A Preamble - Cancer affects nearly every family worldwide in some capacity or another. The following essay is a bit about my experience being the father of a wonderful young boy who has been battling cancer for more than a year. My opinions are my own, and some of you may (or may not) find offense, sadness, or even inspiration in my perspectives, thoughts, and beliefs. I will not apologize for your reaction to my experiences, and I certainly will not apologize for the circumstances that were brought upon my youngest patient, my oldest son, my wife, or myself. If you got a problem with what you read, well... get over it.

AUGUST THE 25TH, 2023

The Not-Long-Forgotten Beginning

When my youngest son, Sal, was diagnosed with Leukemia my wife and I were obviously rife with every damn emotion you can think of. There was though, an extremely small part of me that wasn’t upset, a part of me that already knew something was seriously physically wrong with Sal after the past 6 weeks of odd, unexpected, and random illnesses.

During that time, Sal had two ear infections, strep throat (which you just don’t get as a 2-year-old toddler), general malaise, along with a lack-of-appetite (which is odd for a Cassata) along with a swollen stomach and a pale, almost grey-like appearance. (Similar to the color of those flat front, cheap, “stone-color” khakis that the “IT guy” always wore in the early days of web design firms, which were always on the receiving end of a spilled cup of coffee by the time lunch rolled around.)

The fact that made me “know” something was wrong was due to the pediatrician who was on call in the Beaufort Memorial emergency room on August 25th, 2023 at around 2 in the afternoon. He said something that proved to be somewhat helpful to me. When he examined my son, he retorted with “well, his spleen is swollen, that’s why his stomach is so big right now” (and we just figured it was because Sal was eating his weight in pasta, pizza, and cannolis like any decent Italian little boy should before his appetite vanished).

I asked the doctor outright, “What can cause that... any viruses or parasites?” His response was rather a sterile “sometimes... but sometimes it can be other things. We will do a blood test to see.”

But his next line is what threw me for a loop…

”... but you can Google it and see what comes up if you are really interested.”

WHAT? Every doctor I have ever known or seen has always said “DON’T GOOGLE YOUR SYMPTOMS.” You will drive yourself crazy with worry and misdiagnose yourself. (Is it the plague? It’s the plague, isn’t it. No wait, it’s consumption… yes… wait, what is consumption anyway?)

But this doctor, after feeling Sal’s swollen spleen, and seeing his stone-gray skin color, and seeing the abnormal red, pinprick dotted rash on his chest and upper back, (which is called petechiae), knew something we didn’t… he knew that Sal had a major illness, and he wanted to soften the blow of us learning what it was as much as he could. The guy was playing therapist along with being the on-call pediatrician that day.

We were told to wait for a spleen ultrasound to make sure there were no tumors or blockages, but it wasn’t necessary, as within 90 minutes of the blood test, the pediatrician returned, closed the door, pulled the shade on the room door, and leaned against the counter in the room to tell us that Sal had either Leukemia or Lymphoma.

Fuck.

So, one of my first questions was… “Well, which one?” The pediatrician deferred the answer on that, stating he wasn’t a specialist (we figured that), but that the pediatric cancer team at the Medical University of South Carolina in Charleston, or MUSC, which was a 2-hour drive from where we were on vacation. (Oh… yes, I forgot to mention… we weren’t home in New York when he was diagnosed, but on vacation… can you believe that? Easily one of the most extreme buzzkills you could ever encounter...)

Elizabeth, for some reason, also had the premonition that something was wrong, and packed a bag of clothes and essentials for herself and Sal. They transported Sal with Elizabeth in tow via ambulance (which Sal was absolutely ecstatic about) to MUSC and by 9pm, he was settled in an inpatient bed in a massive room, and they immediately started running tests to confirm the type of cancer he had.

We later found out his spleen was swollen because it was full of red blood cells his body created but couldn’t push into his bloodstream because it was chock full of the immature B-Cell Lymphocytes that his body mistakenly created which to there being no room left in his circulatory system for the red blood cells to find their way in. This also provided an answer as to why his skin was stone-khaki grey, as his body didn’t have the red blood cells and therefore wasn’t getting a good amount of oxygen into it. And that weird rash… the petechiae? Well, those were the small capillaries in his skin that broke open and couldn’t heal properly and quickly because the Leukemia took up so much room in the blood that there weren’t enough platelets in the blood to help clot and heal these microscopic cuts.

It all became very clear to us, and much like the lack of space in a New York City apartment for all the taken-for-granted normalcies of a suburban house, we realized that this cancer was simply an illness of physical space… was an illness that is taking up so much room in the bloodstream of an individual, that the rest of the blood cells can’t get in and do their job, and as a result, the body doesn’t have enough healthy white blood cells to fight outside illness.

