One-Year Anniversary of Diagnosis Day

Today is the one-year anniversary of our son Thomas’s diagnosis of cancer. At Rosary tonight, our eight-year-old aptly asked, "So, is this a sad day or . . . ?" This day brings a maelstrom of emotions!

Many cancer families mark Diagnosis Day and develop traditions for the day. I don't know what our future holds in that regard, but we donated the altar flowers at our church this weekend "in thanksgiving for God's providence on the one year anniversary of our son Thomas's diagnosis of cancer." We also sent breakfast to the family practice staff along with a sincere thank you note to Thomas's then-primary care Physician's Assistant who diagnosed Thomas.

Neuroblastoma is notorious for being misdiagnosed by numerous medical professionals for weeks and months--all the while it is very rapidly spreading--but Thomas's was diagnosed in one day. It is one thing to know that about the nature of neuroblastoma, but I've spent a year on a Facebook group for neuroblastoma parents reading their agonizing stories about how long it took to get a diagnosis--ever strengthening my gratitude for our Physician's Assistant.

One year ago, we were in the midst of COVID restrictions when I told our care provider about a lump I had felt in our four-year-old Thomas’s belly. The practice wasn’t seeing most patients in person—doing everything virtually instead—and I said, “What should I do? You can’t diagnose a lump over the computer.” He told me to bring in Thomas the very next morning at 9:00 a.m.

Never had I watched a medical professional palpate one of my six children’s bellies so thoroughly or for so long. He did a masterful job of being honest without scaring me to death. He quietly slipped in the word “cancer” amidst a list of possible causes of this lump . . . but I think he and I both knew that cancer was what he was honing in on. He ordered blood labs and the nurses couldn’t believe a four-year-old was so incredibly calm about his first blood draw, which was only the first of hundreds and hundreds of blood draws. The PA scheduled an end-of-day abdominal ultrasound for Thomas so that he would have hours enough to fast to get a clear picture. My biggest worry and fret was how on earth I would get a four-year-old to fast all day long, but Thomas received many graces and did not complain at all: we didn’t know it was the first of so many days, stretches of days, and stretches of weeks when he had to be NPO and my experiencing much greater worries than a preschooler being left hungry. 

That Thursday, we scrapped all our plans and routines. Thomas’s siblings did activities with him all day long to distract him and keep his mind off being hungry . . . and nobody ate a single bite of food in front of him. (This became our new family practice over many months: every time Thomas had to fast, the family found ways not to eat in front of him.) The siblings took him for a nature walk in the woods, I walked him through the neighborhood, they played baseball with him . . . and he even slept for several hours when he hadn’t napped in about two years, which was a little gift from God.

I walk past this little library in our neighborhood very often and I always, always, and always remember Thomas sitting there on our walk during the Day of Distractions that ended in his diagnosis.

Having a child diagnosed with cancer is like having the curtain pulled back and realizing that what you thought was reality (I have a beautiful, healthy child! Look at him sitting on a log reading a book!) is a mirage, and now true reality is revealed, the truth God knew all the time and is now allowing you to glimpse. And then one realizes that we see through a glass terribly darkly and don't know much of reality about anything going on. Our perceptions are so superficial.

At the ultrasound one year ago, I sat quietly while counting the photo snapshots. Ten . . . twenty-five . . . fifty . . . I lost count but estimated maybe something like 100 images, all while Thomas lay still like a lamb. The technician was quiet, and at the end I very ignorantly thought maybe she took all those photos because she couldn’t see what turned out to be the one-pound, 13-centimeter tumor. I asked, “Were you able to find the lump?” She replied, “Oh, honey, I found it right away. Now, will someone be able to reach you tonight? Normally the doctor wouldn’t call you until tomorrow . . . but someone will be calling you tonight.”

I took my very hungry Thomas to a mommy-son dinner date, just the two of us. In fact, as the fifth child in a family of six, it was his very first mommy-son dinner date, which I realized with bitterly stinging tears as we sat at the table. I took a photo of him with his juice box, saying to myself, ‘This is the last time I get to live in ignorant bliss. They are going to call me with some very bad news.’

Indeed, the PA called within two hours of the start of the abdominal ultrasound appointment, almost as soon as I walked in the door at home. With compassion and genuine emotion in his voice, he told us that they had found a cancerous tumor, that Levine’s Children’s Hospital would be calling us as soon as their doors opened the following day, and that we needed to be ready to go in for a day of testing.

 After the initial phone call, we called him back on the personal cell phone number he had kindly given us. We were so confused at the time by the estimated size: surely he said 11 millimeters in diameter, not 11 centimeters? That’s bigger than a softball! 

“Correct, I said centimeters.”

