January is designated as National Volunteer Blood Donor Month by The American Red Cross. During this month, blood donations typically drop off due to holiday breaks from schools, inclement weather and winter illnesses. However, January is a month of great need for blood donations partially due to holiday-postponed elective surgeries and holiday schedules that preclude donors from giving blood. This and every January to come, a COTA family in Indiana will be forever grateful to the blood donors whose blood was used throughout their son’s transplant journey and his life-saving, and complicated, transplant.
Megan and Brian Riley of Washington, Indiana, are stepping into 2021 hoping and praying this is a year of no medical emergencies, no surgeries, no complications and no setbacks for their son, Lawson, who will be celebrating his 5th birthday in April — a dream come true for this young family.
Lawson was born at 26 weeks to first-time parents, Megan and Brian. He weighed 1 pound and 11 ounces and measured 13 inches in length. While scared many times during those first days of Lawson’s life, Megan and Brian watched their little baby in the Neonatal Intensive Care Unit (NICU) fight to gain weight, support his own body with adequate oxygen and consistently overcome many obstacles. Megan distinctly remembers the moment when she and Brian had stepped away from the NICU to pack some of their clothes and belongings because they were told Lawson was soon going to be released. While gathering their personal items, Lawson’s doctor called to tell them a new hospital x-ray was showing something troubling. Very soon after that June telephone call, Lawson was diagnosed with Necrotizing Enterocolitis (NEC), which is a very serious disease that occurs when intestinal tissue becomes damaged and begins to die. It most often affects premature infants, like Lawson. The tiny baby was quickly transferred via ambulance (while Brian and Megan followed closely behind in their car) to Riley Hospital for Children in Indianapolis.
At that point in their journey, Megan remembers the road ahead for their family seemed very long and bumpy. “When we first arrived at Riley we were told our baby would require multiple surgeries throughout the following week and told he had only a slight chance of survival,” Megan said. “We were given the choice of letting our baby go in peace or proceed with surgery. We opted for surgery.”
While the surgery was deemed a success, Lawson’s medical team was not sure he would pull through. After a long and stressful three days, the medical team was able to go back in and finish the surgery. The team of pediatric surgeons had removed 99% of Lawson’s intestines and placed a central line and G-tube so the two-month old infant could receive and excrete nutrients, fluids and medications. According to Megan, this was the official beginning of Lawson’s transplant journey.
By July 2016, Lawson had progressed enough to wear clothing and to be moved to an open crib. He had even been weaned off oxygen support. By the end of the month he weighed just about six pounds; however, signs of infection put him back on oxygen and added a multitude of medications. In August, Megan and Brian were trained in G-tube care, emergency G-tube replacement and central line dressing changes. Despite some troubling liver numbers, Lawson was proceeding in the right direction. On September 9th, after nearly five months inpatient with 24-hour nursing care, an eight-pound Lawson had passed the required medical tests to make the two-hour trip home. When they pulled into their driveway they carried in their precious baby boy along with medications, oxygen tanks, weekly blood and lab draw equipment and a rigorous nurse/therapy schedule … but the family of three was finally home.
For several months at home, Lawson grew and continued to progress. The family made a few trips back and forth to Riley to fix complications to his central line, but primarily they were at home. But on December 22nd a fever sent the family to the emergency room. The fear of an infection prompted Lawson to be admitted, once again, to Riley Hospital for Children. Lawson tested positive for RSV Type B and pneumonia, which kept the family of three inpatient at Riley until Christmas Day.
Megan and Brian had known for quite some time that Lawson’s long-term survival depended on a complicated, life-saving transplant. In January 2017, Lawson’s medical team told them it was time to officially start the process of transplant evaluation. Megan distinctly remembers a conversation with the Riley transplant social worker who strongly suggested they consider fundraising for the transplant-related medical costs they would be facing at the time of transplant and into the future. She told Megan to call the Children’s Organ Transplant Association (COTA) to see how they could help. On March 14th, Megan called COTA to learn more and ask many questions about how exactly COTA might make things a little less stressful.