So, it didn’t take long through a flow cytometry test to figure out with 97.5% accuracy that Sal had B-Cell Acute Lymphoblastic Leukemia (B-ALL), a cancer that causes immature white blood cells to flood the blood stream, and it is not only the most common blood cancer in children, but also the most common cancer...

...And also, the most curable… which was the only real stroke of luck we had that day.

I was in between careers and wondered why nothing in the design industry hit for me in the five months I applied myself to reinvent myself creatively, but it became clear to me then, as I became Sal’s primary caregiver, and that was what my new job will be.

JANUARY THE 17TH, 2025

The Present-Day Middle

So, at the point of this writing, Sal has finished primary treatment (He finished up at the end of May, 2024) and has been in remission since Day 29. In fact, in the words of Dean Wormer from “Animal House,” Sal, much like John Blutarsky, achieved a “Zero. Point. Zero” when it came to the “minimal residual disease” he had in his bloodstream.

So yeah, that means in less than a month, he kicked cancer out of his body. Pretty Fucking badass if you ask me… but he still had to endure an additional 7 months of heavy treatment.

And here is the downside… (Yes, there is a downside that went beyond an additional 7 months of heavy chemotherapy.)

As of this writing Sal will have to undergo an additional 23 months of maintenance treatment to ensure the cancerous cells have been completely eliminated (And we already underwent 7 months of it, which had it's ups and downs, some of which I will mention in the coming parahgraphs). That encompasses daily oral chemo (Mercaptopurine) plus another once weekly chemo, either given orally or into his spinal fluid via lumbar puncture twice over a 84 days span (Methotrexate), and oral steroids (Prednisone) given twice a day the first 5 days of each month.

Much like a ginsu knife set, "But wait, there's more!"

Newly added to this is two separate months of intensive Immunotherapy which was just recently introduced via a medication called Blincyto (or Blina for short). Blina is administered via a continuous IV for 28 days straight, and as of this writing, we already lived through the hell that is one month of this (which I will recount the highlights of below), and now, we have to live through another in the starting in the middle of this coming February.

To keep this IV going for a full 28 days (or 672 hours, or 40,320 minutes, or 2,419,200 seconds), the medical team actually gives him a backpack with two battery powered pumps that he gets to keep with him for the full 28 days (but this is after a 2-day inpatient stay where he get monitored to make sure he has no aversion to the medication once it begins). As cool as this may sound, being part machine, part boy, for 4 weeks, it presented its own slew of problems (How does he bathe? How does he run around like a normal boy his age would?) The thing is though, it actually goes further, and it conjured up difficulties and annoyances that we couldn't imagine.

First, we had to take into account that the two pumps (one for the medicine itself and one for the saline that it uses as a support fluid) as well as both bags of liquid can be remarkably heavy when combined. Sal hasn't really gotten into crossfit yet, so it's going to be hard to carry a week's worth of medicine and saline in a backpack. To circumvent that, we decided to go with a two-day or three-day bag of Blina and saline, which was lighter in weight, but forced us to go in more frequently for refills and bag swaps.

Little did we know that we would have to go in many, many more times beyond that.

So, these tubes, the pumps, all of it, are a bit fragile, and can be easily marred or disconnected or simply kinked like a crappy garden hose. The good thing is that the pump will beep if there is a bubble or something blocking the flow of liquid. The bad part is, if it becomes disconnected, it doesn't beep... in fact, it doesnt do anything. It just keep pumping the liquid out of a disconnected tube.

To add, if a line becomes disconnected or if the flow of the medicine is stopped for more than 4 hours, Sal would have to stay in the hospital for 12 hours for observation to make sure he doesnt have any adverse reactions to the medicine "starting up" again.

So, to sum it up, out of the 28 days, we were in the hospital for 17 of them, which encompassed the two inpatient days, plus

1. • Short visits where he needed to simply get his bag changed,
2. • Annoying visits where his needle came out and he needed a fresh one,
3. • Obnoxious vists where the medicine in the bag "ran out" because the pharmacists didn't fill the IV bag enough (Really?),
4. • Irritating visits where his blood clotted since the flow of medicine is so slow and the blood did what it wanted to do,
5. • Stressful visits where the line broke and we had to rush him back to the outpatient unit to get a new bag,
6. and...
7. • One rather bloody visit where line ripped rather close to Sal's needle and chest port, and I didn't notice until 15 minutes later after his clothes were soaked in red. (Fun!)

