Thirty Years Since the Day Everything Changed!

October 17, 1996 - October 17, 2026 - Crofton, Maryland - Today marks the 30 Year Milestone of Ryan’s Original Diagnosis of Acute Lymphoblastic Leukemia!

Our entire world changed on this day thirty years ago, different, really, than getting married or losing a family member. It began so ordinarily. Ryan, age two, woke up with another fever. He was supposedly battling an ear infection, so we, his fraught parents, decided another visit to our pediatrician’s Annapolis office was in order.

But before I share the excerpt of that horrible day, I think about the young mother I was then.

I was 30 years younger and knew absolutely nothing about childhood cancer.

I didn’t know the language, the protocols, the medications, the blood counts, or what our family would be asked to endure. We entered a wild ride without our seatbelts buckled properly yet.

The only thing I knew was that my little boy was very sick and I needed to help him. At the same time, I was still Olivia’s mom, too. She was only four years old, and I probably worked just as hard to keep her world safe, happy, and moving forward while so much of ours was falling apart.

I did the best I could with what I knew then. We all did.

Thirty years later, I’ve changed. Bill has changed. Olivia has changed. And certainly, Ryan has changed. That’s what thirty years does to all of us, not just our family. But there is something about a date like October 17 that collapses those thirty years in an instant. I can still see that young family, just arrived, standing in the hallway at Georgetown University Hospital at the very beginning of something none of us could possibly comprehend.

We didn’t know what was coming. Maybe that’s a blessing.

So today, I’m going back to October 17, 1996—to the day before we knew words like ALL, chemotherapy, blood counts, radiation, neutropenia, and that the entire entity of childhood cancer would become part of our family’s everyday vocabulary.

Here is how I remembered that day in The Focused Fight: Chapter 2 Excerpt

The Day Our Worlds Changed Forever

Franklin D. Roosevelt called December 7, 1941, “A date which will live in infamy” just before Congress declared war on Japan after the attack on Pearl Harbor.

For my family, our “date which will live in infamy” was October 17, 1996, when Ryan, at age 2, was diagnosed with Acute Lymphoblastic Leukemia (ALL-Pre-B cell) with Central Nervous System (CNS) Involvement. That means the leukemia had burst through the blood-brain barrier. That day—with an army of physicians, nurses, and a wall of hospital personnel at Georgetown University Hospital in Washington, D.C.—for them, a declaration of war was issued for another case of childhood cancer, this time aimed at the Tomoff family.

The Timeline — Thursday, October 17, 1996

8:00 a.m. —Kids wake up in happy moods.

8:30 a.m. — Ryan feels warm to touch—temperature 100.3F.

8:30 a.m. — 9:00 a.m. - Breakfast.

9:30 a.m. — Telephone call to Bill to report on Ryan’s slight temperature. We confer and Bill suggests to call the pediatrician office visit for another ear infection evaluation. Bill also mentions that he has a luncheon meeting and would not be available to discuss Ryan’s appointment until after 2:00 p.m. (But it’s just another ear infection, right?)

9:35 a.m. — Appointment made in the Annapolis office with Dr. Susan Klugewicz.

11:00 a.m. — Left Crofton for Annapolis for Ryan’s 11:30 a.m. appointment time. (Swim lesson for Olivia was scheduled for 1:00 p.m. at the Annapolis Swim Center).

11:30 a.m. — Arrived for an appointment and ushered into an exam room. Vitals taken by the nurse.

11:45 a.m.–1:00 p.m. — Dr. Klugewicz entered the small exam room. I began details of Ryan’s ear infections, bouts of diarrhea, and at this point, more unexplained bruising on his back, plus noticeable red dots (petechiae) on his legs that just appeared that morning (meaning his platelets were dropping considerably/internal bleeding “At this point, I still knew “nothing.” However, that “nothing” turned into “something” very quickly as Dr. Klugewicz put her head down, would not look up to me as she spoke, continued to examine Ryan, and said most casually that she would like to poke Ryan’s pinky finger for a blood sample! I was still clueless as to what she was getting at.

After pricking Ryan’s finger to get a sample on the slide, she quickly left the exam room without saying a word. Hmmm, I thought. The three of us tried to make the best of the hour or so of “wait” time in that little exam room, but I have to admit that Olivia and I were getting antsy to leave and get to the swimming pool for her lesson. When I opened our exam room door, no one was in the hall or in the large waiting room with a TV blaring out a Disney movie. I sent Olivia, then 4, out on a reconnaissance mission to double-check the lobby waiting room, and report back on whether or not she saw anyone, most notably Dr. Klugewicz. Nothing. No one anywhere. Now this seemed very strange to me. I realized it was lunch hour, but gosh, how rude was it to take lunch and not finish with your patient appointment first? It then got eerily quiet around the entire office. It was like a ghost town and I became angry.

