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Smile Searching

Always in search of a positive path while still living a life in the now.

Smile: it’s Monday!

-Jac

Positive Attitude In Negative Situations (P.A.I.N.S.)

You know Abe’s had more than a couple surgeries when the anesthesiologist asks, “Which flavor mask would you like?” And he looks her pointedly in the eye like DeNiro ordering a cocktail,

“Mixed. One tiny drop strawberry first. THEN, the rest bubblegum.”

Also, Abram said to Dr. Chin as the team wheeled him in to Surgery yesterday, “Doctor, I’m so tired after last night, you’re not even going to NEED those anesthetics.”

Ever the definitive comedian:)

(Chemo Groucho. Chicago, 2015)

Peace, love, and happiness…

Protection Forever

“It is the nature of grace always to fill spaces that have been empty.”

-Johann Wolfgang von Goethe

I miss my mother every single day. At scary times when I try to conjure a sense of security around me as “Brave Mom,” I miss my mother extra.

Those who follow our story know how Abraham can sometimes make tough days seem like holidays. Today was one of those days.

Surgery was scheduled for 8:00 a.m., and we’d come up to Chicago a day early to enjoy the city.

Although the hotel was a comforting luxury, we both had a rough night sleeping so near Navy Pier. Fireworks were a thrilling bedtime story, but the continued pulse of hot rods, motorcycles, and 3:00 a.m. rogue fireworks (with a quick follow up of sirens that chased away said rogues) made our 6:15 hospital arrival a bit robotic. Luckily, Aunt Marg is a great driver and RoboMom is incredibly efficient; consequently, we arrived early.

We definitely weren’t robots for long. Every single worker we met from the minute we arrived at Lurie Children’s Hospital lifted us up today: smiling receptionists at the ready; security guards comfortingly on duty; an anesthesiologist who kinda looked like me and definitely shared my sense of humor; a successful on-time surgery; and a smooth recovery without complication.

I snapped a quick pre-surgery shot just as he was ready to roll…

I also shared the following update on Facebook as we waited for the anesthesia to wear off:

“Got it done! Apparently, Abraham was cracking jokes with the surgeon on the way in, and although he’s still a bit anesthesia-loopy, he has the sweet nurse smiling and feeding him a red popsicle. Plus, the hospital has new, improved, Looney Toons band-aids:)… Love and big gratitude, all 💛✨”

As soon as we were ready to leave, two candy-striper-age volunteers found a wheelchair quickly (no small feat) and easily escorted us downstairs -engaging Abraham with a true, sweet tale of his beloved neurosurgeon, Dr. DiPatri having been on “Cake Boss”. We can totally picture it!

Add in our 70-mile transit time plus a huge Rosatti’s carry-out order, and we were still safely home by noon!

So, everyone who sent us the happy feels today, we got them. Your energy wrapped us in a protective, loving grace and carried us through our day.

“Love as powerful as your mother’s for you leaves it’s own mark. To have been loved so deeply, even though the person who loved us is gone, will give us some protection forever.”

J.K. Rowling

I am forever grateful.

Peace and love…

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…

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…

Speaking to Santa

Christmas is the spirit of giving without a thought of getting. It is happiness because we see joy in people. It is forgetting self and finding time for others. It is discarding the meaningless and stressing the true values. 

-Thomas S. Monson

Abraham has never been at a loss for words, yet when it comes to Santa, crickets. Not a single word spoken until prodded by Dad, he finally asked Santa for Granny to have flowers for Christmas.
Peace, love, and joy…

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