November 1, 2018 — November 15th is World Cord Blood Day, which is a day used to highlight the fact that more than 35,000 cord blood transplants have been performed worldwide since 1988 to treat more than 80 life-threatening diseases. Yet cord blood is still thrown away as medical waste in the majority of births nationwide. An Arizona transplant family is extremely grateful the cord blood they needed to save their daughter’s life was donated, instead of being discarded, literally in the nick of time.
Sophie Lee was born in February 2010 and adopted by Judy and Tony she was 14 months old. They were beyond thrilled to finally meet their beautiful daughter and very anxious to start their new family life together. According to Judy, Sophie was always an energetic and fun-loving toddler. She was always on the move and very curious about everything around her. Strong-willed and stubborn are also words that Mom Judy used to describe this charming and charismatic little girl.
Right around the time Sophie turned 19 months old the Lees heard her crying out in the middle of the night due to serious leg pain. When they tried to wake her they realized she was struggling to stand or walk. She did settle down and fell back asleep. The next morning their toddler seemed perfectly normal and was no longer complaining about leg pain.
As time passed, however, their beautiful little girl would tell Judy and Tony about periodic leg pains but her complaints were intermittent and were not consistent in location. Nor were they associated with particular activities. The one thread of commonality was time of day. Sophie’s leg pains typically started in the evening either at dinnertime or bedtime. She was thoroughly checked by the family’s pediatrician and a rheumatologist but everything seemed to be fine. The Lees thought these pains were likely growing pains and decided not to keep worrying.
At Sophie’s five-year-old medical checkup, her pediatrician noticed that some of her white cell counts and blood cell sizes were out of normal range. Coupled with Sophie’s periodic leg pains, she was referred to a hematologist for more tests. The first series of tests he ran showed normal results, but because Sophie continued to complain about pain, he decided to proceed with a bone marrow aspiration. Within a few days after the test, Judy and Tony were given frightening and unbelievable news. Their little girl was diagnosed with a genetic bone marrow disorder called Myelodysplatic Syndrome (MDS), which impacts a person’s ability to produce enough healthy blood cells. Some people diagnosed with MDS go on to suffer with leukemia.
Only a couple years prior to Sophie’s MDS diagnosis, Good Morning America’s Robin Roberts brought much attention to this disease when she publicly announced she had been diagnosed with MDS and would be taking a leave of absence to undergo an intense and debilitating treatment regimen. At the age of six, Sophie would likely be facing the same treatment protocol to save her life. All of this was a huge shock to Judy and Tony who kept returning to the gnawing question, “How did this happen?” Sophie had no prior symptoms of frequent or prolonged colds or infections that would cause them to seek medical counsel. The Lees were told Sophie’s only treatment option was a bone marrow transplant that needed to be done sooner instead of later before her MDS manifested into leukemia. The Lees knew there was no other choice.
But what the Lees did not know was finding a donor for their daughter was going to be very complicated. According to Judy, “Sophie’s search for a bone marrow match, despite a worldwide search and local effort from our family and many friends, proved to be unsuccessful and we were devastated knowing each day that passed was another day closer to our little girl developing leukemia.”
Sophie’s bone marrow testing did find a cord blood match, but that type of transplant meant a longer engraftment period, a longer hospital stay and a much more challenging recovery period. The Lees decided they needed to proceed as soon as possible because Sophie’s white blood cell counts were dropping dramatically. After consulting with their medical team, Judy and Tony made the decision to pull Sophie out of Kindergarten about halfway through the school year and admit her to Phoenix Children’s Hospital to start the cord blood transplant process.
While Judy and Tony were grappling with the decision to move forward with Sophie’s cord blood transplant, a transplant family in the Phoenix area whose son had been through a bone marrow transplant suggested the Lees make a call to the Children’s Organ Transplant Association (COTA) to learn about fundraising for transplant-related expenses.
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. On February 10, 2016, Judy called COTA and two days later, their formal agreement to become a COTA family was received at the organization’s Bloomington, Indiana, headquarters.