1:00 p.m.–1:30 p.m. — Dr. Klugewicz entered our exam room and asked to meet with me privately. A staff nurse took Olivia and Ryan to the lobby to watch something on the Disney Channel (or the repeat of the movie already going), and I was escorted to an office down the hallway. At this point, I could not imagine what she was going to tell me, but for some unfathomable reason I “braced” myself for the proverbial “sledgehammer across my head!”

Looking back, she was preparing to make a life-changing diagnosis on this little boy and his family. She already knew what the “problem” was before the results came back from the blood test.

Dr. Klugewicz did not pull any punches in the office with a large, imposing cherry desk and many medical books on the bookshelves directly behind her, nor did she sugarcoat anything, but she was loving and kind and very sympathetic as she ushered these words: “Ryan has leukemia. You need to get to Georgetown University Hospital as soon as possible; the staff there are already expecting you!” At that very moment, I dug deep into my soul, not knowing the huge road we were about to walk down, and promised myself that I would do everything and anything humanly possible to save this boy from any harm, including the cancer that was ravaging his tiny body.

After she let me process this devastating news for a few minutes, she offered to call Bill. I simply could not tell him what she just said to me, and told her so. We called his office knowing that he was in an important meeting but hoped he would be able to take the call. Dr. Klugewicz upped the ante and stated this was a medical emergency and would life flight us down there now, but she thought a grace period of an hour or two to get home, make arrangements for Olivia, and pack for a hospital stay was more beneficial for everyone involved.

Interestingly, when Bill was called out of the meeting, he had a gut feeling something was amiss. He knew Ryan had what he thought was an ear infection, or double ear infection, but of course, never thought his son was riddled with a massive 58,000 white blood cell counts and dropping platelets that day. I guess he was thinking maybe Ryan would need tubes in his ears to clear out the fluids, not cancer. Dr. Klugewicz did her best to retell what she had already told me, and we hung up after agreeing to meet up at home to pack and make arrangements for Olivia.

2:00 p.m. — The three of us arrived home and began packing a bag for at least a 30-day stay at Georgetown. I also made two phone calls. The first was to my parents, Sophie and John Nolan, to tell them about Ryan’s diagnosis (and medical emergency) and that I needed them to drop everything and get on the next flight from Cleveland to Baltimore/Washington International Airport (BWI). The second call was to my sister, Kimberly, so she could help explain the diagnosis to my parents and so she could call my other sister, Annette. I was panicked and needed my parents to come East and take care of Olivia and Wally. A frazzled and frightened Bill arrived shortly after I got home and quickly packed his bag. Luckily, our next-door neighbors, who coincidentally had moved into their home the same week we did, agreed to care of Olivia and Wally until my parents arrived later that evening. That was a huge relief in a day that was gaining acute intensity every minute.”

3:00 p.m.–4:00 p.m. — With a handy D.C. Metropolitan road map, bags packed for a month for three people, Bill at the wheel, and Ryan strapped into his car seat, we headed out into D.C. traffic and found our way to the stately 227-year-old Georgetown University Hospital. As I glanced at Ryan in the back seat, he seemed happy and “not sick,” as least to me. But we knew better, and took deep breaths as we weaved our way through the brightly colored leafy city, into the tight spaced parking garage and finally through the staid corridors of the hospital. We had no idea what to expect, or really where to go, because neither of us had experience in being in hospitals, let alone a pediatric ward with other “sick children.” It was very surreal and we were petrified. My hands, usually sweaty and dripping, were ice cold.

4:00 p.m.–6:00 p.m. — Once we found our way to the 5th floor of the Concentrated Care Center (CCC) building, the three of us were met by Dr. Joseph Gootenberg, Head of the Department of Pediatric Hematology and Oncology, several interns and residents in their obligatory white coats in varying lengths, a social worker, a couple of nurses and Tim Mooney, an evening admission counselor. It was literally an army of medical personnel ready to fight the battle of childhood cancer, this time with Ryan, who was quickly escorted to a room on C5-3. His vitals were taken once again, labs were drawn by holding him down as he screamed and kicked in a way that was painful to watch. And the dire circumstances of Ryan’s leukemia were mounting rapidly. I fainted to the floor…out cold for a few minutes. ,Once I came to with smelling salts and some orange juice, I felt like I was in a fog. I simply could not wrap my head around what was happening to my little boy. I wanted to scream, too! I wanted all this talk of cancer, chemotherapy, Broviac surgery, and a whole host of other topics I don’t even remember, to STOP! Unfortunately, it didn’t, and at that point I had to valiantly hold back the tears and “buck up” to deal with this crazy disease called leukemia. We simply had no choice.

