibly unexpected. Just as Mark was leaving us, Jo hugged her son, paid her final respects, and within minutes she was rushed to the hospital for what appeared to be stroke-like symptoms.  The CT scan revealed she suffered a massive brain bleed and lost consciousness in a matter of minutes.  It became apparent to the neurosurgeon, along with the neuro-radiologist that the bleed was inoperable and untreatable.  Jo passed away at 1:00 in the afternoon just thirteen hours after Mark lost his battle with cancer.

It is impossible to make any sense of this tragedy. Mark was just 42 and left behind two young children. Keegan just turned 3 and Aidan will be 8 in a month. It is natural to wonder for all of us where God is in these events. How can God allow a man to be taken with a wife and two children, and take his mother the very next day? I’m not sure there is an answer, but where I saw God the most was in Mark himself. Mark’s faith had been profoundly transformed over these last three and a half years, and he had become a man convinced of God’s love and grace, even more so than before he was diagnosed with a fatal brain tumor. And though he left us far too soon, when Mark’s time came, his faith brought him Home.  In the middle of these seemingly senseless losses, we can only take comfort in knowing that Mark and Jo are in heaven together, surrounded by God’s immeasurable glory, grace, and love.

I want to thank all of you who have loved and supported Mark and myself through this difficult time. I know he reached so many of you through this blog, and you all meant so much to him. He was posting just one week ago, typing with one hand on his iPhone when he could barely move. He wanted to share every bit of his experience with all of you. You have all become like his extended family, and it brought Mark tremendous comfort and joy that he was able to learn from and help so many of you. You will not be forgotten.

Goodbye Mark and Jo. We love you and miss you.

Mark’s Memorial Service will be:

Friday, July 23, 2010 @ 10:30 am.
Bayside Community Church (High School Building)
8171 Sierra College Blvd., Granite Bay, CA 95746

In lieu of flowers, an education fund for Aidan and Keegan is being created.  Details to follow.

Blessings,

Rachael

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Talking to Kids About Cancer

Family, My Story No Comments »

Chaysse. a regular reader here left a comment about how hard it is passing the kids along to others all the time – constant treatment.  This was in response to my post “Update” on the 26th.  I wanted to ellaborate further. 

The fact is, a brain tumor changes the lives of everyone around that person –  some changes of which can be very positive.  On the other hand, because of the demands placed on your time and schedule, we’ve had a lot of shuffling around of our children to grandparents and multiple sitters over the course of the last 3 years, particularly around critical events.  We feel bad about it, just as Charysse said, but for us we know that these are the steps we need to take at this time.  You can wonder where God is in this? Our lives feel out of control – driven by events outside of our control.   You start drowning.  And I watch Rachael sink sometimes.  Everyone deals with it including children, but in a completely different way.  For me, this is so important…

I remember that we’ve been through deep valleys and storms before and the sun came back out.  If I can drive Rachael to the hospital at midnight 2 weeks after my first brain surgery which resulted in an emergency c-section (Keegan’s birth) I can keep going.   If I can do 5 weeks of radiation on my lunch hour M-F and go back to work along with chemo and just roll  - I can do this.  If I can endure another surgery and 2 gamma knife treatments boosting my net radiation dose to 103 Gy – all of this and Rachael and I are still here with God by our sides – we know that lots of appointments is a small annoyance really!  I get down – we do – and I try to remember these things and what is GOOD in life. 

I’m here.  I can throw a nerf football to my son, sitting down!  

We can feel lonely and on an island and focus on the future, gloom and doom or stay in today and share that optimism with those around us.  That’s a challenge for me lately with chroic shoulder/rotator cuff problems – another annoyance in the grand scheme. 

We all have thought, “no one can understand what it’s like to feel this way, be diagnosed with something like this, to take these drugs (fill in the blank) - to have my life.” 

Oh but we can.  All to varying degrees.  No one in the world is alone. 

No question, this stinks!! And there is no denying the range of emotions felt, for everyone touched by this diagnosis. With children it’s even more difficult.  As adults we have so much empathy because they don’t fully understand why everything is happening.  There is such a fine balance between over-communicating and striking fear into a child about the illness vs simply talking at their level, mostly driven by their cues.

