Ben's Story

While we have shared stories about bone marrow transplant, none are quite like this one. Ben is a friend of our family and we have a tremendous amount of respect for Ben's dedication to his sister, his faith and his willingness to share his story -- and his bone marrow. Ben supports CellCycle with this contribution and I hope you will consider donating to CellCycle to help people like Ben, Julia, and their family. This family is totally dedicated to fighting blood cancer. I hope you will join them. 

I will never forget the day my Dad called me and told me one of the hardest things I’d ever heard: “your sister has cancer.” Tears were shed and words cannot describe the pain that was felt as I wrestled with the reality of what I was told.

My sister, Julia, has always been a very active, healthy and glowing young woman. She was living down in Los Angeles and was up here in Portland for a visit when we all got the news. She immediately was sent to the ER to begin intensive treatments for Acute Myeloid Leukemia (AML) including Chemotherapy and Radiation. It was a long, grueling process not only on her but the entire family. After months of intensive treatments and hospital stays the Doctors claimed that the Leukemia had left her body and we were ecstatic!

Julia returned back to Los Angeles, back to the sunshine, back to her friends and her job as a florist. Months passed and the cancer stayed at bay until one day, one of the routine tests that the Doctors at UCLA had been conducting came back, showing that the Leukemia had returned. Chemotherapy and radiation and hospital stays again became my sister’s reality. It was a crushing blow but she stayed strong.

UCLA ended up contacting me after all of these invasive treatments were not effective at ridding Julia of the Leukemia. I received a little, Styrofoam cooler with a couple vials for collecting blood and some instructions. A little back history: most any time I have had blood draws, tattoos or shots I have a tendency of passing out. I mean, hit the deck, waking up with smelling salts, pass out. So, needless to say I was not looking forward to going to a Hospital to have blood drawn. But I was willing to do absolutely whatever was necessary to possibly help my sister.

The blood draw was the beginning of the process to try and find as close to a biological match to my sister as possible to be a potential bone marrow donor. I admit that before being asked to be tested to be a possible donor, I had no idea what any of this meant. I learned a lot from https://bethematch.org/.

Some time passed and it was decided to transfer Julia’s care back up here to Portland where she would be treated at the world renowned Knight Cancer Research Center at Oregon Health Sciences University (OHSU). It was while Julia was at OHSU that a massive attempt was made to continue to find an identical bone marrow match for Julia. We learned that, as a biological sibling, I was most likely going to be the closest match but I was only something like 80%. People showed up to a huge event where a simple cheek swab was administered to hopefully find someone that was a little closer to a 100% match. I learned that there is a huge database of folks out there that have been tested and are willing to donate if they are a match for someone (thank you all for the willingness.)

After this huge effort to find a closer match, the Doctors decided that I would be the best match. I went back in for more blood draws (23 vials!) and a physical test to make sure that my body was able to handle what was about to ensue. I learned that we were actually going to be part of a Trial Study that involved multiple rounds of what is called “apheresis,” where they basically hook up the donor (me) to a machine with 2 tubes. One tube goes into veins in each arm, blood comes out, goes through this crazy machine which separates out the white blood cells (the ones that the person with Leukemia needs) and then the remaining blood goes back into the other arm.

The ‘study’ portion of the whole thing involved taking a first batch of my white blood cells, through this apheresis process (took a few hours in a hospital bed), sending them off to some lab where they modify them so that they have the ability to later “control” them down the road once they would be introduced into Julia’s body. Apparently they modify them so they can “turn them off” if they start “attacking” my sister. Completely crazy, mad scientist stuff we’re talking about…absolutely blows my mind.

All the blood draws and the first round of apheresis were complete without passing out! Next step in the process was for them to start injecting me up with a drug called Neopogen that makes your body produce more white blood cells. This was a four shot series over four consecutive days: still no passing out.

They had warned me that the Neupogen “could” cause your bones to ache….I love how Doctors can sometimes sugar coat this stuff. I had no idea just how bad this was going to hurt. It was this pretty horrible, throbbing pain that was mostly located in my lower back and hips that continued to get worse the more they administered the Neupogen. Being an extremely stubborn person, and a daily bicycle rider, I continued to ride my bike despite the pain I was experiencing (see stubborn.)

All of this pain was finally relieved when “donation” day came around. This was it, after the Neupogen had done its thing and my blood was chock full of white blood cells, it was time to get them out. One more blood draw to check the levels and we were good to go. Back to the Apheresis department, back to the hospital bed, back to the needles/tubes in my arms. We were told that it would “typically” take 2-3 sessions of apheresis to collect enough white blood cells but I was determined to get it all done in one day (see stubborn.) So I told them to “crank it up and let’s get it all.” Thankfully that’s exactly what happened. One, 3-ish hour session and they collected more than enough white blood cells!

The very next day I had the incredible opportunity to watch as those same white blood cells were IV’d into my sister’s veins; hoping and praying that this would be the solution to the cancer that had been plaguing her for far too long.

Fast forward 6months later to today and….my sister is CANCER FREE! All the tests continue to show that there is zero evidence of Leukemia.

I could continue to wax about what an amazing opportunity this was and how incredibly humbled I was by the whole process but this isn’t about me: Its about a beautiful, young woman who now has the opportunity to continue living through the hard work of the Doctors, scientists, and most importantly, God’s amazing grace!

 

Frank MooreComment