6:00 p.m.–9:00 p.m. — The intensity at this point was gaining momentum, worse than the previous few hours. Ryan’s lab results “were back. His white blood count (WBC) was high at 58,000 and his platelets were crashing and under 9,000 (he was, for a lack of better terms, bleeding to death on the inside). In moments, a nurse had inserted an IV in his left arm (complete with a board so his arm would not bend) and the precious platelet transfusion began. Another IV was started in his right arm for red blood cells (RBCs) because he was also losing blood at an alarming rate (meaning: immature white blood cells (WBC) were overwhelming the bloodstream and quality red blood cells (RBC) and platelets were not proliferating. A third IV was started in his left leg for supportive antibiotics because he still had a fever. And finally, his fourth and final IV that day was placed in his right leg for something I don’t even remember, but most likely fluids, as he was dehydrated from the fever. Ryan looked like a zombie, albeit a small one, with four boards holding all IV’s in place to protect his veins with no bending or movement in any of the four limbs. I do remember that he screamed and cried quite a bit because this little boy had gone from walking and playing in the morning to a dying little boy “only” 12 hours later. He was in a world of hurt, and so were his parents. And through all of the alarming scenarios above, it was “imperative” to get down to admissions and register Ryan as a patient, obtain parking instructions, and authorize our insurance information and identity that we were indeed Ryan’s parents. There was no getting around that.

We could barely breathe…

9:00 p.m.–12:00 midnight — This is as difficult for me to write as it is for you to read, but Ryan’s situation only got worse over the next three hours. While attempting to console this poor child, and “holding him in my arms, I noticed his eyes were rolling back into his head. He became listless. Alarmed at this new development that came on very quickly, we alerted the nurse and interns and yelled for them to take a look.

In a flash, a nurse took Ryan out of my arms and practically ran with him down to the Pediatric Intensive Care Unit (PICU), as Ryan began to code blue. In a blink of an eye, hospital personnel quickly responded and immediately implemented resuscitative efforts. We were jumping out of our skin with worry, and the dread of possibly losing this boy was truly unbearable. In stunned silence, we were somehow escorted to “wait” at a large set of windows, complete with a very long and colorful wooden bench that straddled the two floor units while overlooking the Georgetown football stadium.

We didn’t know where to look, because if we looked through those big windows to the life that was going on below us, we knew that wasn’t in the cards for us, certainly not that night which was difficult to fathom; Then thought, how the heck are we going to get through all this mayhem?

I believe it took a few hours for the PICU doctors to stabilize Ryan, and then a couple of more hours before we could see him. The wait to see Ryan was excruciatingly slow. Nothing could console us at that pinnacle of time, but somehow, someway, he survived this whole ordeal.

And so did we.

I call that a miracle and near-death experience #1.

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Thirty years. Three decades! Can YOU believe it?

It’s almost impossible for me to comprehend that much time has passed since that day. We were simply two worried parents taking our two-year-old son back to the pediatrician because his fever wouldn’t go away. We had no idea that before the day was over, our family’s life would have a very distinct before and after.

I am so glad I eventually got to release all those details—not just from that day, but from so many stories I had carried deep in my soul for years. Writing The Focused Fight became a release I didn’t fully understand until I was doing it. Putting those memories on paper didn’t change what happened, but it gave some of the angst, fear, heartache, and many tears somewhere else to live besides inside me.

You know what, though? I still carry the story. It just doesn’t feel quite as heavy (most of the time).

And today, more than anything, I look across those thirty years and see Ryan, Olivia, and Bill!

Yes, Ryan is here!

Those may be the most important words I can write today.

There have been far too many treatments, relapses, scares, late effects, and battles along the way. Childhood cancer certainly didn’t leave our family untouched when treatment ended. But there have also been birthdays, graduations, family celebrations, a grandson, Quilting, pickleball, soccer games to referee, ordinary Tuesdays, laughter, travel, and a whole lot of living that the terrified mother sitting in that pediatrician’s office thirty years ago couldn’t possibly have imagined.

If I could reach back through those thirty years and put my arm around her, I’m not sure I would tell her everything that was coming. That would be far too much.

I think I’d simply whisper:

Keep going.

And so we did.

Thirty years later, we’re still here.

And today, that is enough. 🎗🌟 💛

bSoleille! And thanks for reading...especially if you got down to the photos

Terri

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