November 23, 2014 | by City of Hope
Joselyn Miller received a lifesaving bone marrow transplant at City of Hope two years ago. Here, she reflects on her gratitude as a bone marrow recipient and on giving back.
By Joselyn Miller
thank•ful adjective \ˈthaŋk-fəl\ : conscious of benefit received : glad that something has happened or not happened, that something or someone exists, etc. : of, relating to, or expressing thanksI was thankful for the perfect life I was living. Incredible childhood with ideal family. Wonderful high school and college experiences with amazing mentors and friends. Fantastic husband and children. Fun, adventurous lifestyle. I was thankful, but I had no idea what thankful truly meant beyond turkey, stuffing and pumpkin pie. I was about to get educated.
Throughout my 49 years, I avoided sickness like the plague. I never had a broken bone, I never had stitches, I never had surgery, I never fainted, I never had a freaking nosebleed. I had a massive phobia of needles (and snakes), and a doctor’s office was like a foreign land. Then in May of 2012, the perfect health rug was ripped out from under me.
My husband and über caretaker, Todd, took me to 11 specialists, but I had no diagnosis. Only after taking a chunk of my left quadricep for a biopsy did I find out what was causing my muscles to rigidify. (Cool word, right?) I was diagnosed with an extremely rare disease, eosinophilic fasciitis (Shulman’s syndrome), with only 300 documented cases. Ever. I began taking several medications in an attempt to combat the SS, but as my muscles started coming back to life, my blood counts were tanking. More and more and more and more meds did not bring my counts up. Over 100 blood transfusions did not bring my counts up for more than a couple of days. (I did, however, receive some top-notch serum, as I made my nurses promise that the blood in the bags hanging from my IV tree came from exceptionally good-looking and highly intelligent folks.)
I was sent to City of Hope when my local doctors could no longer confidently treat me. That was the best thing that could have happened. Dr. Pablo Parker and Dr. Stephen J. Forman, the nurses, and staff at City of Hope were beyond brilliant, compassionate and sincere. They let me know I was going to be OK. After a few bone marrow biopsies, it was determined that I had severe aplastic anemia, or bone marrow failure. I needed a transplant, so the search for a donor began.
An all-important question
I called my only sibling, my brother, Leason, and asked him if he would be willing to be tested as a possible match (a 25 percent chance).
Me: “Hi, how is Little League going?” Leason: “Great. I’m going to coach again this year.” Me: “Cool. I can’t wait to be able to come and watch. Hey, can I have your bone marrow?” Leason: “Absolutely. Anything.”
I went on to have a successful transplant on Dec. 14, 2012, at City of Hope, which saved my life. I had the easy part. Dr. Forman, Dr. Parker, Leason, Todd, my parents, my children, friends and family – they were the ones who dedicated their time and energy to get me well. They did all the heavy lifting. I was the fortunate beneficiary.
My doctors and caregivers at City of Hope channeled their expert medical knowledge and truly cared for me. My brother Leason, my donor, agreed to have his hip bone pierced with a needle, and didn't mind me equating the two of us (partial twins now) to Tweedle Dee and Tweedle Dum – even when I called dibs on Dee.
'Thankful has a whole new meaning'
I had loved ones who drove me to every appointment and asked all the right questions; got a "J" tattoo; did all shopping, cooking and medication coordination; drove to Duarte each of my 90 inpatient days to play homemade, beautiful and somewhat R-rated games and shoot Nerf guns at “chemo” and “mouth sores” targets with me; sang Christmas carols at a neighborhood surprise transplant send-off; wrote inspiring tags for my inspirational hospital room garland; shaved heads in solidarity; checked in daily; sent cards of support; made ceramic pieces with the "J" tattoo emblem; and so much more!
I cannot adequately express my gratitude to everyone who played a part in helping me kick these brutal diseases. Thankful has a whole new meaning.
But wait! (Insert annoying TV voice attempting to entice you into buying a Thighmaster.) There’s more! (He’s throwing in a second Thighmaster to seal the deal. As if.) Not only am I on the path to a full recovery, now fully aware of the meaning of thankful, I now have another reason for this gratefulness. My son, Rex, who swabbed his cheek to join the Be The Match Registry earlier this year at City of Hope’s Celebration of Life Bone Marrow Transplant Reunion, has been chosen as a perfect match for an unnamed 65-year-old man. He donated his stem cells at City of Hope on Nov. 18.
This gift, this honor to try to save a life, was bestowed upon Rex, and my family couldn’t be more overjoyed with this blessed opportunity. We’re talking a one in 600 chance. We’re talking miracle. We’re talking full circle. We’re talking karma. We’re talking life. We’re talking thankful.
Learn more about becoming a patient or getting a second opinion at City of Hope by visiting our website or by calling 800-826-HOPE (4673). City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.