Miracles Happen

Miracles

Happen... and now Jason needs another.

Be a Living Donor and a Second Miracle in a Local’s Life

A few years ago, Jason’s doctor began to notice a decline in his kidney function. They believe this damage was caused by a combination of radiation therapy and the bone marrow transplant he had received as a child. About six months ago, Jason noticed that he felt tired and fatigued. Within a few months his symptoms became worse, and he was rushed to the hospital. His kidney function was dangerously low. They put a catheter in his chest and put Jason on dialysis.

The kidneys filter toxins in your blood and convert unusable waste into urine. Because Jason’s kidney’s function is so low, he now needed dialysis twice a week. Even though the dialysis is necessary, it leaves Jason feeling exhausted and drained afterwards. Unless Jason is able to find a new kidney he will be on dialysis for the rest of his life.

A deceased donor’s kidney will only last 12-15 years, while a living donor’s will often last 20. Jason hopes a member of our community will step up and help save his life. If you donate a kidney to someone else on Jason’s behalf then Jason will be moved to the top of the list. “You don’t have to be an exact match for me,” Jason explained. “If you donate one to someone else in my name, then I’ll get a kidney. I understand a lot of people want that connection of donating it to someone they know, but really it's better- you’d be saving two lives.”

Jason Lee owns Jason’s Computer Services and has been providing fast, efficient, and competitively-priced computer related services to the Eastern Shore for well over 20 years. Located in the heart of Talbot County, Jason’s Computer Services offers computer repairs, virus removals, and diagnostic services with fast turnaround services. Part of their commitment to client satisfaction means they will either come on-site, remotely connect or allow you to drop off your equipment for repair, which ultimately means less hassle for you.

Beyond just repairing computers, Jason’s Computer Services also stocks and sells a large variety of high-end laptops and desktops and networking equipment for your home or business. New computer purchases can be made ready for you within hours along with same day data transfer and delivery. If you own a business and have a server that needs management, Jason’s Computer Services also offers server management packages, including nightly, weekly, or monthly. Jason’s Computer Services is located at 9231 Centreville Road, Easton and they can be reached on the web at www.jcscomp.net, by phone 410-820-9467 or at office@jcscomp.net.

Kidney donation is a relatively low risk procedure. Donors have to spend a few days in the hospital afterwards recovering. Afterwards, it's recommended they avoid physical activity for upwards of eight weeks after donating. Jason says his insurance will cover lost wages for whoever donates a kidney on his behalf.

Jason has been frustrated with the bureaucracy of the donation system. Multiple people have tried to register to be a donor on Jason’s behalf only to be declined for unclear reasons. Lori, who donated bone marrow to Jason, applied to be a donor weeks before we spoke, and Jason says she hasn’t even received a call back.

Despite the problems with his kidney and the setbacks in getting a new one, Jason remains determined. “You gotta be optimistic,” Jason told me, “If you get your brain into the thought process of doom and gloom, it's not gonna be good for anybody.”

Turn the page to read about Jason’s first miracle and please consider becoming a living donor and offering Jason a second miracle. To learn more about how you can help Jason and others, visit www.ummclivingdonor.org. (Article on the following pages reprinted from the Shore Update’s 2018 HEALTH UPDATE.)

By Marcus Hoffman

The Lees began 1985 as a typical American family. Holley Lee was a school teacher, and her husband Jimmy Lee was a pressman for Waverley Press. Together, they had one beautiful, blond-haired four-year-old son named Jason who Holley describes as being happy and bubbly as a child. That year, Jason bumped his head on a dining room table as energetic kids often do. When the bump failed to heal and began to change colors, Jason’s family became concerned and took him to the doctors to figure out exactly what was going on. What began as a seemingly innocuous injury quickly developed into every parent’s worst nightmare.

Before the week was over, Holley would come to find out that the discolored bump on her son’s head was caused by leukemia. She was called back into the doctor’s office after some tests were run and was immediately greeted by large stacks of papers and a nurse who took Jason away to color.

