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

Subscribe by Email RSS Subscription

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 Email RSS Subscription

I hope everyone is fighting the good fight and pressing on!

As difficult as cancer can be in so many ways, its hard to see how anything positive can possibly be yielded by such a monster. But there are gifts, and I’ve written about those many times. Lately though, I’ve had a difficult time eating. Eating and ensuring I have enough fluids in my system so my kidneys are not working overtime is essential. If you are on Avastin your fluid intake must be increased significantly.

All of you, caregivers witnessing this aspect of treatment and those of you experiencing it, know the toll it can take on the body. I have felt weak, tired, and sometimes just tired of feeling tired! This cycle is hard. So what pulls us out of the vicious cycle? For me it has to be divine intervention (prayer/meditation) and trying to focus on what is good in life. How blessed we are and have been. I’ve written about simple gratitude lists. In the end, for me it can be as simple as that. It’s not about stuff, position, status, who you know, and the list goes on. We become much more acutely aware of what is truly important in our lives and more appreciative.

Second, I start digging for inspiration. I have to go into action even if its on my own. Other people can’t do it for you. It is vital to have support! But I also know that sometimes, even when I’m down I have to walk. So inspiration…

Case in point – I happened to remember a few inspirational discussions/speeches by the late, former White House Press Secretary Tony Snow. You may recall he battled colon cancer until his death in 2008.

I could not come remotely close to expressing in words what I’m going to share with you below when Chritianity Today approached him back in 2007. I think most of us have been through and shared many of the thoughts, questions and ideals that Tony describes but he laid it out so eloquently I had to share it.

This picked me up today. I hope you find it as inspirational as I do!
______

Blessings arrive in unexpected packages—in my case, cancer.

Those of us with potentially fatal diseases—and there are millions in America today—find ourselves in the odd position of coping with our mortality while trying to fathom God’s will. Although it would be the height of presumption to declare with confidence What It All Means, Scripture provides powerful hints and consolations.

The first is that we shouldn’t spend too much time trying to answer the why questions: Why me? Why must people suffer? Why can’t someone else get sick? We can’t answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer.

I don’t know why I have cancer, and I don’t much care. It is what it is—a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out.

But despite this—because of it—God offers the possibility of salvation and grace. We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face.

Second, we need to get past the anxiety. The mere thought of dying can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere.

To regain footing, remember that we were born not into death, but into life—and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many nonbelieving hearts—an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live—fully, richly, exuberantly—no matter how their days may be numbered.

Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease—smooth, even trails as far as the eye can see—but God likes to go off-road. He provokes us with twists and turns. He places us in predicaments that seem to defy our endurance and comprehension—and yet don’t. By his love and grace, we persevere. The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise.

‘You Have Been Called’

Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet; a loved one holds your hand at the side. “It’s cancer,” the healer announces.

The natural reaction is to turn to God and ask him to serve as a cosmic Santa. “Dear God, make it all go away. Make everything simpler.” But another voice whispers: “You have been called.” Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter—and has dragged into insignificance the banal concerns that occupy our “normal time.”

There’s another kind of response, although usually short-lived—an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tinny, and placed before us the challenge of important questions.

The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing though the known world and contemplating trips to what must have seemed the antipodes (Spain), shaking the dust from his sandals, worrying not about tomorrow, but only about the moment.

There’s nothing wilder than a life of humble virtue—for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do.

Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf.

We get repeated chances to learn that life is not about us—that we acquire purpose and satisfaction by sharing in God’s love for others. Sickness gets us partway there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two people’s worries and fears.

“Learning How to Live”

Most of us have watched friends as they drifted toward God’s arms not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love.

I sat by my best friend’s bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was a humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. “I’m going to try to beat [this cancer],” he told me several months before he died. “But if I don’t, I’ll see you on the other side.”

His gift was to remind everyone around him that even though God doesn’t promise us tomorrow, he does promise us eternity—filled with life and love we cannot comprehend—and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms.

Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don’t matter so that we might devote our remaining days to things that do?

When our faith flags, He throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it.

It is hard to describe, but there are times when suddenly the hairs on the back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know: Others have chosen, when talking to the Author of all creation, to lift us up—to speak of us!

This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God.

What is man that Thou art mindful of him? We don’t know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us, each and every day, lies in the same safe and impregnable place—in the hollow of God’s hand.

- Tony Snow

Subscribe by Email RSS Subscription

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 Email RSS Subscription

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

Subscribe by Email RSS Subscription

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. 

Click here to view the embedded video.

Subscribe by Email RSS Subscription

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:

Click here to view the embedded video.

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 Email RSS Subscription

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.

Click here to view the embedded video.

Subscribe by Email RSS Subscription

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

Click here to view the embedded video.

Subscribe by Email RSS Subscription

Great info from carepages. Some of it is really common sense but a good reminder for all of us traveling with cancer.

Traveling w/Cancer

Whether the cancer patient is an adult or a child, traveling takes some extra planning, but unless your doctor has ruled it out, taking a trip shouldn’t be impossible. Hard and fast rules about cancer and travel will vary because every cancer patient has unique needs. A cancer patient who is between treatments will have different concerns than the one who has completed all cancer treatment, just as someone who has had recent surgery may have to take precautions that are different than someone whose surgery is in the past.

Cancer and Travel: First Stop — Doctor’s Office

Start planning your trip by discussing any possible travel restrictions with the cancer patient’s medical team. Make sure that your travel dates will not interfere with scheduled chemotherapy, radiation therapy, or surgery. The oncologist can weigh in on the best time for travel in relation to any upcoming cancer treatment.

