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Quote of the Day:

Change has a considerable psychological impact on the human mind. To the fearful it is threatening because it means that things may get worse. To the hopeful it is encouraging because things may get better. To the confident it is inspiring because the challenge exists to make things better.
- King Whitney Jr.

6 months…moving forward can be difficult.

Family, My Story, Support No Comments »

It is hard to believe that it has been just over 6 months since Mark’s passing and as I look back over this time of change, sadness and healing, not a day goes by where I don’t find myself thinking of he and mom and wishing we could see each other or at least talk.

Thinking about Mark and the legacy that he left behind – I am truly amazed at just how many lives Mark touched through his journey…this blog is perfect testament of this – with thousands of posts/comments, Mark’s life continues to help so many…myself included.

For now, I must be content with listening to his voice through his music and of course my memories.

I miss you my brother and look forward to seeing you again someday!

Shawn

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Memorial Service Details

Blog, Support 9 Comments »

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

*Reception immediately following (also located at Bayside).

In lieu of flowers, an education fund has been created for Aidan and Keegan. 

Donations may be mailed to: R W Baird & Co. Inc., 300 University Ave. #200, Sacramento, CA 95825 (payable to Rachael Miller FBO Aidan and Keegan Miller Education Fund).

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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

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Prayer Request for Rachael

Family, Physical Therapy, Support 5 Comments »

A quick prayer request for Rachael. She has thrown out her back somehow so we are both walking around like we are in our 80s! With Rachael out, things at the house are difficult. The most difficult is lifting Keegan in/out of the crib. For now, we have a small step ladder and taught him how to go to the third step, strtech a leg over the lowered crib rail and in and then back to get out again. We just pull the ladder away when we leave. What a trooper!

She is getting some treatment from a friend of ours who is a PT. I continue to wake up most nights with severe pain shooting from my shoulder down my bicep and into my forearm. Rachael is the key though. She really keeps our family sailing! So please pray for her healing!

God bless,

Mark

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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:

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More later.  God Bless!

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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.

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

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National Brain Tumor Society

Support 1 Comment »

nbts.jpgJust a real quick post – and I can’t believe I didn’t post this when it happened!  If you didn’t know about it, the National Brain Tumor Foundation, an organization that I volunteer through to assist other newly diagnosed brain tumor survivors who are in need of support, merged with the Brain Tumor Society, another first class organization.  The two organizations combined bring together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.  This merge was completed several months ago and the you can access their web site by visiting braintumor.org.

One of the great services on the site itself is a message board.  Register to use them.  You can network with other survivors.  This helps you – you are not unique.  Many feel alone in the beginning, I know I did.  After all, there are only 20,000 primary brain tumors diagnosed in the US annually – primary of course meaning it’s not a met. 

Take a look – a great resource.

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A New Day

Christianity, Inspiration, Support No Comments »

Just a quick post – I am in a much better place today.  I woke up during the night looking forward to work!  And, I do know that God is in the middle of this.  I appreciate the comments and emails very much.  I do know it’s normal and human to feel this way.  I screamed in the car after church on Sunday!  It actually felt good.  But, today I feel better.  It felt good to put on a suit and tie, dress shoes and head into my office – a great prank someone set up upon my arrival, etc. 

I have two appointments today – one with my neurologist to discuss my medication levels going back to the issue with Lamictal and the vertigo incident and the other with my neuro-oncologist to discuss to possibility of undergoing an Avastin infusion between now and when I start the vaccine which should be in the next week to two weeks.  However, this could be prudent given the wait time so that is our topic.

Again, thanks for all of the support.  It’s much appreciated…

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