I made a promise to Josh and Brooke 275 days ago that their dad would get the most advanced care possible. So, on Monday, we arrived back in Baltimore for our final leg which is a 30-day clinical trial of a new cancer treatment called “immunotherapy.” While PENN is a pioneer in immunotherapy, the clinical trial best suited for Paul is at Hopkins.
You may wonder, if Paul is in remission and had a successful transplant (thanks to Josh) why immunotherapy? Unfortunately, the bone marrow biopsy test for ALL is not perfect and both our PENN and Hopkins physicians have enough experience to suspect that some leukemia cells may remain and can’t be detected.
So, that leads us to the promise of immunotherapy and its potential power to cure cancer. What is immunotherapy? Simply put, immunotherapy is where your own immune system is re-engineered to detect and kill cancer cells. In Paul’s case, Josh’s T-Cells (the body’s natural cancer fighting cell) will be modified so they can detect any remaining and hidden leukemia B-Cells and “mop them up.” I imagine that the leukemia B-Cells will light up like a Christmas tree allowing Josh’s T-Cells to see them and then destroy them.
The treatment is straightforward. Paul will be tethered to an IV bag filled with an immunotherapy agent, affectionately called “Blina,” 24-hours a day for 28 days. Paul will be inpatient the first 8-10 days to monitor for side effects. After that, we will return to Hopkins every other day for 20 days as the IV bag only holds enough Blina for 48 hours.
Putting the puzzle together it now makes sense as to why our doctors referred to Paul as having “bad ALL” or “high-risk ALL” and the FAA considers ALL “an unstable cancer.” But, the promise of immunotherapy combined with our outstanding treatment from the gifted clinicians at PENN and Hopkins gives us hope that Paul can be cured.
Even during the darkest and hardest days, I have been in awe at how Paul has remained positive; at Brooke’s strength and determination to press forward; and at Josh’s “we can do this” attitude. I have no doubt that we have persevered because of the love and support of our family, friends, and colleagues who have helped us in ways that are both known and unknown.
Wishing you a Thanksgiving filled with joy, laughter, and treasured moments with family and friends.
Love to you all,