Mason Dilkes' Family Fund - Cancer Debt

Mason Dilkes was born in Baltimore, MD on March 6th, 1970 during a doctor's strike. His amazing mother, tiny but strong as a bull, had him all alone with no medical staff in attendance.

Mason was gifted artistically and intellectually, blessed with a quirky sense of humor and a love of science and nature, always curious about the world and always willing to help out, even if he didn't know you. He once let a homeless guy sleep in the back of his car. Probably ill-advised, but that's who he was.

We were married in the year 2000, and I never got over how lucky I'd been to meet and fall in love with this man. After 22 years of loving, fighting, good times, great times, adversity, creating three incredible kids, making many great leaps of faith hand-in-hand, and settling down on a farm we both loved and had big plans for, we'd grown together like siamese twins who share both a brain and a heart.

Here is Mason's cancer journey. It's a story that I want people to know whether you can donate or not, just reading to the end is appreciated. I want people to know what he dealt with to try and live, and how bravely he faced it all.

Two years ago, in March 2021, Mason was diagnosed with Multiple Myeloma during an ER visit for a sudden case of pneumonia. We were very grateful that the ER doctor caught the signs of Myeloma on the chest x-rays, the kind of lesions that had formed on Mason's ribs from the disease aren't always recognized for what they are. The doctor acted very swiftly to admit Mason to the hospital to treat the pneumonia, and they connected him with an excellent oncologist immediately.

Mason's cancer was advanced. A single gene had mutated which made his prognosis difficult to estimate, and a bone marrow biopsy showed that the cancer cells were crowding out half of Mason's healthy blood cells. His bones and immune system had been weakened. But with new treatments available there was a lot of hope to be found.

Mason had to quit his job as a bookkeeper to treat the cancer, chemo infusions and trips to Dana-Farber in Boston became his full-time job. I worked and accompanied him to the doctor whenever I could. We tried to maintain normalcy for our three children, who seemed fine as long as we acted like everything was fine. We treated trips to the doctor like dates, enjoying each other's company.

Mason's oncologists, including one of the top specialists in this particular cancer in the country, recommended hitting the myeloma hard with a "quad" - a combination of four drugs used at once - to beat the cancer down quickly and settle it into remission before it had a chance to adjust and resist treatment. This recommendation was rejected by Mason's insurance company as "unnecessary" and "too expensive", so he started off with a triplet instead. One of the pills he had to take was $6,000 a dose- yes, you read that right- and the insurance company rejected that too, but his oncologist found a way to make it work by going directly to the manufacturer and getting Mason on a limited discount program for the drug.

The cancer's growth was controlled (no remission) and he felt pretty good for about 7 months, and then it began to come back stronger. It nearly killed him right before Christmas of '21, landing him at Brigham for a few weeks to be hit hard with heavy-duty chemo (called DCEP) to try to get him stabilized. They managed to achieve stability by Christmas, and on Christmas Eve he came home. Worse for wear, but home.

His hair fell out. He bought smiley-face and Scooby-Doo caps to wear and said how nice it felt to be driving in the car on a summer day feeling the air on your scalp.

They began to plan a stem-cell transplant, a process that wipes your immune system clean of everything good and bad, including the cancer. Mason went in for the stem-cell transplant, a difficult process that included another round of the dreaded DCEP, in late winter 2021.

In 8 weeks, the cancer was back.

He had to go back to Brigham and have another round of heavy-duty chemo. He lost most of his kidney function at this time, and he began to have heart problems.

He was put on dialysis 3x a week (that's 4 hours in a chair, in a chilly room, unable to move). He now needed a cardiologist and a nephrologist added to his roster.

Despite all this, he kept his hopes up. There were more things to try. He insisted on dropping off and picking up two of our kids from their summer jobs on his dialysis days since the times coincided, and this allowed him to spend time with them. He still took me out to dinner sometimes, watched the news, followed his beloved Sumo wrestling on Youtube, made silly jokes, and stayed in the world with us in spite of his worsening health.

