Coping with Cancer As A Parent: Neal Haney's Story

Blood cancer did not enter my life all at once.

Looking back, my body had been telling me something was wrong for years before anyone had a name for it. I was young, dealing with symptoms that didn't make sense for someone my age—an enlarged spleen, profound fatigue and exercise intolerance, painful red and swollen hands, drenching sweats, relentless itching, bone pain, and eventually abnormal blood counts.

In 2021, at 31 years old, testing finally found a CALR type 1 mutation. I was diagnosed with essential thrombocythemia, a myeloproliferative neoplasm. Over the following years, repeated bone marrow biopsies and changes in my disease eventually showed increasing fibrosis and evolution into myelofibrosis.

Living with a chronic blood cancer

There is something uniquely difficult about living with a chronic blood cancer. You can look relatively normal while your body is doing anything but normal things. Numbers on a complete blood count (CBC) don't always capture the disease burden. 

Risk scores don't measure what it costs to get out of bed, parent your children, live with severe pain or itching, or spend years watching your body gradually become capable of less.

Living with uncertainty when you have blood cancer

The biggest challenge has probably been learning to live inside uncertainty. With an MPN, there isn't always a clean line between "stable" and "sick." 

My disease has changed the way it expresses itself over time. I've experienced severe systemic symptoms, chronic pain, splenomegaly, skin disease, hospitalizations, medication complications, and treatment changes. I have also experienced ruxolitinib discontinuation syndrome severe enough to require prolonged inpatient management.

Most recently, I was hospitalized with a serious infection and bacteremia. Experiences like that are reminders that cancer isn't confined to a pathology report. Treatment, immune dysfunction, infections, medications, pain, and the disease itself all become intertwined.

Coping with cancer as a parent

But perhaps the hardest part is that I am also a dad.

I have four daughters. Cancer doesn't stop being cancer because someone needs dinner, has a school event, needs reassurance, or simply wants their dad. There have been times when my body has been completely exhausted, and I have still needed to figure out how to be present for them.

That has changed what fighting cancer means to me. 

Finding hope in knowledge

Knowledge.

I became the person who reads the pathology report. I learned what CALR means. I learned how to read my CBC trends, LDH, bone marrow reports, fibrosis grading and molecular testing. I learned about JAK inhibitors, transplant, clinical trials, and the constantly evolving science surrounding MPNs.

Not because I believe patients should have to become hematologists, but because understanding my disease gave me back some control when so much felt uncontrollable.

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I've also learned the importance of having specialists who listen and of building a medical team capable of looking at the whole person rather than one laboratory value at a time.

And my family has given me a reason to keep moving forward when my body has made that incredibly difficult. 

Advice for people newly diagnosed with MPNs

You are allowed to learn everything you can about your disease.

Ask questions. Read your pathology reports. Track your labs. Learn what the words mean. Keep copies of your records. Ask why a treatment is being recommended and what the alternatives are.

And if your lived experience doesn't seem to match what a risk calculator or a single laboratory result says, keep communicating that.

Medicine needs objective data, but patients are also living data.

A CBC is a snapshot. A bone marrow biopsy is a snapshot. Your experience over months and years is a longitudinal record that matters, too.

At the same time, don't let cancer turn every abnormal number into catastrophe. One of the hardest skills I've had to learn is how to be informed without allowing uncertainty to consume every day between appointments.

Hope isn’t pretending everything is going to be okay

Hope, for me, isn't pretending everything is going to be okay. It is continuing anyway.

It is surviving the hospitalization you thought you couldn't handle. It is getting another bone marrow biopsy. It is trying another treatment after the last one failed. It is learning the science. It is asking another question. It is showing up to another appointment.

Sometimes hope is much smaller.

Sometimes it is getting out of bed.

Sometimes it is laughing with your kids when you feel terrible.

Sometimes it is making plans for a future you cannot guarantee.

Blood cancer has taken a tremendous amount from my life, but it has also made me fiercely aware of how valuable that life is.

I don't know exactly what my disease will do next. None of us get that guarantee.

But I am still here.

I am still a dad.

I am still learning.

I am still advocating.

And I am still planning for tomorrow.

For me, that's hope.