Mighty Mason Run

Welcome and thank you for taking interest in Mason’s story. 

Mason was born with a rare blood disorder effecting 1-2:1,000,000.  Mason’s diagnosis came after multiple bacterial infections that got so bad it spread into his mastoid bone and broke down the bone causing a large lump behind his ear.  Mason had emergency surgery and had blood work done which showed that Mason was missing a white blood cell referred to as neutrophils.  Neutrophils are critical in fighting bacteria and other infections of the body.  Without them, the body is unable to fight infections and can be life-threatening.  Mason’s diagnosis, Severe Congenital Neutropenia (SCN) was confirmed through genetic testing and we learned that the only cure for Mason’s condition was a stem cell transplant, also known as a bone marrow transplant.  After consulting with the Oncology Team we elected to move forward with a transplant.

In early 2017 we began the search for a match and no one in the immediate family was a match.  The hospital found an unrelated match in Germany.  In May 2017, Mason was admitted and started chemotherapy in advance of the transplant.  After nine days of chemo Mason was given new life, he was given his new cells.  For the next six weeks, Mason was in isolation being cared for by his parents, doctors and nurses.  A few weeks post-transplant, we were expecting Mason’s bone marrow to produce cells but were not.  By week four Mason had bone marrow biopsy after concerns of a failed graft.  The biopsy confirmed the failed graft and that his bone marrow was dry.  The doctors confirmed that Mason would require an emergency second transplant but will come with significant risks including effects of more chemotherapy and Graft v Host Disease among other things.  During this time Mason was kept with us by getting daily blood transfusions of hemoglobin and platelets.

For the next week, the doctors worked to request more cells from the donor but advised that the cells would not be from the donor’s bone marrow.  Instead Mason would have a peripheral blood stem cell transplant.  His first was referred to an allogeneic bone marrow transplant.  The peripheral transplant comes with much greater risks as it has more impurities which cause complications but we had no choice.  By June, Mason started his second, more intense round of chemotherapy which included radiation and in July, Mason was given his new cells.  Within two months we started to see new cells, including neutrophils.  Mason had grafted.  During this time Mason was very sick and his body was broken down as a result of the chemotherapy.  By late fall Mason was well enough to go home but would continue to be treated.  In December of 2017 we began to notice severe rashes on Mason and the doctors confirmed that Mason had developed Chronic Graft v Host Disease (cGVHD).

Over the past two years Mason has fought increasing number of complications, primarily due to the medications but also multiple infections due to his suppressed immune system.  In late May 2018, Mason began a new treatment regime.  In mid-June, within a few hours Mason’s condition changed rapidly.  He couldn’t eat or drink anything and began vomiting.  We rushed him to the hospital and learned that Mason had a rare reaction to one of the drugs and some of his organs began to fail and had respiratory failure.  Additionally, Mason cells were being destroyed as he developed Thrombotic Microangiopathy (TMA).  Mason was placed on a paralytic and kept asleep for the next four weeks while being treated.  This was the closest we came to losing our son.

By late summer 2018, Mason’s body was improving and he begin building a tolerance to the paralytic and began to move.  The doctors began the long process of weaning the drugs (which continued into late 2018).  By late August Mason was fully awake and we began in-patient rehabilitation.  During Mason’s recovery the GvHD had spread and he developed cGvHD of the gut.  Since then Mason has been in and out of the hospital, has been on about ten different treatment regimens and continues to decline.  He has a growing list of complications that have occurred slowly.

Mason’s most recent treatment plan involves steroids, jakafi and about seven other medications.  His most recent diagnoses include osteoporosis, anemia, malnourishment and anorexia among all the others.  In February 2020 Mason was placed on NG for overnight elemental feeds.  By May 2020 with the help of his friends at Little Pops Mason began to gain weight and by July he even grew an inch.

In the three years since Mason’s first transplant, he’s the most stable he’s ever been.  He still has complications, mostly from extended steroid use, but he is what we would categorize as stable.  Our treatment focus for him involves trying to wean the steroids which in itself has become a major challenge because Mason is not producing his own natural steroid, cortisol.  Additionally, Mason received a neuro/psych developmental testing which concluded he is impaired.  Our focus now is to try to get him as much support as we can to ensure his continued development.  This too has become a challenge as a result of the active pandemic.

Through all Mason has been through, he is one of the happiest and energetic people you will meet.  He has a way of bringing great joy to the people he crosses paths with every single day.  There is not a day that goes by when we’re in public that someone does not comment about Mason.

Thank you for your support and for following Mason and his story.

-Chris and Kari Pritchett