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…
4 thoughts on “A Quality Life”
Written wonderfully! I feel your pain, frustrations, hope and love. Please, no second guesses, you’re doing what you hope and pray is best. One thing I’ve learned is the same thing happens when you worry as when you don’t. Enjoy every day without wasting time of worrying. Very much is out of your hands and in Gods. By enjoying quality and happiness, you can’t go wrong. One day at a time…sometimes one minute at a time…grab your happiness and enjoy.
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Thank you, Joy. I so appreciate your kind words. Plus, “Grab your happiness and enjoy” sounds like a very, very good plan:)
Thank you for sharing this. From my 34 year career as a health professional and personal experience with loved ones you are so right in knowing that all of life is a balance and all that really matters is the love and joy. I am so sorry that the side effects are present. From when I have been the one having to make the decisions, I think it is a blessing we often do not know what will happen in the future because I would not be able to predict if the suffering would out weigh the benefits and I might have missed many of the joys. And I have often witnessed that the siblings who grow up with a sibling fighting major health issues become extraordinary people. They “get it” far earlier than their peers, that there things a lot more important than what to wear or who goes out with who, etc. Blessings on all of you as you continue the journey.
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I am very grateful for your kind and insightful words. I agree, I think it’s best to choose with a very present mind and not look too far ahead. It’s difficult to do most times, and it means a lot to me to hear of your experiences. A dear friend gave me a strong warning from her own sibling experience, and I have tried to be very conscious of my older son’s experience as he sees his brother and parents deal with the complex and unbalanced state of this ride. He hasn’t had it easy and many of the unfair moments have fallen on him. So again, thank you for the reminder that the ultimate value of our “expensive” trials are shaping us all in unique and positive ways.