On March 15th, Megan and Brian returned the paperwork and officially became part of the COTA Family. March 15th was also the day they received the call telling them Lawson had officially been listed with a 1A priority for a multivisceral transplant … a stomach, a pancreas, small intestines, liver and a colon.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On April 19, 2017, a COTA fundraising specialist trained a volunteer team of family members and for the COTA for Lawson R campaign. The COTA staff member walked the group of attendees through the entire COTA fundraising process and shared information about fundraising templates, fundraising guidance and the no-cost website the volunteers and family would be given for fundraising and promoting the family’s story. This group of family members and friends quickly got to work organizing fundraisers for COTA in honor of Lawson to help with mounting transplant-related expenses.
According to Megan, “From the moment we reached out to COTA, our hearts were set at ease. COTA provided hope to our family at a time when we were struggling to prepare ourselves for what was yet to come. Prior to Lawson’s transplant, COTA staff members talked to us and assured us they were ready to help. It comforted me to connect with other COTA families through the website we were provided. It was a blessing to read how others were navigating their transplant journeys … and it made me start to believe that we would make it through as well.”
“I simply will never forget the peace of mind I was able to achieve while reading other COTA families’ stories, especially their happy endings,” Megan said. “They allowed me to hope that Lawson’s story would also have a happy ending and that our COTA story might someday be a source of inspiration for another transplant family.”
The COTA in honor of Lawson R volunteers, a team of dedicated family members and friends, organized creative COTA fundraisers and within a matter of months, the team’s $40,000 fundraising goal was achieved.
Megan and Brian had often wondered if they would ever be given the chance to celebrate Lawson’s first birthday. On April 29th (10 days after their COTA Volunteer Training) they most certainly did. Megan remembers a smiling Lawson celebrating his first birthday with family. She also remembers that just a few days prior to this milestone celebration, Lawson developed a central line infection that put him back in Riley for a few days, but he was released in time to be at home for his birthday party.
But reality struck on May 30th when Lawson was admitted to Riley — this time with multiple GI bleeds. Megan and Brian were told he would not be released again until after receiving a transplant. Lawson had become quite ill from his Total Parenteral Nutrition (TPN) and he was severely jaundiced. According to Megan, “Luckily on June 7th we received the news we had both been looking forward to and dreading. Lawson had a match.”
On June 8, 2017, Lawson’s multivisceral transplant was performed at Riley. The one-year-old received a stomach, colon, intestines, pancreas and liver — and had his damaged spleen removed. His post-transplant recovery was very slow. Due to his premature lung disease, it took him three weeks to wean off the ventilator. He was then moved to Riley’s 9th floor for further recovery and inpatient therapy. While there, specialists started working with him in the areas of speech, occupational and physical therapy. Lawson was discharged on August 4, 2017.
“Lawson’s first year post transplant was pretty incredible,” Megan remembers. “He hit so many firsts. He learned to sit up, to crawl, to pull himself up and even to walk. We were simply amazed. Lawson started taking a bottle with formula and his feeding tube was removed.”
Today, four-year-old Lawson is making tremendous strides. His speech is greatly improved and he is beginning to speak in small sentences. Lawson is also counting to 10 and knows most of the alphabet. According to Megan, Lawson absolutely loves cars, trucks, tractors, buses … anything with wheels. And the best update? Lawson is the healthiest he has ever been. His last hospital stay was a year ago, which is the longest stretch he has ever gone.
Megan shared, “Through this incredible journey, COTA has been like an experienced friend to us. This whole transplant world was something neither my husband nor I knew much about. From day one, COTA has been there for us providing comfort, understanding and HOPE … when we needed it the most. The COTA staff is always trying to find new and better ways to help transplant families — not only financially, but also emotionally. Our son is now three and half years post transplant and COTA continues to offer support and guidance … and will do so for a lifetime.”
Megan and Brian remain hopeful Lawson will continue to grow and thrive and make tremendous strides while continuing to work with specialists in many areas. All of these services come with costs, but costs they do not have to stress about because of the generosity of COTA Miracle Makers. They are extremely thankful to know COTA funds raised in Lawson’s honor are available to help with these, and other, ongoing transplant-related expenses.
“It is a huge reassurance to us to know the funds that have been raised for COTA in Lawson’s honor will be there as he grows older and as we continue to have transplant-related expenses,” said Megan. “Even with the uncertainty in our world, it is good to know our family can count on COTA through it all.”