“A knot formed in my stomach and I could feel my heart racing in my chest the moment they took him away. I knew something was wrong,” she said. At this point in sharing her harrowing story with me, her lively and happy demeanor grew darker, and she became visibly sad. “The first thing I said when the doctor said leukemia is… ’Is my son gonna die?’ That’s all that came out of my mouth, I don’t know why. I didn’t even know what leukemia was. I just asked ‘Is my son gonna die.’”  Her son Jason was diagnosed with not just one, but two different types of leukemia… ALL and AML, two of the most common variants. While Holley may have felt hopeless at the time, the Lee family would come to find out that...

Miracles Happen.

Over the course of the next few years, the Lees would find themselves in a fight for Jason’s life while in and out of hospitals; going back and forth between home, John Hopkins, and Milwaukee, Wisconsin. In this short period of time, Jason relapsed, returning home only to have to return to the hospital yet again within a matter of weeks. Holley somewhat solemnly quipped that during this period of time, she didn’t even unpack her bags when she got home, knowing she would have to leave home and return to the hospital before the month was even over.

Jason was receiving heavy doses of chemotherapy, a common chemical treatment for cancer with a myriad of side effects that caused him a great deal of pain. Jason’s condition was growing more dire as time passed, with seemingly no indication that he would ever get better.

Despite being a child with cancer, Jason was still very much a child. Jason’s family strived to retain normality in this abnormal situation. Holley recounted a time in which Jason was separated from his family for treatment by a glass wall. “Jason looked through the glass wall and kept crying out to me ‘Mommy, I’m scared.’ I realized I had to figure out a way to make him feel better, to make him feel like a normal kid. Jason loved Vermont, so we started taking about Vermont. My parents had a house up there and Jason always loved it. Sometimes you just have to focus on the little things.”

It can be easy to forget that children suffering from cancer, or really any other serious disease, are still at heart just children. They fail to fully comprehend the gravity of the situation in which their own bodies have placed them. To this day, Jason struggles to fully digest what he went through as a child; he says that he “had no idea what having leukemia even was” and that “even today I still can’t really grasp the concept… you look back on it through what you hear and what you see in photos, and it doesn’t even really feel like me… it feels like an entirely separate person… I say that’s not me; I wasn’t there. It’s like part of me died and I was reincarnated.” Jason speculates that his mind compartmentalized the time of his life in which he had cancer to cope with the pain and fear it caused his younger self and his family.

Leukemia causes a buildup of malignant cells in the bone marrow, and Jason needed new bone marrow now more than ever. There are a variety of similarities required to be a bone marrow match, and it can often be difficult to find someone who fills all, or even most, of the criteria. After his relapse in February of 1986, they got Jason back into remission and eventually stable enough to begin searching for a donor so they could aim for the transplant in September of 1987.

Without any possible donors in Jason’s family, Jason’s doctors turned to the National Bone Marrow Registry (now called “Be The Match”) for help. Formed one year prior to his diagnosis, the National Bone Marrow Registry had much fewer people signed up than there were for blood donations. The odds of finding the much-needed match were bleak, and even if they did find someone with the matching bone marrow, they would have to agree to go through an invasive surgery for the transplant. In this seemingly hopeless set of circumstances, the Lee family would come to find out that...

Miracles Happen.

Lori Groen was a postal service worker from Milwaukee and a regular blood donor. She was told about a new program that was seeking to match people in need of bone marrow transplants. Eager to help, she signed up to be put on the registry. Participants had a swab of spit taken from them which was put into a database so they could be contacted if they found a match.

In 1987, two years after Jason was diagnosed (and only one year after the program itself had begun), Lori was contacted and asked if she would be willing to donate bone marrow to Jason. She wasn’t even a perfect match, missing multiple of the criteria that matches were supposed to have, but Jason’s family and doctors were running out of options and time. Jason’s family signed a piece of paper saying that Jason had a “zero to one percent chance of survival after the transplant.”

These low odds of survival were because of how new the procedure was, how severe Jason’s leukemia was, and because they failed to match bone marrow types completely. Jason’s mother Holley reflected that “as scary as those low numbers were, it was like we didn’t have a choice. There was a zero percent chance of survival if we didn’t take the opportunity, so we just had to

do it.” Many people would take a one percent chance of survival to mean that there was no hope of survival, but stripped of options, the Lee family had no other choice but to pray for the best.