Sophie was admitted to Phoenix Children’s Hospital on February 23rd. On March 17th a COTA fundraising specialist travelled to Arizona to train the volunteers for the COTA campaign in honor of Sophie L. COTA is a 501(c)3 charity so contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a patient’s lifetime. This group of family members and friends, i.e. COTA Miracle Makers, quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
“Sophie did great with chemotherapy to wipe out all her diseased cells, and the cord blood stem cell transplant went smoothly. Shortly after that, she started to lose her hair, had less energy and slowly lost her appetite. Her medical team initially administered Tacrolimus for her immunosuppressant drug but Sophie developed high levels of toxicity with changes in her mental status, which was very scary to experience. She would not talk or communicate and it took a few weeks to flush the drug completely out of her system before she started speaking again. Sophie also developed severe graft versus host disease (GVHD) of her gut and skin, which also was very scary since it took a long time to get that under control. Eventually, she started Extracorporeal Photophoresis (ECP) to help control her GVHD, which thankfully improved after a few weeks.”
After almost four months inpatient, Sophie was cleared to go home. But going home did not mean things were much easier. When Sophie was released she still was having issues with eating, nausea, vomiting, stomach pains, GI issues, skin issues and sleeping. While it was great to have Sophie home, the Lees had to manage the treatment of GVHD of her gut and skin, as well as managing her being on TPN, NG tube feeds for nutrition and a never-ending list of medications. There were home health professionals coming in and out regularly. Sophie had twice weekly clinic appointments along with monthly inpatient treatments, all of which had to be managed by Judy and Tony … and all of which added to the family’s growing total of transplant-related expenses.
Sophie’s skin condition slowly improved but, unfortunately, her GI issues continued. At a follow-up appointment it was discovered that her gall bladder was seriously inflamed and on October 22, 2016, Sophie returned to the hospital to have it removed. After that surgery, her GI issues slowly improved and Sophie was able to start eating more and was actually starting to keep the food down. Sometime early in 2017 Judy and Tony finally noticed Sophie’s GI and skin symptoms had improved dramatically, and they were hearing fewer complaints from their tough little fighter. By April she was taken off IV fluids at night and returned to drinking and eating for all of her nutrition and fluids. In addition her clinic appointments were decreased to once a week and then every other week. Lab blood draws decreased to the alternate weeks; the Lee Family finally felt like they were returning to a more normal life.
While Judy and Tony were working round the clock to care for Sophie with a goal of returning their family to a more normal routine, their team of COTA volunteers organized a very successful golf tournament and hit the $75,000 fundraising goal. Judy and Tony will be forever grateful.
Thinking back and remembering some very dark days during Sophie’s cord blood transplant and lengthy recovery, the Lees have become raving COTA fans. “We were referred to the Children’s Organ Transplant Association (COTA) by another transplant family. Just learning there was an organization that could help with fundraising for transplant-related expenses while providing guidance eased some of our initial stress. COTA’s affiliation with our local Walgreens also helped tremendously with medication coordination and delivery. The website COTA provided gave us hope by reading the messages of support from so many who cared for our little girl and for us during the difficult and long post-transplant recovery period Sophie endured.”
Once Sophie was cleared to return to her classroom, the family encountered more hurdles since she had been gone for almost a full year. The transition back to school was not smooth. Sophie began to show signs of PTSD, which was due to the difficulties she was having adjusting to a school setting. Those behaviors started exhibiting themselves at her clinic appointments as well; Sophie was in general becoming more fearful and anxious. Working with Sophie’s medical team her parents decided the best course of action was to do homebound schooling with the hopes she would return to a classroom setting once she had acquired the skills necessary to handful stressful situations.
Today Sophie is making great strides. She loves ice skating, golf and swimming as well as singing and performing. Sophie is a budding artist and is a fan of building with Legos. She is back at school full time in her second grade classroom with the help of a personal aide. Sophie loves going to school and being with her classmates and teachers, which is making her feel almost like a ‘normal’ kid again. The Lee Family is thrilled to report they have been able to travel this year, which is something they did quite a lot before her transplant and being able to do so again is so ‘freeing.’
Getting to this place, according to Judy, has been a long, overwhelming and tiring journey for all but it has been entirely worth it. Sophie’s cells are 100% donor post-transplant and for the most part she has been healthy. Sophie is also starting to look like (and feel like) she did prior to her cord blood transplant — a transplant that saved this vibrant little girl’s life.
When asked if she has a specific hope for the future Sophie replied, “I hope I get better.”
November 17th is National Adoption Day and Thanksgiving follows just a few days later. Undoubtedly COTA’s Lee family will be celebrating both. Their Thanksgiving table will be full of grateful people; their Thanksgiving blessing will likely include a chorus of thanks for Sophie’s birth parents and her cord blood donor for whom they are forever grateful.
Happy Thanksgiving, Sophie, Judy and Tony from your COTA Family!