We've just received the heartbreaking, but still expected, news that Luke has developed myelodysplastic syndrome (MDS). MDS is a type of blood cancer typically seen in much older people. However, Luke and his two older siblings all inherited a genetic mutation, GATA2, that puts them at significant risk of developing blood cancer. Luke's blood counts have been going down, making us suspicious that he had developed cancer.

The treatment for this is a bone marrow transplant. This involves Luke staying in the hospital for about a month. During this time, one of us will stay with him at all times. He will receive high dose chemotherapy to kill off not only the cancer but also the rest of his bone marrow. Once his body is no longer making blood, they will infuse the new stem cells. After the inpatient admission, he will stay at the Children’s Inn at NIH for an additional 1-2 months to continue isolating while his immune system grows back.

We are so incredibly fortunate for the position we are in going into this difficult time. I will be able to take paid leave for the entirety of his treatment. His health care is provided at no cost from NIH. And we've been through this before with our oldest, so we know what to expect.

Still, we have some very challenging times ahead. We foresee additional expenses that we don't usually have. Prepared foods, childcare for our other children, cleaners for our home. Since Luke needs a dedicated caregiver at all times, or household will essentially function as a single parent household. Outsourcing as much as possible will substantially unburden or family to focus on what matters, loving each other.

Thank you for taking the time to read this. Even if you do not donate, we are touched by your caring and prayers if you feel drawn to it.