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A Quality Life

When asked how Abram is doing, my standard reply is, “He’s doing well!” My hearty response is not meant to be dismissive or overzealous, but more of a genuine attempt to encompass the two vital realities: he is alive and he is happy:)

With today’s results we were blessed to hear that Abraham’s brain scans are stable. The new aspect that has now worked its way in is that side effects of radiation are starting to show in regards to his endocrine system. That means the potential for new tests, new surgeries, new therapies, and new unknowns are once again on our plate. This isn’t a life and death situation. There are ways to manage these new disruptions. Nonetheless, it’s not a reality one would willingly choose to travel with a child.

This past week was rife with scheduling errors, delays, and unpleasant strangers. Yet, my standard answer still applies. “We are good.” It was a positive week because the ending is a happy one with the four of us safe, strong, and together.

Normal joys still rung true. Tommy was confirmed last week in Saint Anne, and he graduated from Kankakee Junior High earlier today. Abraham is finishing a fantastic fourth-grade year in the gifted program at King. So yes, we are blessed and we are grateful!

But how do I really feel when the pure joy of stable scans is marred by an annoying, life-altering side effect of cancer treatment? Do I really just shift gears from hospital to home without a hitch? Of course not.

I think the best perspective comes when I step back and place what I feel personally alongside what I’ve gathered from others.

Dealing with ongoing critical illness in a child is difficult to explain. I lost my mother, grandmother, and several aunts and uncles to cancer. None of those tragedies prepared me for the helplessness I feel battling The Big Sick with my baby boy.

Some pediatric concerns are obvious. Children are smaller which increases the difficulty in everything from basic lab draws to extensive surgeries. Tiny humans haven’t the words and wherewithal to choose between the endless medical options presented day after day in clinics and hospitals. Kids often miss many months of school which can create academic and social struggles. Abraham was hospitalized nearly all of second grade. This year there were fewer but still significant absences.

Pediatric cancer patients specifically are sorely underrepresented in clinical trials that could ultimately offer our sons and daughters safer treatments, clearer results, simpler childhoods, and longer lives. That disheartening piece alone can give me fits on even the easiest of days.

And of course, there’s the pressing role of medical guardian to acknowledge. Life and death decisions can arise suddenly and leave a mournful trail of lifelong doubt for any parent forced to select from a handful of gruesome options. It’s difficult enough to imagine if and how we would fight for our own lives when threatening situations arise. In my experience, it is impossible to predict what we will do to save a child. I’ve made choices for Babe I would not have chosen for myself. It’s a wicked double standard, but I am not ashamed to admit that I have always sought more for my children than I’ve allowed for myself.

Seeing the list of potential side effects unravel into actual side effects over the years remains a shock. The doctors warned us verbally and in writing about what could happen, but medical disclaimers can never wholly disclose the challenges that come with survivorship. That is one list of commonalities that apply to cancer patients regardless of age: there will likely be pain, fear, fatigue, brain fog, memory loss, toxicity, estrangement, anxiety, depression, and quite often- grief.

When I start to spiral, my husband reminds me that we achieved our goal. We saved our son’s life. His simple but blunt words always shift my attitude to where it needs to be. Each day we have is a treasure and my moaning in despair or regret would be a terrible waste of precious time.

Abram is now two years post-treatment, and even though doctors, nurses and well-meaning strangers would tell my bald child “not to worry it will all grow back after treatment” his has not. Radiation makes him overheat quickly on warm, sunny days at recess. His blood counts are still recovering. His physical and occupational therapy continues as he slowly rehabilitates his hips, legs, and hands. Surgery scars mark him as different. He tires easier than other ten-year-olds. Yet, those same trials have simultaneously built a boy who cares deeply, forgives quickly and expresses empathy in a manner well beyond his years. That is why, no matter the struggle, no matter the result, we are grateful for life and respectful of love.

Looking back at the start of cancer treatment options four years ago, one recurring theme was “quality of life”.

We knew Abraham had a rare and serious condition, but that did not make the decisions in regards to his treatment plan any easier. Before his first brain surgery my thoughts were not strictly of whether or not he would survive. My bigger fear was that he would return to us alive but without his funny, kind, and compassionate outlook. Thankfully, my prayers were answered then and continue to grace us now.

None of us know how our lives will go. Our realities and priorities can change quickly. Sadly, many of us are trapped by things we cannot control. What I have found is that despite the pain and loss that weaves its way into our personal narrative, we can always choose our mood and tone.

A quality life is not our goal, it is our foundation. With open minds, fluid expectations, and grateful hearts, we can learn day by day to manifest grace and light despite the darkest shadows.

Peace and love to you and yours…

Honor the Space Between

Wanting and working and waiting builds character. Our family’s patience (both collectively and individually) has expanded during Abraham’s 30-month battle against brain cancer. I don’t claim that as a special feat; there really is little choice during intense times of medical necessity.

As 2017 began, Abraham had his three-month MRI. The results documented a stable scan of his brain and spine, and under direction of our skillful oncology team, the surgeon removed the port in Babe’s chest. He and his brother Tom have been fighting a persistent fever and cough, but it seems they are both slowly, steadily on the mend.

Removing the port moved us all one step away from Abraham’s cancer treatment. It doesn’t signal the all clear, but it does change our space into a milder yet untold truth that lies somewhere between no longer – and not yet.

Our son may no longer be in active treatment, but the view for a cure that holds much certainty remains hidden.  We continue to grow our hope despite the unknowns because our perspective is fed from gratitude and grounded in faith.

Like everyone, we cannot see beyond our present reality. Setbacks such as fevers that linger and falls on the ice make it even harder.

