Always in search of a positive path while still living a life in the now.
Smile: it’s Monday!
Always in search of a positive path while still living a life in the now.
Smile: it’s Monday!
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…
“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.”
I am forever grateful.
Peace and love…
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…
No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.
Discovery lights children with vitality. As we age, it seems we find fewer moments that fill us with awe. Is it that we become jaded to joy? Or, do we become so resigned to our circumstance and routine that we decide there isn’t anything worthwhile left to find?
When Chris, Abraham and I stayed at the Ronald McDonald House near Loyola, the director informed us that the home was built with a secret. We were free to walk the floors and look for a hidden room. Despite the looming task of cancer treatment, the mystery fueled our sense of wonder. Knowing there was something to find kept us searching. We searched for hours and were delighted to discover a brightly painted secret passage with a spiral staircase hidden behind a bookshelf. One by one we wound our way up the tiny stairs to an enormous attic. The entire floor was sparsely furnished and minimally decorated, but its expanse was thoughtfully accented with quiet cubbies, game tables, and children’s art.
In the secret attic, we met a red-haired boy named Andrew expertly sinking billiard balls (despite his heavy reliance on a walker) who became a dear friend to Abraham. A small window seat overlooking the flower garden became my favorite hideaway. After our discovery, years fell from Chris’ eyes while his movements and posture revealed a lightening of his spirit. He often recalls our time at RMH Loyola as “our magical stay at the castle.”
We had arrived at “the castle” physically, emotionally, and spirituality exhausted just days after Abraham had received his central line, and we remained there as the dreaded combination chemo-radiation treatments began. The rooms were small, and the area was sketchy, but the atmosphere of possibilities at our home away from home was different-otherworldly. As a result and despite our pain and apprehension, we had great fun.
I mention this today because it reminded me of how different life becomes when we actively seek hidden joys instead of expecting them to materialize without direction or effort.
My recent lack of posts belies my standard routine. I write every day to let go and work through the pieces of life that strike me -good or bad. Currently, my family is steadily progressing down the twisted, singular road of pediatric cancer survivorhood. Though I sometimes share the teachable moments we uncover, lately I’ve become cautious.
With each paragraph I write, I feel more and more protective of my thoughts. Why should I add our personal joys or struggles into a social mix where blanket hatred abounds and keyboard critics reign? Scrolling through the social muck and placing a photo of my children or myself in the mix feels like trickling glitter down a drain.
Then I remembered searching for The Secret Garden at Ronald McDonald House and the lasting effect that day of discovery had on all of us. I want readers to feel my faith in the unseen possibilities that can come despite trials and loss. It’s easy to choose joy when days go well, but it’s vital to choose light when life goes dark.
Maybe if I cast out flashes of decency and hope, some of its glitter will stick to the edges of our plunging, murky standards. It’s a small drop in a large bucket, I know. Yet, I am compelled to remind others that amid the endless trauma and pains of life there remains abundant happiness to seek.
I see myself as a hopeful realist. I know that there is a shortage of love and an abundance of evil in the world. I know it is always a close race between what should be, what can be, and what will be. I also know that life isn’t always fair.
But I choose to focus on what I can bring to the human race so that I can best lead my family through its tricky paces. I find it fruitless and ridiculous to spend precious time fixated on the transgressions of others running in their own lane.
So, despite the social spectacle dousing reality with real (and imagined) fears, I will face forward and move along in positive measures.
While doing so, I hope no matter the climate, I can continue to chronicle our shared, imperfect, spectacular landscape where limited days draw purpose and unlimited hope fosters love.
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.
Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.
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…