Those 28 days shaved at least a year off my life, and we have to face another 28 days of it in the coming weeks. I do expect that second stint with the backpack to go better, as we now know how to counter all the issues we faced BEFORE they happen. Either way though, the beeping from the pumps are seared into my eardrums memory, and triggers an uncontrollable PTSD response whenever I hear anything similar to it (and considering Sal has close to every toy truck under the sun, and they all beep in one way or another, and add that to the fact that I live on the corner of a rather active intersection in Manhattan, the beeping and blipping and such is inevitable, and therefore, my pavolian response to the bell that is a digital beep will not go away anytime soon.)

DECEMBER THE 12TH, 2026

The Once and Future End

Every month, Sal has to get his blood count tested, and through the results of that test, they can adjust his chemo dosages if his counts go too high or too low. In the one of the more recent case swe experienced back in late July, 2024, the oral chemo completely wiped out his immune system, so he was considered compromised and we had to be somewhat hesitant in our summer plans. He later came down with a fever (again, while on one of the first vacations we had in a year), so we had to hope that he wasn’t compromised so we can get some tests and head home.

As obnoxious as these visits for fever will be (and frankly, they may be more frequent now considering Sal is going to school again), and as fearful as we may be of the risk of having Sal be admitted to MSK because he is with a fever and immunocompromised, the real stress is, what if those numbers show the reemergence of the cancer? What if his B-Lymphocyte count is off the charts, because his bone marrow in his pelvis, vertebrae, and skull started creating immature B white blood cells again and pushed them out into his blood? What if the rest of his counts are too low because of it? What then?

This is the stress that I face monthly now, and every single month I get to wonder and wait for those numbers to come back, with a level of anxiety that transcends the character of Woody Allen’s Alvy Singer in Annie Hall, or Charlie Kaufmann’s faux version of himself in Adaptation. It goes beyond a crippling anxiety, as it approaches a certain level of exhaustion, where I am so tired of being anxiety ridden, that I feel out of breath, and don’t care to move for a while. To be honest, at that point, a miniscule part of me doesn’t even care about the number outcome, I just want to find out what the numbers are, bad or good.

This is what is ahead for me for roughly the next two years until December 12, 2026. This is what I get to look forward to. This is what replaces the normal day-to-day life. This is what my family gets to live with.

I do this as I mourned the loss of over a full year of my son’s life, where he should have been playing and learning and experiencing the many different things a boy his age should witness and absorb. As for my life... well, it was a bit crazy prior to his diagnosis, and giving up a year of my life, a reset to my career, and sacrificng my own health to care for him every minute of every day is something that I am thankful I get to do. I did everything I could to ensure he will survive and grow up stronger than I ever was, and he and I developed a very unique father/son relationship that I haven’t fully realized yet. (Let’s be honest though, we are sick of each other in certain ways.)

I do mourn for the time lost to the future stress that will inevitably visit me; an anxiety that will make me wonder if I need to take Sal out of the wonderful school he just started 3K at because he needs specialized treatment for a Leukemia relapse that may not ever happen; a tension that will make me second guess my future career pathways and potential job opportunities whenever they decide to come, and the mental strain that will bring me any crushing guilt if I ever wanted to take time for myself, especially if my son’s health took a turn for the worse once again.

The only solace I have is that family caregivers all experience some of the same thoughts and feeling I have and will have endured. There is a bit of calmness that comes to me that says this is all normal for this situation and it’s ok that I feel like this.

Now mind you, it’s not like I developed Stockholm Syndrome towards my situation and my son’s current state of health, but am learning to find the joy and growth in this situation as best as I can…

… And I know that much unlike taxes, nothing lasts forever. It will pass, and one day I will recount to Sal the early battle he had to take part in to become cancer-free, and tell him that this is the reason he is the strongest member of our family who ever had existed.

SAL'S SAVIORS

Gratitude To The Helpers

A big thank you to the team at MUSC led by Dr. Michelle Hudspeth and the team at Memorial Sloan Kettering led by Dr. Maria Luisa Sulis, Dr. Lauren Herschbein, Dr. Christopher Forlenza, Dr. Kavitha Ramaswamy, and Lauren Kushner, CPNP, for treating Sal and bringing him back to the level of the energetic boy we all know and love.

A big thank you to St Baldrick’s, whose charitable funds helped fuel the research that went into the treatments that has brought Sal back from the brink. (We had a head-shaving event as well, to donate in Sal’s name, and so much was given that he will have a grant name in his honor!)

And finally, a big thank you to Laura Anderson, FNP at MUSC's Pediatrics, who was the one person who questioned all the ailments Sal had, (even after three other pediatricians didn't push for any tests when Sal was sick with symptoms that clearly showed signs of cancer) and trusted her gut to tell us to take him to the Beaufort Memorial Emergency Room for immediate testing... and for essentially being the person to save Sal’s life. She doesn't know what she did for him and us yet, but she will... one day.

That I promise.

After all this, he is still the happiest Cassata to ever exist.