I spoke to Kathy today and she asked me to write an update to share what has transpired since John and his family returned to St. Jude.
As you know, John’s MRD test in June revealed that the leukemia he has been battling for 3 and a half years had returned. The MRD measures “minimal residual disease” and can detect one ALL cell among 10,000 to 100,000 normal cells in clinical samples. That is all to say that at this time, John’s leukemia is at a microscopic level. When patients with John’s type of leukemia (T-cell) relapse, the leukemia often “blasts off” within a matter of weeks. That is what the Hagen family was expecting and planning for when they returned to St. Jude.
When the team at St. Jude assessed John upon his return, they found that although his MRD is positive, he is otherwise stable and the numbers do not seem to indicate that his leukemia will be blasting off anytime soon. It could, in fact, be many months before this happens.
In the meantime, the family is trying to re-group and make the most of whatever time John has left. This is complicated by the fact that he remains bedridden and in need of full-time nursing care. Since returning to St. Jude, they have focused on continuing with physical therapy, having quality family time and finding smiles and whatever joy they can each day.
Once again, they find themselves at a heartbreaking crossroad, facing decisions no one should ever have to make. Right now, they are investigating various possibilities for how and where to spend the next few months—either at St. Jude or possibly back home in Charlotte.
Their prayer request remains the same—peace and comfort for John and healing in whatever form it may come. They can feel your love and prayers and even in these darkest of days, they are thankful for the never-ending support.