This is especially true when the cancer patient is a child. Terri Ades, DNP (doctor of nursing practice), the director of cancer information for the American Cancer Society, says that involving a child’s oncologist or oncology nurse when making plans for a child with cancer will help you select the trip dates, location, mode of travel, and activities that will work best for the child. For example, taking a child who is immuno-suppressed or at risk for infection on a trip where there are large crowds might not be the best choice. Most cancer patients are also advised to avoid travel to developing countries for the same reason, especially if the patient’s immunity is compromised by chemotherapy, for instance. In some cases, travel may be considered safe, but the doctor may recommend taking prescription antibiotics along on the trip in case the cancer patient contracts an infection.

Some cancer patients are advised to avoid air travel altogether due to the pressure changes that occur during flight and the possible need for supplemental oxygen. Some forms of cancer can increase a patient’s risk for developing blood clots, called deep venous thrombosis or DVT, especially during long airplane or even car trips.
Your doctor may suggest avoiding travel when your blood counts are likely to be low, such as in the weeks following chemotherapy. If you must travel during such a time frame, Gregory Plautz, MD, chairman of pediatric hematology and oncology at Cleveland Clinic Children’s Hospital in Ohio, urges families to discuss with the child’s doctor ahead of time what likely side effects will occur during the trip. For example, says Dr. Plautz, if the blood counts are likely to drop significantly, the family should know what precautions to take regarding fevers, wearing a protective face mask in airports or other crowded spots, or participating in vigorous recreational activities that might cause bruising or bleeding.

The Cancer and Travel Preparedness List

Proper planning means being prepared to manage cancer treatment or cancer treatment side effects while away from home.

Medication Information

Obtain and carry with you a letter from your doctor or pharmacist listing all prescription medications being taken for cancer treatment. This letter should have a description of each drug, including brand and generic names, dosages, number of pills you take each day, and the need for any refills while traveling. If you have a tissue expander or any implanted metal device, such as an intravenous access port, you should also have a letter from your surgeon describing it (in case questions arise at metal detectors and security screenings). Your doctor’s address and telephone number should also be listed.

If you’re going to a foreign destination, have the medical information translated into the language of that country and learn key foreign words and phrases to describe your cancer treatment in an emergency situation. Leave a copy of all this information plus a detailed itinerary of your trip with a close friend or relative who could fax it to you in an emergency.

Ensure that your medication is legal in the country you are visiting — this may require several phone calls or correspondence with an embassy or consulate office. Restrictions regarding what you can take out of one country and into another vary greatly. The majority of those restrictions involve controlled substances such as morphine and codeine, as well as drugs that are delivered by injection.

In addition to planning ahead for scheduled medications, Plautz says families should also discuss with their child’s doctors in advance any potentially needed medications, such as anti-nausea or antibiotic medicines. 

Medical Care at your Destination

Before you leave home, find out where to get emergency medical care, if necessary, at your destination, including the local emergency services, phone numbers, and the number of the local hospital. Ask your doctor if she can recommend the best medical facility for you. Know where you can get prescription refills or replacements at your destination, should your medications or supplies be lost or damaged. If you need oxygen regularly, arrange to have a supply where you are staying.

If the patient requires an evaluation or a treatment by a doctor while at a travel destination, coordinate the visit in advance, and have contact information for your home doctor in case the doctor at your destination needs to consult with him.

Insurance Clearance

Discuss your medical condition with your travel insurer and tour operator, and ask about any restrictions you should consider before booking. Ask your health insurance provider about any limitations or procedures you must follow to use your insurance at your travel destination. Some travel insurance programs may help cover medical expenses while you’re traveling.

Cancer and Travel: Packing Prescriptions

Be especially careful about packing medication. Carrie Strehlau, spokesperson for St. Jude’s Children’s Research Hospital in Memphis, offers these tips for traveling with a child who is undergoing cancer treatment — sound advice for an adult with cancer as well:

• Bring more of your child’s medicines than you think you will need, just in case your stay becomes longer than planned.
• All medications should be kept in their original, childproof containers.
• If traveling by car, do not store medication in the glove compartment or trunk. These areas can become hot and humid, which can alter how well some medicines work.
• Keep all medications with you in a carry-on bag when traveling by train, plane, or bus. Your child may need a dose during travel. If your luggage gets lost, you could be without the medication for several days.
• Take along a mask for your child. Although wearing a facemask is not always comfortable for children, it is essential for helping keep germs away.
• When traveling to a warm climate, remember that certain medications can increase the skin’s sensitivity to the sun, and apply sunscreen with an SPF of at least 30.
• If your child has a central line, be sure to bring all of the proper materials needed to keep on a consistent cleaning schedule.

Cancer and Travel: Ready for Take-Off

Cancer places additional demands on travelers — these tips will make the trip go more smoothly for everyone:

• If the cancer patient is a child, consider his comfort and pleasure during the vacation. Take along a favorite pillow, comfortable caps for a bald head, and toys, games, and music for distraction and relaxation during the trip, says Dr. Ades.
• Remember to follow basic guidelines for smart travel. Get any recommended vaccinations before you go, and eat only well-prepared food at reputable establishments once you get there. In any country where water quality is suspect, drink only bottled water, and avoid ice in drinks.
• Allow extra time at the airport, in case of delays going through security checks or managing carry-on equipment. Consider other conveniences to ease discomfort. For instance, will a wheelchair at the airport make the trip less exhausting on the patient?

Finally, before you leave, make an appointment with the home-based doctor for a post-travel check-up to discuss any unusual symptoms or discomfort experienced during the trip. You may not need to keep it, but you’ll have peace of mind knowing it’s on the calendar.

Cheers,

Subscribe by Email RSS Subscription