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Proton Radiation

Unfortunately, odds are that you will know someone diagnosed with cancer. If radiation is a treatment option, please let him or her know about proton therapy. Since this is one of the few advances to potentially reduce the damage wrought by conventional cancer treatment, I want to tell anyone who will take or make the time to listen.

According to the American Brain Tumor Association, “Proton therapy uses accelerated subatomic particles called protons (energized particles that have a positive charge) to send a high level of energy directly to the tumor site through a magnetically-guided beam. In proton therapy, energy of the protons – along with the depth of penetration – can be conformed to match the unique size and shape of each tumor. This helps to minimize the destruction of surrounding healthy tissue and organs and theoretically decreases acute and long- term side effects, such as neurocognitive deficits (e.g., short-term memory problems) and hypopituitarism (i.e., hormonal imbalances). This benefit is particularly important for young children who are still developing. Less damage to healthy tissue means potentially reducing the development and intelligence changes that can occur with conventional radiation. Additionally, studies show that proton therapy can also result in fewer late effects, including secondary tumors from treatment, a major concern among physicians and families when a child – especially a very young child – is undergoing radiation treatment.”

While proton therapy has been used to treat brain tumors for nearly 60 years, it has only recently been approved for use in the United States. We are fortunate to have had access to one of the few facilities administering this technology, the Chicago Proton Center. http://www.chicagoprotoncenter.com/

Long-term effects of cancer treatment are one of the prices paid for a continued chance at life. As a family, we weighed the risks, and we took them. We do not know what the future holds- no one- not even the healthiest of individuals- can ever be sure of how many tomorrow’s they will see.

A year ago, I documented a day at the Proton Center on Facebook:

“Mondays are always jam-packed for Abram: oncology doc, port access, chemo 1, chemo 2, neuro-oncology doc, and then proton treatment. His port is already accessed so the hard part is over. It will be a long day, and counts are down so I will be giving him a shot later. But, the smiles remain :)”

At times over the past year, we have felt overwhelmed with the numerous decisions included with Abraham’s treatment. Many can offer advice, but ultimately, everyone must gather as much information as possible (in a timely fashion) and choose what is best for him or her.

We made promises to return to the Proton Center and CDH after treatment was complete. With school starting next week, today was our chance to go visit. My sister picked us up, drove us up, and we made the rounds!

Here’s our first and favorite friend who showed us the chemotherapy ropes: Nurse Jenny!

So much love.

Next we stopped at our home away from home, The Ronald McDonald House.

Our final stop was at the only restaurant Abraham enjoyed during our eight-week stay, Gnarly Knots.

http://www.gnarlyknots.com/

If someone would have told me that I would return to where some of our hardest days were spent, I would doubt it being high on my end-of-summer “to do list.” But a large part of the tenacity demanded by this horrific disease took root in these hospitals and cancer centers. It was under the care and guidance of sweet souls like Nurse Jenny where our strength and hope grew. They taught us that if we watched and learned and showed up for the fight, we were tough enough to make it through every round. And we did.

Peace, hope, and strength…

 Snoopy Day

“I don’t know the meaning of life. I don’t know why we are here. I think life is full of anxieties and fears and tears. It has a lot of grief in it, and it can be very grim. And I do not want to be the one who tries to tell somebody else what life is all about. To me it’s a complete mystery.”
-Charles M. Schulz, Charles M. Schulz: Conversations

Pretty dark thoughts for a beloved cartoonist, isn’t it? Perhaps Schulz’s ability to acknowledge the grimness of grief while maintaining a sense of humor is one of the reasons he has remained relevant and inspirational for nearly seventy years.

Yesterday, I struggled amid minor setbacks. Abraham’s legs were giving him trouble, so we needed the wheelchair to get him around the hospital. It had been months since he had needed the chair. Next week, we are hoping he will return to school full time. I started to panic that he wouldn’t be ready. I worried that all the therapy and hard work still wouldn’t be enough to get him back with his friends on a regular basis. Then I took a deep breath, and replayed the positives in my head.

First and foremost, Abraham is happy. Second, labs yesterday were all heading in the right direction, and the thyroid panel was entirely within the normal range. Third, although the nausea did get the better of him before the visit was through, we made it home safely, and everyone slept through the night.

Once yesterday’s anxieties were back in check after counting a few blessings and getting a good night’s sleep, today blossomed. Abraham is a happy old soul who loves all things Peanuts. He and Grandma Annette have been planning a chemotherapy is over/end of summer shindig, but none of the days seemed quite right.

Yesterday was the last of his summertime hospital appointments, plus this week is Snoopy’s birthday, hence, Snoopy Day! Before we even entered Grandma’s house, Snoopy was there to greet us at the front door:


We dined on Snoopy’s favorite meal: root beer and pizza. And of course, there was cake!