Children formulate ideas so differently.  I have learned the following.  These are only my personal views: 

  1. Beware of applying the complexity of my emotions and logic to my children.  For example, Aidan has asked me flat out, “Could you die from this dad?”  I told him yes but that we have great doctors and good medicine and right now dad is doing ok.  I asked him how he felt and he said it scared him.  We talked for a bit longer.  He took that and moved right on to another subject related to school.  There was the cue.  To my adult mind looking through his eyes, I’m terrified, full of anxiety, sad, etc and I could misplace those feelings by allowing them to lead me down a an unnecessary discussion about fear, for example when he may not feel any at all.  However after injecting my own fear into it all I will have certainly instilled some degree of fear in him.  All kids are different of course and with Aidan I think we have a good balance,  If my condition worsens, we talk about it.  Good thread for comments here…
  2. Follow the cues – let them lead.   I have found when the questions are answered and Aidan is satisfied he let’s me know as described above.   Same applies in raising questions.  Aidan and I have “talk time” every night.  It’s then that I simply check in and ask how he is and if there is anything important he needs to talk about.  He’s a great kid – he has been honest with me about “sneaking candy” during rest time in these moments!  He and I are very close.  The tough discussions happen at these times.  Questions like,”Will your tumor ever go away?”,   “You’ve been in the hospital 6 times (I’ve been counting), does that mean you will die sooner than other people?”, ”How long do you think you will live”?  Tough questions feom a 7-year old.  

Can you imagine had we not had this time and he didn’t feel he had an outlet??   To be left as a child with these kinds of questions to grapple with is what I believe would be the ultimate failing.  Rachael and I have done our best with God’s lead to provide a comfortable, trusting space for Aidan tolet it out and be as inquisitive as he finds necessary. 

It’s easier said than done.  Communication….Open Up…Follow-Up…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Temodar and Getaway

Medical Updates, Support 1 Comment »

My temodar treatment has been going well.  I have some nausea in the morning and use zofran for that but things are good.  More pressing is my left arm and shoulder. 

Essentially the muscles in my shoulder, bicep,  forearm and sometimes wrist/hand contract and tighten up involuntarily sometimes.  This just freezes it all up.  Because this has happened so many times, on top of seizures, a few falls and new lesions – the pain is terrible while under this tension.  I have an appointment later this month wiyj a nuerologist who injects Botox into the muscles in these cases to loosen them up.  Hopefully that will quell this pain.  I have another appointment next Monday for Avastin. 

IF you’re in the Sacramento, CA area, I’ll be speaking at UC Davis on Thursday night at 6:30pm at the brain tumor monthly meeting.  Use the contact form if you’d like information.

We were able to get away this weekend to Bodega Bay.  It was so nice!  Being on the coast withe wind in my face felt good since I havent been home to SoCal for 5 years.   Here are a few Pictures fron Bodega Bay:

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

More later.  God Bless!

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Cards for Tomorrow

Family, My Story 3 Comments »

We still pray daily for healing and we all pray for what we believe is the best plan in life for us.  However, no one really knows.  Do you?  I don’t.  What I do know is we all have purpose and because I am faced with this, my focus lately has been on finding ways to pass on memories and ideals to my family.  Videos for the boys will be great of course.  This is my first idea though and will be the gift that keeps giving.

I’ve not resigned myself to death here!  So don’t get the wrong idea.  I’ve dusted off my pants and am ready for whatever is next but what I have is now and I’m getting this done. 

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Safari West Slide Show

My Story, Travel 2 Comments »

As mentioned, we took a lot of photos and video when we went on our trip to Safari West in the Santa Rosa, CA. I found some time this weekend to bang ou the dvd that contaims the main video and also slideshow. I uploaded the slide show to YouTube but you can ut right here:

YouTube Preview Image

Big day tomorrow. 9am I pick 2 new foot bracecs to try at PT at 10am, followed by an appt w/GP then an MRI! Sheesh. Anything else to be addaed?

More to conm…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Keegan Seems Inspired

Inspiration, My Story 2 Comments »

Because I’m home and Keegan is not in school quite yet, I have a lot of opportinities to more deeply discover his  funny and joyful personality.  He is really drawn into music which is cool.  This video is funny and at times he is so focused then he moves to excitement, much as the piece does.  This is the piece I posted a few days ago – Jon Schmidt and the cellist.

 YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Conversation with Keegan

Family, My Story No Comments »

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

YouTube Preview Image

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Laker Game

My Story, Support 3 Comments »

2010-03-16 21-28 009I had a great night tonite.  My good friend Jake and I went to see the LA Lakers vs the Sac Kings.  I’m a Laker fan through and through going back to McAdoo, Wilkes, Magic, Worthy and Kareem. 

We had some VIP access for dinner and dessert and were on the Laker locker room side of the arena which was great.   The 3rd photo is of Pau Gasol stretching in the tunnel just before the Lakers took the floor.  It was just about having fun…

Here’s a few pictures.

2010-03-16 19-48 0032010-03-16 19-44 002

2010-03-16 20-02 0062010-03-16 19-53 0042010-03-16 20-30 008

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark
   © 2010 Mark L. Miller, All Rights Reserved
   www.markmillermusic.org / Site Map