 The next morning, I called our friends for emergency babysitting

. . . and by “call,” I mean screamed in primal agony into the phone in such a way that I’m surprised my friend could understand my words about “cancer” and “testing” and “please come babysit my other kids.”

 

Thomas was in cheerful innocence and thought it was really special to get to pack his backpack, snacks, and go somewhere with both his Mama and his Daddy! In the picture, one can see his sweaty hair; in retrospect, many of his photos from those weeks showed sweaty hair, which is a classic sign of neuroblastoma because of the hormone catecholamines that are released abundantly by the tumor.

So many family, friends, and kind strangers know the rest of Thomas’s story.

Open biopsy. Neuroblastoma diagnosis and staging.

 Six rounds of chemotherapy.

 

Tumor did not respond.

November 18: Tumor resection surgery lasting 12 hours.

 

Complications. SIRS response starting the next day. 

Major organ failures of kidney, pancreas, liver, and endocrine system.

Complete necrosis of organs. Nearly bleeding to death. So, so much blood everywhere.

December 4: Emergency surgery. Complete gastrectomy. Ultimately removing spleen, gallbladder, as well as pancreatic and hepatic ducts.

 

Eleven more surgeries, most of them within one month.

Intubated and sedated for weeks and weeks. Two months in PICU.

Ninety-three units of blood products transfused.

Extended pleural effusion of both lungs. Extravasation of the arm requiring plastic surgery.

Opening one eye to look at Daddy after one of his surgeries

Due to COVID restrictions, the siblings were not allowed into the hospital, and had to go without seeing their brother. Thomas became so withdrawn and depressed as four and a half months passed by to the point that he would rarely smile and, for the most part, would not speak or look at any hospital staff. This degree of isolation increased the suffering tremendously.

After 132 days in the hospital, Thomas came home on March 29, 2021!

 

Thomas has been home just more than two months as of this one-year Diagnosis Day. He has learned how to walk and we can anticipate that he will become better and better at that over the coming year. He will be getting custom-made articulated ankle braces soon. Thomas slowly came out of his shell over the first few weeks, found his voice again, and now chitter-chatters all day long, tells many jokes, and sings his favorite songs loudly for the world to hear. Our boy is learning how to eat post-gastrectomy and currently eats an average of 700-1,000 calories by mouth per day; he is off TPN now and gets additional calories via his J tube. He still vomits 15 to 20 times weekly and has urgent bathroom needs that limit what venues we can visit or patronize or what social situations work for him.

The siblings are doing well and many of the very challenging emotional problems that manifested during those long months seem to be healing and fading away completely. Thomas's brothers and sisters love him tenderly, take care of him, and now have to be reminded by me not to do everything for him or he won't gain age-appropriate independence!

Mama and Daddy? I often wonder how we are doing. I held it together during those four and a half months standing guard and vigil at the hospital, so when Thomas finally came home, apparently it was psychologically safe for me to start to fall apart. I'm not shedding so many tears now as in the early weeks, but I notice I burst into tears at various doctor's appointments or certain conversations. PTSD is very real! I still sleep clutching a wooden cross, a comfort habit I picked up in the first month of Thomas's diagnosis.

I've learned so much about the pragmatics of nursing care, and the time it takes me to draw up multiple-times daily meds is less now. I'm currently spending an estimated 10 hours per week just taking notes on Thomas's daily nutrition and everything his body does, two to four hours weekly in emailing back and forth with Thomas's doctors plus making phone calls to the pharmacies, two hours weekly in Physical Therapy, and variable amounts of time taking Thomas to doctors' appointments, which have slowly reduced from two to three weekly to an average of one weekly. I'm also researching through medical journals to learn more about complete gastrectomies of early childhood, which we have now learned are incredibly rare, only in the hundreds of patients worldwide.

I often ask myself how I am changed, how Chris is changed, after this momentous year. The truth is, it remains hard to see the forest for the trees and I think we will know more about how our characters and virtues have changed at Thomas's second anniversary Diagnosis Day.

What will our family traditions be going forward? We don't know. Today we were just too busy living life to the fullest while we still have life because, guess what? When you have children, you are not just being "open to life," open to crying babies and diapers for years. Having children means being open to all of life, all the uncertainties, to tragedy, and to becoming a Special Needs Parent when one never expected that and "didn't sign up for it."

We spent today touring the Hiddenite Emerald Mine with a bunch of pals! We went to dinner at a restaurant, where Thomas ate a few bites (all he can manage at one time) and declared himself "stuffed as a puff" (his cute little phrase) and then rosary and a family movie followed.

Thank you for all of your prayers, meals, gifts, donations of money, and love over the last 365 days.