They began to plan CAR-T Cell Therapy for the fall and tried to control the myeloma until then as best they could with chemo. During that waiting time, he was hospitalized for Covid-19 which didn't do his heart any favors.

CAR-T is a very new cancer treatment, a process where they collect your T-cells and modify them to recognize and attack the cancer cells. He went into the hospital for this treatment just after Thanksgiving 2022. He went through heavy-duty chemo (again), daily dialysis to try and keep his kidneys functioning, and underwent the CAR-T infusion. He came home just before Christmas, very weak and tired. He required a wheelchair when going out most of the time now.

By the end of January the cancer was back.

We suspected it had returned even before the doctor confirmed it, because Mason had painful growths suddenly sprouting all over his torso, his lymph nodes swelling to the point that it was hard to eat, and a tumor growing visibly in his left temple. The cancer was back all right, and it was stronger and meaner than ever.

The bag of tricks was empty, his body was a sinking ship. We conferred with his doctors and Mason decided to go on a chemo regimen that most likely would not be effective for long, but might get him to see a last spring.

He just wanted to see spring. I can't tell you how much that man despised February.

During testing to approve the chemo, they found a pericardial effusion around his heart - the sac of fluid that is normally there has swelled and collected so much fluid that his heart could barely beat. Mason was sick of hospitals but agreed to be admitted to treat the effusion so he could begin the chemo. They said it would be a day or two, maybe three at the most.

It took a week to get him stabilized, a week where he was in a great deal of pain and couldn't sleep even with medication. His kidneys began to bleed from the pressure of the abnormal proteins the Myeloma generates. The drainage was successful but his heart rate remained high, 135 at its lowest.

He got out of the hospital on Wednesday. I managed to get him to the oncologist on Thursday for the chemo. It took everything he had to get there, but he wanted to try. By the time we got home, he was exhausted but was in too much pain to sleep. By Friday, he made the decision not to go to dialysis, which effectively meant he would probably die of kidney failure within days or even hours. I called the dialysis center and saved him a spot on Saturday in case he changed his mind, but he did not.

Mason died Saturday. February 25th, around 10 pm. He was at home with his family as he'd wanted. He knew he was leaving us and so did we. I showed him a video his wonderful sister had sent me earlier in the day telling him everything she wanted to say, we know he heard it. We told him we loved him and kissed him goodbye. Then he was gone.

That man went through absolute hell trying to stay with us.

Now I have to figure out how to live the rest of my life without my best friend, the father of my children, my siamese twin that left me with half a heart and half of a million wonderful memories, in-jokes, meaningful looks and shared experiences. The kids are taking it hard, but they are strong like their dad, and I'm trying to breathe some life back into this house for them even though I feel half dead.

He was mighty. He was funny. He was compassionate. He loved Lord of the Rings and knew several phrases in Klingon. He taught himself to speak fluent German. He wanted to learn blacksmithing and make swords when he retired. He loved this little farm and wanted to get a small cow once we were done with the fencing. He loved to make the kids laugh with Scooby-Doo impersonations.

I wanted everyone to know what he was like and what he went through. If you've read this, that's enough. If you can't donate, don't feel bad. If you can, anything will help make a dent and make it easier for us to get back on our feet.

We had no debt before this, just the car and the house. Now I have a total of $40,000 of extra debt from cancer treatments, travel expenses, putting health insurance premiums on a credit card when things got tight, energy bills from keeping the house as warm as I could to try and make him comfortable, and the list goes on. Poor health is expensive, and not just due to medical bills. Cancer has a lot of hidden costs.

I had to take a lot of time off from my commission-based job over the last 12 months and as a result I had to take a cut to my percentage, a cut that will take me two years to re-earn (it took me six years to get there). So in addition to the debt, my pay has gone down quite a bit. I have plans in the works to get a part-time job, but even with that, there's going to be financial hardship.

Donate if you can, don't worry if you can't...times are tight for everyone. But please do keep Mason in your heart, as his friends and family do, and if someday you need to be brave, think of him.

Love and thanks,

Alexandra Dilkes

Mason's obituary