“You must go to Children’s Hospital now.”
Ninth grader Patrick McLaughlin was surprised, but followed his mom’s lead, who calmly drove to the Emergency Department while disguising her fear and confusion.
Earlier that week, while Ellie was on a business trip, her elder son, Liam, called. “Mom, Paddy’s still sleeping after early dismissal.” It was 8:30pm. At that moment, she knew that she needed to take him to the doctor. She flew home as soon as she could, picked Patrick up at track and field workout, and dashed to the pediatrician’s office.
The pediatrician stated that everything “looked normal” with the preliminary tests and it was most likely a virus. Ellie pointed out the red spots on his feet and insisted on an expanded blood panel. The results of the blood panel, no platelets and RBC of 2, alarmed the staff. All the nurses and doctors poured into the exam room and directed Ellie to head directly to Boston Children’s Hospital Emergency Room. “We think it may be leukemia”. Ellie’s heart dropped and while her mind was racing, she tried her best to remain calm so Patrick would not see her panic.
Upon arriving at the hospital, they were quickly wheeled to an exam room. After an emergency bone marrow biopsy, Patrick was admitted. He was sent to a private room. Patrick was typed for blood products and received his first of many transfusions. On Day 2 Patrick met his hematology team, learning he did not have leukemia, but Severe Aplastic Anemia (“SAA”). Ellie recalls letting out a breath and saying to herself, “Well Thank God it’s not cancer”. She assumed he just needed more iron, but the team explained it has nothing to do with iron levels and is a serious blood disease.
Patrick’s diagnosis was in May. As the weeks progressed, he developed symptoms common to SAA such as bleeding gums and petechiae, requiring platelets and blood transfusions once or twice each week. He was not able to return to school to finish the year and had to be isolated at home, away from extended family and friends. Despite missing the last six weeks of school, Patrick was promoted to his sophomore year of high school, but he was required to continue isolating, missing beach time with his friends.
Ellie, her husband Ray, and Liam were in survival mode. Caring for Patrick while keeping everyone calm and reassured was Ellie’s job. She had faith in the medical team that was caring for her son, so she mirrored their confidence, and leaned on them when she felt herself falling apart.
Patrick continued receiving outpatient infusions in the cancer clinic, but he had unique events that worried his care team. His body seemed to “chew up” the infusions nearly as fast as they were given. The specialist prescribed Antithymocyte Globulin (ATG), requiring another inpatient stay at the hospital. During this time, Ellie asked to speak with other families who were battling SAA and the team introduced them to two ATG patients. From there a beautiful friendship of three families was born. They immediately started emails and text chains and would meet up in person whenever possible and continue to be an essential presence in their lives.
Having heard about bone marrow transplants, Ellie asked the specialist if Patrick should have this treatment instead of ATG. The specialist had good results with ATG, and it was her opinion that, being the least invasive, it should be the first line of treatment. Patrick received ATG treatment during the first week of July and tolerated it well with only the usual side effects of fevers, itching, rashes, and shortness of breath. Upon discharge, he went home to wait for his body to do its job: restart his bone marrow and begin blood production, while continuing transfusions. There were multiple visits to the ER plus hospital admissions over the next few months due to fevers. In late October, after being admitted for a high fever, the specialist visited Patrick and Ellie in their room: the ATG treatment was not working. Bone Marrow Transplant would be the only hope for Patrick.
In November, Ellie and Patrick met the BCH Bone Marrow Transplant team. They explained the harsh reality of transplant, with the worst outcome possible being death. For the first time, Ellie was afraid for her son, realizing this was a life-and-death issue. It was years later that Ellie admitted to Patrick those fears and Patrick, in turn, said it was the first time he thought he was going to die.
With the severity of his condition, Patrick and Ellie realized he wouldn’t return to school that year. With the transplant scheduled for January, the family began their vigilance of health safety during the Christmas holidays. Recognizing the benefit for Patrick to participate in family gatherings, family celebrations were held outside, everyone needed to mask up and COVID test --- something everyone did willingly for Patrick.
