Quote of the Day:

Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.
- Maya Angelou

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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Current Status

Blog, Medical Updates 16 Comments »

I know it’s been a while since Mark’s last post and we wanted to keep everyone up to date on his status. 

Mark was discharged from the hospital on July 2nd and we are all making adjustments to a new routine. 

As Mark mentioned in one of his earlier posts, after a lot of thought and prayer, we made the decision to retain at-home hospice services.  With the last MRI report revealing more new lesions and enhancement in such a short span of time, it made the decision to utilize hospice a little bit easier.  

Mark’s stability has been a growing concern in that the use of a cane was not giving him enough support.  He is now using a wheelchair to help him get around the home safely.  We are fairly home-bound due to his mobility issues, along with the tumor progression and how that limits him.  However, we have been enjoying friends and family visiting, helping and loving on us through this challenge.  His parents, who spend their summers in Oregon, have been here the last several weeks and plan to stay on as they offer tremendous support to not just Mark, but to our entire family.  In addition, Mark’s daughter Lauren, who lives in Southern California, was able to take a leave of absence from her job and has been staying with us, helping with Mark and the boys, running countless errands, doing lots of household chores and saying yes to every favor we ask of her! 

While we wouldn’t have wished for this journey ourselves, the outpouring of support from loved ones, family, friends, and even people who barely know us have comforted us beyond words, providing critical reminders that we are not alone on this path.  No, it isn’t what we would’ve chosen, but coming to a place of acceptance and the peace that brings with it is an immense blessing I couldn’t have foreseen.   

We can’t thank all of you enough for your continuous love, support and prayers. 

All our love,

Rachael (on behalf of Mark)

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Enjoying Time with Family

Christianity, Complications, Medical Updates, Medications 7 Comments »

Well!, we made the move to palliative care beginning this week so visiitiing is limited and will be coordinated w/my wife. If you know Rachael just call or Email. I will have other contact info here soon.

Medically, I’m very comfortable!! I had a seizure abd apparatently the left side of my body was as firm as a board – a seizure, Enjoying family and friends!!

Her’s to life!!!

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Medical Update

Complications, Medical Updates, Side Effects 25 Comments »

Long time no blog post! Well, I’ve been busy with more challenges so I’m going to do my best to share the latest developments regarding my recent health setbacks. I may not have correct dates, etc. correct but they aren’t important and my apologies if some of the info is redundant with the content in a few previous posts but I’m winging it. :-)

I fell at home on Tuesday the 15th and really smacked one of my ribs pretty good as they hit the edge of the desk in our home office. I’ve been experiencing some staggering and other issues that can all be traced to tumor growth, brain swelling and new started having some slurred speech too which has gotten much better now that I’ve started steroids to reduce brain swelling. This MRI showed growth and brain swelling (edema)

I had another MRI last Sunday, June 28th. (just 11 days from the previous scan).

The report was difficult to read – once was enough. Four new lesions were discovered. This has led us to a decision to stop treatment and bring in hospice. My life has evolved into what would now be futile attempts to treat a disease that has run its course into a life. Many of my days have been spent, lately, in PT, hospitals, labs, etc

My body and prayer is telling me the fight is done and its time to shed myself in of this fight after three years, 12 or so rounds of chemo , the experimental DCVax treatment that gave me 10 months of recurrence-free living, 2 brain surgeries, multiple recurrence 2 gamma knife treatments, etc.

It’s been a tough 3 years – options have run out but I’m ok and am at peace with my entire situation. It’s run its course. It’s time to just be comfortable.

The fact is, I’m going to heaven soon where there is no pain, sorrow or grief- only perfection, only eternal joy, happiness and as my son Aidan said the other night I will be able to do things like throw the ball to Dakota, our black lab we had to put down a few years ago. Oh and he wanted to know if I’d leave iPhone behind for him. LOL!!!

From a medical standpoint, I certainly will not look back with any regret that I didn’t seek out and utilize all treatments that God has made available to man. The only treatments I steered away from were those that would result in complete paralysis of the left side of my body or harsh chemotherapy treatments, waste away and my appearance so drastically that I would be a shell of myself. I didn’t want my kids to witness that nor was I willing to beat my body up like this. It’s a very personal decision.

From a medical perspective my doctors projection say 2-4 months but only the Lord knows. Stats are stats – I’ve written about how aggressive this disease can be.

The boys are very resilient. I’ve had some difficult discussions w/Aidan lately, but he seems to have an understanding of where I will be, which is an immense comfort.

Ok I get emotional just writing. Discharged today! Can’t wait!

One day at at at time… enjoying my family each and every day and praying that the kids and Rachael will be given the strength and peace to walk through the final steps of this journey knowing that they have the love of af of God and that for Rachael that she isn’t distracted with future issues such as finances, getting along later, impact on the kids. etc. These things will all come together.

Hebrews 11:1

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Hospital Saga

Complications, Medical Updates 7 Comments »

Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

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Back to ER

Chemotherapy, Complications No Comments »

Back at ER. I woke up this AM to find my left hand extremely swollen. This presents the threat of blood clots so I will likely have an ultrasound of my hand. More challenges – where they stop no one knows. But as life throws challenges at is we xontinue to solde problems, obw T. More llatee.

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