I’m not sure if daily fears and occasional tears make me weak or make me human. On the one hand, I pride myself on keeping the faith, but on the other, I know the universe will do what it must. The balance between thinking positive thoughts while remaining ready to handle negatives that inevitably pop up is perhaps my chief personal dilemma. As I supplement my soul-search through blogging, I, too, don’t want to be one who tries to tell others what life is all about. My intention is to share our version of life’s mysteries with honesty and humor in hopes that readers might occasionally smile along 🙂

Port in a Storm

Abram’s chemotherapy graduation shirt couldn’t be more appropriate today. He endured a lengthy, ROUGH and painful port access.

 Accessing the port in his chest is always tricky. During the port placement surgery, the line kinked, and the doctor was forced to set it in a little deeper and at a slightly different angle. Sometimes, that makes for a troublesome access with repeated pokes to find the “sweet spot.” Today was one of those sometimes. With all of the surgeries and treatments and tests the little guy has been through, the port continues to be one of his hardest hurdles.

On a brighter side, we love Lurie Children’s Hospital; they have taken care of Abraham since our terrifying emergency room run in May 2014. The staff is talented, tireless and kind. Today was no different. The skilled nurses dealt with the stubborn port, child life kept the music and jokes coming while I held his little hand.

Currently, Abraham requires extensive monthly labs and a two-hour antibiotic infusion. The infusion causes stomach upset and nausea. He is currently fighting that back, but I can see he’s struggling. My sister is with us, and the little champ is bravely taking care of his business here in the infusion clinic.

Today, I should have been in my 8th grade classroom, sweating in the heat with my fellow staff and 100+ new students beginning the 2016-17 school year. Instead, I am in Chicago while Abraham gets the care he needs. Even as I type these words, I am certain this is where I should be-helping my son get better.

Please keep the positive thoughts headed our way as the day unfolds.

Peace, love and light…

Sunday Light

I don’t wish to set a precedent of blogging on the weekend, but I needed to make my 11 followers (thanks folks) aware of my intention for a weekday blog. Even with my limited internet access, I should be able to put something together three to five times per week.  The behavioral educator in me knows accountability is vital for success, so I’m putting my personal goal out there.

Wish us luck, and please share and like as you see fit. Seeing the numbers grow and the international regions spread creates quite a family celebration!

Our next achievement will be 1000 views.

Peace, love and light, all…

The Wall

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Shout out to the teachers ready to begin anew 2016-17 style. May the schoolyear bring growth and wisdom to all you touch.

Abraham saw the above image (from August 2013) for tonight’s blog and commented that he wondered how long it would be until his hair looked that great again. I didn’t have an answer for him.

Also today, Facebook time hopped me to the following image from a year ago when my friend, Lori, shaved around the Babe’s radiated, tender, swollen noggin with its various hardware and scars. Look at that proud posture despite baldness and illness. He’s a champ.

Abraham has been through a lot since that photo was taken. He’s thinner, more tired, and less flexible. In addition, his bones ache, his hearing has deteriorated significantly, and his blood is still trying to recover. I wanted to take a comparative photo in front of the same Rose of Sharon bush, but Abraham’s legs were too tender to walk him there today. Plus, he has a trip to the city for labs and a two-hour IV antibiotic infusion at clinic tomorrow, so I didn’t push.

Instead, we focused on manual dexterity. I started him off by opening the bag, and the rest was all him. He allowed me one peek at the fifth step; and then here, upon completion:


It’s rewarding to follow directions sometimes. Like with Legos. And sometimes, we’re too tired to take a single step. Most days are a little bit of both.

My husband and I try to be decent examples for our sons by showing them how to be patient and kind. I figure, if life is a test and a complex question gets asked, isn’t it easier to answer when an example is shown first? Same concept. We shouldn’t try to tell others how they should “be.” We should instead live our lives as fine examples.

Take it Now

“Poetry is a way of taking life by the throat.” – Robert Frost

In writing, I feel less can definitely be more. But for now, I’m not counting words. Whether you appreciate lyrical style or not, the ability to grab a big idea and hand it over in simple pieces is gold.

One basic caution that must be raised before self discovery can happen is that seizing today by the throat while disregarding the future comes at a cost. The choices we make, or don’t make, affect our tomorrow’s. That is why we cannot wait until the “right time” to work on ourselves. Some won’t be here tomorrow, and they will lose the option to care for themselves and love those around them a little while more.

I’m all about hope, but we can’t simply hope to feel better; we must do the work. Sometimes, we think it’s smart to wait out a life storm until the wind stops or the clouds clear. Unfortunately, there’s no hard guarantee they ever will. It’s smarter to push through the darkness rather than sit in the rain and wonder why we are still getting wet.

My parents are deceased. My sister said to me today that Mom and Dad would be proud of me this week, and that Dad would have forced me to use some of his original poetry in my blog. Smiling at how right she was, I composed these lines in his memory:

THE WELLNESS SEASON

I placed my hope at season’s end

early in the spring.

When winter fell I realized

hope was lost again.

If all the seasons

Were as one

Perhaps then hope could spring

In frozen hearts and barren parts

Of our identities.

The Power of Fear

“Fear has its use, but cowardice has none.” -Mahatma Gandhi

Yesterday I was scared- repeatedly. But sometimes we need to feel as if all could be lost in order to comprehend that life is valuable. That is the power of fear.