So for now, the transitional stretch ahead offers our family an open climb. Fortunately, this new, formidable terrain welcomes us all with majestic, humbling views along the way.


Peace, love, and strength…

Gifts Before Christmas 

Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

-Melody Beattie

It’s almost Christmas, and our driveway is now properly trimmed with my new Crafting for a Cure Peace Sign.

And with only four days to go, of course there are cookies:

A year ago, Abram was approaching nadir of his 3rd chemo cycle. He was able to leave the hospital for a couple days before the fever kicked in, and this is the moment we arrived home:He didn’t even take off his coat and hat before curling up in his recliner to sleep.

Days are still hard sometimes. Simply sending our recovering little boy to school this week after his pediatrician alerted us to active Influenza A in the area makes me want to pack my family into a sterile safety bubble. Every ache and pain -especially phone calls from school about “weird” headaches like this afternoon- sends shocks of panic back to the surface.

Despite the forever unknowns, I’m keeping busy and focusing on the positive. Tonight, in between checking his beautiful eyes, precious head and general wellbeing, I packed up some of his warm, small clothes to donate. His chubby little belly has the elastic band of his favorite Minion PJs stretched to the max. What a beautiful, happy site that is after seeing him critically underweight for so many months.

Abraham’s headache has lessened a bit and I am grateful to spend this evening with my husband, our recently-turned teenager, and a sweet little boy who has outgrown his clothes. What gifts!

Peace, love, and joy…

Shifting the Burden

Do not free a camel of the burden of his hump; you may be freeing him from being a camel. -Gilbert K. Chesterton

Freeing ourselves from our burdens is not always possible. That does not mean we are doomed to break under the pressures of family, occupation, or self.

Today, my sister and I brought Abraham to the hospital to flush the port in his chest, to be examined by the radiation oncologist for side effects or signs of regression, and to confirm the route we will take to amplify his decreased hearing due to the ototoxicity of chemotherapy.

All of those things are difficult.

Yet, all of those things are who we are.

Here is Abraham in the Chicago Sports Room waiting for the nurse to come with her tray full of needles and syringes. With all the pains and discomforts and inconveniences and exclusions that cancer has thrown at my little boy, needle pokes are the toughest part for him.

Yet, there he stands proud of his hat, and although he was definitely afraid, when the time came, he took his seat and allowed Nurse Jessica to do what she needed to do – because that’s just who he is.


Sometimes, recognizing our responsibilities as part of what makes us whole and unique shifts the weight of what we must carry to what we are made of; thereby adding substance to our sense of self and reducing the pressure from our sense of duty.

Peace, love, and shifting perspectives

Snoopy Time

It doesn’t matter what you believe just so long as you’re sincere. -Charles M. Schulz

Not everyone celebrates Halloween.

Not everyone eats candy.

And that’s ok.

Us? We have two young sons who enjoyed both yesterday.

In the last two years, Abraham’s health has made conventional Halloween fun a challenge. In 2014, he was recovering on October 31st from brain surgery the day before at the age of six.

He, Tommy, and their cousins celebrated early that year at a trunk-or-treat. Our little Minion didn’t feel well, but he made it through.

Two years ago today, I updated friends and family post-craniotomy:

‘Intense day yesterday, but turned a little corner last night. Ate a tiny bit; talking more. Doctor very pleased with the surgery results.

Line of the day:

Nurse: That was a good idea, Abraham!

Abe: You can call me smarty pants if you want to, even though I got no pants on!’

Always a jokester, even when he is recovering from brain surgery and hooked up to monitors galore.

In 2015, Abram was seven and battling infection and the effects of chemotherapy. He and I celebrated together quietly in the hospital.


This year, we are eating up every aspect of the season together as a family.


Abraham has to be one of the biggest eight-year-old Charles M. Schulz fans around. He has vintage Peanuts books, memorabilia, encyclopedias; you name it.   It is also his dream to be a comedian or cartoonist one day.

It’s the Great Pumpkin Charlie Brown started our family weekend rolling. Like the Peanuts gang, his old soul is straight out of the past where kids were kids and the world was a welcome playground. To be hospitalized on a sweet, spooky and silly holiday two-years in-a-row was unfortunate. So this year on Halloween, Abraham and his brother Tom were able to just be together and have some fun.

Times have changed and so has trick-or-treating. We only went to houses we knew, but we made the rounds, because this pup needed to ring some doorbells!

With each achievement, we celebrate. We celebrate childhood. We celebrate mobility and stamina. We celebrate family and friends. We celebrate happiness.

We celebrate life.


Peace.

Willing Dreams

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. -Christopher Reeve

Today is Sports Day at Taft Shool. Abraham decided he would represent his t-ball team “from when he was young,” and Anthony Rizzo’s team, the 2016 history-making, pennant-clinching Chicago Cubs.


Some people dream of winning it all. Others seek international fame or great wealth. I envision a kinder, healthier world for our children and grandchildren. If you ask eight-year-old Abraham Daily about his dreams, he will tell you, “I just want to be able to grow up, and I want to have a job where I can make other people smile-like a writer or a comedian.”

So let it be.

The realization of any dream originates somewhere in the mix of intention, determination and application. Oftentimes, the pursuit of that dream may seem unreal. We may feel the world or the odds are against us. Plus, we cannot simply will our dreams into place.

But dreams can come true.

To get past our doubt and to embrace our vision, we must believe; we must work; and, we must persist. Though first and foremost, we must be willing to dream.

Why bother when so many dreams cannot come true?

When we work towards the possibility of fulfillment despite the scarcity of chance, a single dream actualized could result in an extraordinary life.