Did you know?

Leukemia is the most common variety of childhood cancer.

Back in the eighties, participants of a bone marrow transplant had to undergo a fairly invasive surgery in order to give their bone marrow to those in need. While many people would have been hesitant to undergo surgery to help a complete stranger, Lori says she only hesitated because she was not a perfect match and didn’t want to let Jason down in his time of need. In retrospect, Lori says that she feels as if she “had no other choice” but to undergo the surgery to give Jason that one per

Jason pictured with his mom and dad, Jimmy and Holley (left) and bone marrow donor Lori Groen and her husband Boyd (right).

cent chance he needed to survive. Jason and his doctors now credit Lori, a complete stranger, with having helped save his life.

Over the next few months after the transplant, Jason continued to struggle, and needed a blood transfusion of white cells from Lori. While the recovery may have been rough, Jason has been thriving after multiple decades. “Don’t you ever forget that miracles happen every day” Holley reminded me yet again with a smile.

Now, thirty years later, Jason has yet to relapse and lives a happy, healthy live. He owns his own business; a computer consulting firm in Easton aptly named “Jason’s Computer Services,” which he claims to have started because he “just loves to help people.”

He has recovered almost entirely, thanks to the doctors who treated him and Lori’s bone marrow donations, but still has a few residual symptoms from the chemotherapy he received. He is thankful to not only be physically healthy, but also mentally healthy. “So many people deal with these diseases and problems and they come out miserable,” Jason explained, “but they don’t take the reward of life and live it to the fullest. So many people recover from cancer and spend the rest of their lives worried that it could happen again. But anything can happen. I could have gotten hit by a car on my way to meet you today, but I don’t have any choice besides to remain positive.”

Because there is always a possibility of a relapse, Jason says he is not cured of leukemia but in remission. Jason is currently the longest living survivor of a bone marrow transplant from someone outside of their own family. He credits Dr. James Casper, the doctor at the Milwaukee, Wisconsin’s children’s hospital, and the wonderful nurses there as being incredibly important for the successful transplant and his subsequent recovery. Jason is also

passionate to point out that he, “...really wants people to see and know that they saved my life and did something very experimental and cutting edge. Many children around me died; I am extremely lucky to be alive today.”

Jason strongly encourages anyone who is considering donating to do it. “My story ended well and I’m happy to be alive,” Jason explained, “but none of it really matters if others don’t donate. Everybody these days talks about how important it is to donate blood and bone marrow, but not nearly enough people do it.” At least 3,000 people die each year because they cannot find a matching donor (Institute for Justice). By simply applying for the registry, you have the very real opportunity to save a life.

Lori Groen also encourages anyone who is considering donating blood or bone marrow to get in on the chance to help out someone in need. While in the eighties the procedure to give marrow was very invasive, today it more closely resembles giving blood. Lori says that it feels “amazing to know that just an average person like me can do so much for someone. I just find it absolutely incredible that such a small part of my body that reproduces itself on its own could do so much for another person.”

Both Lori and Jason have remained friends to this day, and they consider the friendships that donations can create to be just another positive aspect of programs like Be The Match. While Lori claims that she “is not a hero,” she at the very least helped to make a miracle happen. You can help make a miracle happen yourself by registering for the National Bone Marrow registry at the https://bethematch.org/. The process is easy, simple, and, most importantly, can save someone’s life.

Interested In donatIng bone marrow to save a lIfe? Here Is How you get on be tHe matcH’s regIstry:

• Doctors are primarily looking for patients between the ages of 18-44. If you don’t fall into this age group, you can check out https://bethematch. org/ to discover other ways to help out!

• Those who are eligible to join the bone marrow registry are sent a swab kit by mail for a spit sample. You then send your kit back to Be The Match to be put onto the registry.

• Of everyone put on the registry, only one in 430 is ever called upon to donate. This is because there are so many various genetic markers necessary for successful bone marrow transplants.

• If you are called for a donation, more blood tests will be done to ensure you are truly a perfect match. If you are, then you go on to donate and have the opportunity to save a life!

If you want more information you can visit  https://bethematch.org/ or call 1 (800) MARROW-2