The support for my first blog startled me. I had hoped it would read as genuine, but the responses in support of my writing surpassed my expectations and warmed my soul. The rush of claiming a domain name yesterday was also a fast high. Even though the fear of the unknown is sticky with pain, sometimes  a swift kick of gruesome reality can quickly wake us up.  As a result of a yesterday filled with security breaches, reckless drivers, and new exploits, today I discovered how fear can be “wella-useful.” See what I did there? Wellness remained my goal.

Between flickers of panic at the newness of blogging, and the extreme frustration with unreliable Internet, I am lit by the flashes of excitement that are slowly filling my half-full teacher’s heart. I have talked about publishing a blog for years, and now that I’ve pulled the trigger on its genesis, I can feel my identity returning. You can take the teacher out of the classroom, but the innate call to vocation remains.

Even with deep roots in education, I don’t believe all questions are supposed to be answered. Often, I look to nature to figure out the basics of getting through tough times. For instance, think about the fear response and recovery time of a healthy dog. Obviously a dog’s brain is wired to react when it is attacked, and unless it’s been abused or conditioned in some unnatural way, once the immediate threat has passed, the canine instinct returns to “business as usual” and the fear response ends. I’ve watched my 12-year-old son, Tommy, repeatedly stumble (he’s not quite mastered those long legs yet) over our aging German Shepherd, Ivy, and sometimes, it causes her accidental pain. Seconds later, that same sweet dog can be seen stealing a kiss from him. For people? Our recovery takes longer.

1220  Few people are genuinely dauntless; I know I’m not. I’m afraid at some point every day. But I’ve come to realize that even though not everyone is built to play the fear game, participation is not optional. Fear doesn’t require our consent.

Fear also tends to fester.  If something frightened us to the core, even for a moment, the hesitancy to try again lingers. When humans are scared, pulses rise, eyes dilate, and the body becomes CHARGED. Our instinctive response gets muddied with our humanity, but the basic choice is to retreat or to advance. One difference between humans and wild animals  is how long that feeling of fear lingers in our mind and influences our actions days, months or years after our scare. Last night, Abraham was feeling “off” and had a small headache (don’t worry; he seems better today). My conditioned fear response kicked in, and I had to unknot my stomach as I rinsed supper dishes at the sink. I tried to push away the dread that he could be getting “the big sick” (as Abraham has coined his cancer). I couldn’t control the situation and make his pain go away, but I tried repeating  to myself, “His face looks flushed, I’m sure it’s just a cold.” Eventually, I was able to function again, but the paranoid residue stayed with me. It wasn’t until I turned off the tomorrow “what if’s” and focused on a night of snuggles that I was able to unwind enough to sleep. I doubt dogs with cancer worry about growing sicker. They are too focused on living and playing, and loving their human. We can learn a lot from our pets.

Don’t get me wrong, I know choosing to be brave is not just about facing fears like an animal or tackling demons like a slayer. It’s about recognizing and accepting that the alarm of distress will sound repeatedly in our world; but sometimes, that warning can be a lifesaver.

So, a blog it is…

Everyone has battles to fight. Some are hidden well, while others are marked blatantly with scars and loss. Personal struggles can deplete our will and our happiness and our health; but in most cases, there is at least some small thing that remains in our life for which we can be grateful for. I may not always feel balanced and sure, but I can always find some small moment to appreciate or some new way to be well.

Wellness by definition is not a goal; it is a process. And although the tenets of emotional, physical, social, vocational, intellectual and spiritual awareness create the framework for a model of wellness; each person’s goal is unique, and the paths can vary greatly.  I am all about finding workable routes on those individualized paths. For 25 years, no matter my occupation, I have aspired to help others learn on different levels.  I believe I was born a teacher, but I have officially taught Behavioral Health, Wellness, Nutrition, Yoga, Communications, Language Arts and Aromatherapy.  My current area of study is Integrative Health.

Last week, life led my career out of a beloved, concrete-block classroom and back to my humble home with my husband and two sons.  Keeping a job while caring for my youngest, medically fragile child was no longer in my family’s best interest. For two years, I have cared for my eight-year-old son, Abraham, as he battled brain cancer.  He was diagnosed at six during his final week of kindergarten.  Up until that point, he was a healthy, strong and active child. Then our world shifted into survival mode. As Abraham transitions to recovery after two years of treatments which included five brain surgeries, six weeks of a chemo-radiation combo, and then straight up chemotherapy for an additional nine months, I am recovering, too. His prognosis is still unclear, but with each stable three-month MRI, we celebrate. This blog is my outlet to simultaneously deal with my “new normal” while building my own version of a positive, happy existence.

I hope others will benefit from the intended transparency of my family’s journey, too.  Even though the online haters will bother me, the technology will challenge me, and my time to work still comes in waves, I want to share our story.

I may always prefer pencils to pixels, but I try to live in the modern world where some of today’s best helpers write blogs.  I may not have a classroom anymore, but I have a computer, basic internet service, and a desire to continue educating others on ways to find harmony amid the chaos of our singular existence.

So, a blog it is.

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