Disappointingly, Patrick’s brother Liam was not a match. With 300 other possible matches available, the specialists were able to find the best match from the three finalists, one of whom lived on the East Coast of the United States. January 4 was admission day, and January 12 was transplant day, or “Day 0” for Patrick.
While waiting for January 4th, Ellie learned of a “a friend of a friend’s daughter” who was diagnosed with Aplastic Anemia years before but went directly to transplant. This connection helped Ellie prepare for the transplant process through the eyes of a mother, bracing for the difficult days of chemotherapy, radiation, and transplant which were going to be grueling for Patrick.
With transplant came continued isolation for Patrick. The days were long and the nights even longer. At this pediatric hospital, most of the patients on the transplant floor were young children, none with Aplastic Anemia. The toys and games in the common areas were designed for children far younger than Patrick. Ellie suggested to hospital staff that teens needed a different environment, and she repeated that concern over at the cancer clinic, where Patrick would sit amongst toddlers receiving care. Knowing that feedback was crucial in helping other families with sick teenagers, Ellie joined the clinic’s Parent Advisory Council to give back to the organization that gave such great care to Patrick.
The first 100 days went well for Patrick. Later, he contracted Epstein-Barr Virus and suffered from Adrenal Failure. He suffered from migraines and dehydration. He also developed GVHD of the skin and eyes, so he had to stay out of the sun, protecting his skin while outdoors. He had COVID twice in the subsequent months, requiring hospitalization. Despite these setbacks, he attended remote learning classes and never fell behind in his courses.
Finally, Patrick was cleared to return to school in March of his Senior year. He graduated on time, but he missed all the events common to high schoolers in his town: Prom, Homecoming, sporting events, and more. For him, the feelings of isolation continued as he watched his friends go to the beach, which was prohibited for him due to skin GVHD. His time to socialize was primarily through Xbox with his friends in the evenings, and an occasional Sunday football game with friends, at home with windows open and distanced seating. He felt that he missed most of the high school experience as well as time with his friends, but he was able to walk across the stage at graduation and receive his diploma.
The highlight of March was meeting his donor in person. His donor, from Arizona, flew to Boston with his mom and his fiancée. He spent the weekend getting to know Patrick, who is alive today because of his selfless act of being a bone marrow donor. The bond they have is immeasurable and the families are forever connected
During that summer, Patrick worked indoors at the Boys and Girls Club, teaching and leading athletic programs. He continued monthly infusions of IVIG and was fully weaned off all his medications and immunosuppressants. The next step for Patrick would be attending college in the fall to start the next chapter of his life.
What is Ellie’s perspective after the past few years? She is worried as any mother would be, but she knows that the goal of a long and happy life for Patrick is now achievable. She wants to help other families deal with this “Long Disease,” knowing they are desperate for information and the knowledge that only comes with lived experience. “You don’t know how many people you have in your life until something like this happens,” Ellie says. She is intent on giving back and paying it forward, sharing her insights with other families just like her own.
Ellie believes there is “unity in community”. Patrick and his family were fortunate to have a town that showed up in droves to support Patrick by following his story on Instagram, hosting blood drives and basketball tournaments to raise funds for the hospital, and the many meal trains, gift cards, and other gestures that meant so much to the family. Patrick received handwritten cards from the elementary students. His friends all donated winter hats to keep his head warm during chemotherapy. Ellie’s inbox was flooded with “Paddyisms,” photos of any “Paddy” sign be it a pub in Ireland, Australia or Boston or handwritten on the edge of running shoes. Patrick was always on everyone’s mind as he fought the battle to survive.
“You don’t know how many people you have in your life until something like this happens,” Ellie says. She is intent on giving back and paying it forward, sharing her insights with other families just like her own.