BY MATT FRANZBLAU
Federation Communications Director
When Atlantic Beach resident Leya Parker received her Leukemia diagnosis in October 2013, she was actually quite relieved instead of being in shock or dismay. That's because Parker had been suffering from bizarre and unusual symptoms leading up to her fateful day in the emergency room in nearby Baptist Hospital.
"My husband, Chip and I have four daughters and they are all college aged. During the summer previous to my diagnosis, I think we had like six moves between getting the girls in and out of sorority houses, apartments and we were closing on our dream home out in Atlantic Beach," Parker described of her situation leading up to her symptoms. "I was really, really tired but I just thought it was from everything that was going on"
Once the whirlwind of packing and unpacking finally settled down, the then 46-year old was still not quite able to catch her breath as she continued to lose energy and was in need of rest at any given moment.
"I had a party in August and I was extremely tired and people were starting to notice that my eyes were swollen," she remembered. "Then we went up to New York in September to help celebrate my parents' 70th birthdays. I remember having a really hard time with runs and I was unable to stay awake during Broadway shows, so I thought age was really starting to work against me."
Finally, tired of being tired and not knowing what exactly was wrong, she took matters into her own hands and went to the doctor when she returned home to the Sunshine State. After some preliminary tests, Leya's doctors said that they thought she had mono, but with persisting and often intense symptoms, Parker knew it wasn't that which was plaguing her.
"I was waking up sweating, my bed was drenched so I thought perhaps it was because of a female change," she explained of one of her symptoms.
In order to rule that out, she made a trip to her GYN and after a simple blood test, her search for answers continued. The one-time very active middle aged woman was becoming more sedentary and in the process desperate to find out what was exactly wrong.
"I was so miserable and scared and by this point I cancelled a trip that we had planned to California because I didn't know what was wrong with me," she said.
After an MRI of her shoulder, it was revealed that Parker had signs of either Multiple Myeloma, Lymphoma or Leukemia.
"I woke up one Tuesday morning not too long after that and I felt like I had lost a fight. I could not get out of bed," she remembered of her terrible ordeal. "My husband and I usually rode to work together but I told him to just go without me and I would have Vikki, one of my neighbors take me to the hospital."
That decision was one which ultimately in hindsight ended up saving her life as she arrived in the Baptist Beaches' emergency room.
"I just wanted someone to tell me either you are a hypochondriac and to just drop it or that I was really sick, because at that point I just needed answers." Unfortunately for Parker, it was the latter as opposed to the former.
"I waited and waited at the hospital and was eventually told that they didn't want to admit me," she explained. "So I sent a text to my friend Rocky who is an oncology nurse and she immediately texted me back and told me not to leave the hospital until running a specific blood test which had not been administered to me at that point."
Sure enough once the final tests were run, Parker was able to confirm what she had suspected for quite some time now. She was diagnosed with Acute Lymphoblastic Leukemia (ALL) and following a bone marrow biopsy it was discovered that she was also PH+, which is a mutation of ALL.
"The results came back and it said that I had a 98-percent blast of Leukemia in my blood, meaning I was covered head to toe," she said. "My husband asked my brother, who is a surgeon, what would have happened if I would have kept going and he said that I would have up and died probably within in 10 days."
Now that the mother of four was officially diagnosed, there was no time to contemplate treatment as she was transported via ambulance to UF Health Shands Hospital in Gainesville. There she began taking her first few rough steps in hopes of a full recovery and that meant frequent chemotherapy treatments and stays in the hospital.
"I had so much leukemia that the doctors didn't think they were going to be able to put me in remission during the first round of chemotherapy," she remembered. "As expected, I didn't go into remission so a week and a half later I received a mack daddy dose of chemo, to which this day I don't think I have fully recovered from."
At the very beginning of her rigorous treatment, Parker was told that in order to legitimately beat this heinous disease, she would need to have a stem cell transplant, because she had ALL and was PH+.
"My brother, Aaron flew down immediately from Blacksburg, Va., to see if he could be my donor because he knew I would need a bone marrow transplant," she said. "He's my brother so that's who they would test first but unfortunately he was only half of a match."
After her brother's test, a preliminary sweep through the donor database produced an initial 13 matches which were found through an organization called Gift of Life. Gift of Life is a Bone Marrow Foundation formed in 1991 following a successful registration drive to save the life of Jay Feinberg, a then 23-year-old analyst with the Federal Reserve.
"Jay started it when he needed a transplant 20-years ago. Back then he was told there would not be match for him because he was Jewish and there were not enough Ashkenazi Jews to donate because of the Holocaust," Parker explained. "Here we are 20-years later and I had more than a dozen potential donors because they were probably all from some sort of Jewish background."
Even though Parker had more than a dozen prospective donors, she only needed one match to save her life. That donor ended up being Jonathan Struhl, now 26-years old and a New York City venture capitalist and entrepreneur, who's day of good deeds turned into a lifetime of fulfillment and friendship.
That particular day was back in 2010 during a recruitment drive at a charity event for an Israeli orphanage, which Jonathan helped organize. The kosher city dweller was contacted by the Gift of Life organization and asked if they could set up shop at his event and conduct swabs to add to their mounting database.
"At that event is when he was swabbed," Parker explained. "So three years before he was contacted to be my match is when that initially happened."
Fast forward a few dozen months and Jonathan had no idea that his simple act on a fall day in New York would turn into a life saving action for a woman more than a thousand miles away. With a specific match now in sight, Leya was told that she in fact had someone who could be her donor and that he would be ready for the procedure in late February.
"I was not allowed to know anything about my donor except their sex and approximate age, so for a long time we thought he was from Germany and nicknamed him Hans, she recalled. "Later I thought he was from the south and called him Bubba."
The definite information Parker was able to find out about her donor was that they donated on the 24th of February and she would receive them on the 25th. Once the procedure was successfully completed, Leya had a new lease on life and in all reality a new identity when it came to her genetic make-up.
"The day I received my stem cells, my girls brought a cake that said 'happy birthday' and had a zero on it because I am considered to be a new born," she explained of her unique circumstances. "
As a result of the transplant, Parker and Struhl assumed a near perfect identity, meaning the two's DNA was now practically the same. The numbers reflect this as she is 100-percent Jonathan when it comes to her B Cell count and 98-percent him as far as it pertains to her T Cell count.
"My doctors basically told me that this was it and that they were confident that if I took the transplant, this would cure me," the one time cancer patient said. "They don’t think I will ever get Leukemia again because Jonathan is such a strong donor."
This made Leya's and Jonathan's first meeting all the more special when the pair attended the 15th annual Partners for Life Gala in Struhl's backyard of the Big Apple this past June, just a year and a few months removed from Leya's life saving transplant. Up until this point, the two were only permitted to exchange very basic letters and were required to leave very basic information out as the content of them were screened before being sent out.
"Jon walked up with a bouquet of flowers and gave me a huge hug," Parker recalled of their emotional meeting. "I just cried and could not stop hugging him."
The two then took turns reading their short speeches they had prepared for the event, with Jonathan going first and then Leya to follow. The donor first shared his message with the crowd and his recipient, from a letter he wrote to her many months before.
A portion of it read, "I believe in the power of prayer so every morning and every night I will pray for you. I pray that you will be able to live life to the fullest. You inspire me, you motivate me and for that I thank you."
Once all the other donors and recipients being honored that night had their time in the spotlight, Jonathan and Leya took some time to get better acquainted with one another, as both families stuck around and talked at length for nearly two hours.
"It was just so fantastic and we had so much in common," Parker said. "Both of Jonathan's parents graduated from the University of Florida. He is also of Polish and Russian descent and I am Polish, Russian and German, which are just a couple of the commonalities."
But it was learning about the donor's experience which had a profound impact on Leya and her family.
"You always think of the recipient in these situations, because it's like 'oh my god this person is dying', Parker said. "But after meeting Jon and the other families at the gala, we realized that being a donor is as equally as important to them as it was for me and the other recipients."
The bond that the unique pair now shares is more than just a psychological connection, it's an emotional one as both Leya and Jonathan are now for all intents and purposes, family.
"I don't know whether or not to call him a son or a brother, because I am the same age as his mom," Parker describes of her now unique relationship with Jonathan. "I've never had a son but we are technically related now because of blood."
The lifelong bond fostered between Parker and Struhl is one that repeats itself numerous times through a given year as prospective donors are matched with recipients through the Gift of Life Bone Marrow Foundation by way of the donor database. It takes just a swab of the check and $60 to be put on the list and the organization is always looking for young adults who are able and willing to be tested to see if they are indeed a match. Funds are available for those still wanting to be swabbed but who cannot afford the start-up cost.
To obtain a swab kit from the Gift of Life Bone Marrow Foundation, or for more information on the organization and its mission, log on to giftoflife.org. To view a blog documenting Leya's courageous journey on the road to recovery visit lparkerblog.com or go to http://bit.ly/1HNUR3w for a special article on her and Jonathan's meeting which was published in the New York Daily News.