January 2, 2019 — January is designated as National Blood Donor Month by The American Red Cross to encourage donors to give blood, which is typically in short supply during winter due to the holidays and inclement weather that makes people more prone to illness. A COTA family in Pennsylvania will be forever grateful to the blood donors whose blood was used throughout their daughter’s transplant journey and for her liver transplant that occurred two years ago on January 7th.
Regan and Richie Reeder of Monroeville, Pennsylvania, are stepping into 2019 hoping and praying this is a year of no medical emergencies, no surgeries, no complications and no setbacks for their little girl, Myka Joy, who will turn four years old on January 30th — a dream come true for this family.
The Reeders were very excited to hear they were pregnant with their second child. First-born daughter, Alivia, simply could not wait to meet her new little sibling. As Regan’s pregnancy neared its end, the family of three was in countdown mode waiting to become a family of four. Myka was born full term via cesarean section at a local hospital. Regan remembers Myka’s first few days of life as being great. The baby was eating well, sleeping well and Alivia was thrilled to be the big sister. But on day three of Myka’s life, her temperature dropped, she refused to eat, her breathing was labored and Regan knew something was very wrong. Myka Joy was transferred to Children’s Hospital of Pittsburgh of UPMC where it was discovered the newborn was in an acidotic coma and was fighting for her life. The breast milk she had eaten since her birth had literally turned into poisonous toxins in her blood. The team of specialists at the hospital surgically placed a line so dialysis could be performed on Myka’s blood. After two rounds of blood dialysis, the baby started to stabilize.
Over the next several days, Regan and Richie learned Myka had a genetic disorder, Methylmalonic Acidemia (MMA), which meant she was born without an enzyme that is needed to break down certain amino acids in protein. MMS affects 1 in 80,000 to 100,000 babies; the onset of MMA typically occurs in the first few months of life.
After almost three weeks in the NICU’s most intensive treatment area and placement of a G-tube, the Reeders were able to bring Myka home and to begin to learn how to care for her and her ongoing medical needs. Regan and Richie quickly learned the extensive nature of Myka’s medical care regimen. Their days were filled with mixing her prescription formula, waking her up to eat or tube feed at night, keeping her away from unwanted germs and administering her medications via her G-tube. The summer of 2016 was somewhat of a blur due to the intensity of Myka’s medical care and the mountains of research both Regan and Richie were doing about her disease. They both came to the conclusion that Myka Joy’s best chance at long-term survival would be a life-saving and costly liver transplant. A new liver, with the ability to break down enzymes that Myka’s little body was unable to do, would dramatically increase her health, decrease the ammonia in her blood and lessen the severity of MMA by 50-70%. A new liver would also decrease the likelihood of future brain damage, blindness, metabolic comas and other serious MMA complications. While they knew a liver transplant would not be a cure for Myka, they decided to pursue a new liver, and hopefully a new life, for Myka.
A transplant social worker at the Children’s Hospital of Pittsburgh introduced the Children’s Organ Transplant Association (COTA) to the Reeders and suggested they might want to consider fundraising for the growing transplant-related medical costs they were, and would continue to be, facing. On July 15, 2016, Regan called COTA’s 800 number to learn more and to ask many good questions about how COTA might be able to help. Ten days later, Regan and Richie returned the paperwork and officially became part of the COTA Family.
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. Another plus? COTA funds are available for a lifetime. A month later, a COTA fundraising specialist trained volunteers in the Pittsburgh area for the COTA campaign in honor of Myka Joy and walked the group of attendees through the entire COTA fundraising process.
According to Regan, “COTA made it clear that the support they offer would not be one more task for us as parents to accomplish, but that they would train a team of our volunteers to carry the weight of fundraising. From day one, COTA’s partnership has been invaluable to our family.”
“As our COTA team of volunteers began to raise funds in honor of Myka Joy, we were relieved to be able to tell others that COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and these COTA funds are available for a lifetime,” Regan said. “The staff who trained our volunteers were knowledgeable, supportive and excited to help our family in any way they were able to contribute. Our volunteers were given a fundraising website at no charge and our family used the COTA site to blog medical updates to our friends and family.”
Throughout their ‘transplant trek’ as Regan named it early on, she and Richie both maintained detailed blogs about their journey with Myka. Here are some bits and pieces of this family’s transplant journey that have been excerpted from their blogs:
August 29, 2016: The nature of this transplant surgery is that it could happen at any time. From the time the right pediatric-size liver is harvested in our region to the time of surgery is roughly six hours. It will happen quickly and we could have many false starts along the way. It could happen the first week of September, at Christmas, or anytime in between … both of our driven, planning natures are being challenged as we prepare and wait.
November 2, 2016: For several months we thought we would be pursuing a living donor option in which my husband would donate a portion of his liver to Myka. However since Richie and I are both recessive carriers of the ineffective gene this was not an option. We have instead chosen to wait on the UNOS list for a donor organ. We have had one false alarm call so far as we wait for the right match for our baby. My emotions have included sadness, frustration, excitement, fear, anxiety, disappointment and even anger. This isn’t easy or fun. In fact I dislike it … a lot, but I desire to walk into this battle holding firmly to truth – relying on the power of God instead of my emotions.
December 1, 2016: December has arrived and in the midst of all the holiday excitement we have had not one, but two, false alarms for Myka’s transplant in just the past three weeks. Unfortunately, due to Myka having a lingering runny nose, cough and congestion, we have had to decline both times. Moments of selfishness have snuck into my life frequently as of late. Like when we had to remind the couple whose wedding my husband was officiating that we could literally disappear at any moment if ‘The Call’ came … and even when I bought Myka’s Christmas gifts, not knowing if we will be home on Christmas Day at all. Sometimes I start to feel sorry for myself and for our situation and for how all of this affects our five-year-old, Alivia.
December 17, 2016: Waking up every day wondering if today will be the day of your daughter’s liver transplant is not the easiest way to live, but it has caused us to cherish every moment as a family over the past several months. We thoroughly enjoy every meal out, Christmas light drives, Sunday services … knowing each event could be our last for a while. Waiting is never easy, but we have come to take things in stride and continue to live lift to the fullest.
January 7, 2017: We are overwhelmed by the amount of prayer and support for Myka today for her LIVER TRANSPLANT. Myka was taken back about 1 p.m. and we heard word from the OR around 5 p.m. that things were going very well. We may not get to see her until midnight or so but wanted to brief everyone who is waiting to hear an update.
January 13, 2017: Myka’s a true fighter. Just about every milestone in her liver transplant journey has been delayed for her and she continues to persevere through the setbacks. The transplant lasted 11 hours instead of eight, the incision was not closed, her OR follow-up plan was pushed back, clotting was discovered yesterday, etc. Today’s plan was to coach her to breathe on her own and gradually wake her up yet she lies sedated and intubated as we await tomorrow.
January 15, 2017: We miss our daughter terribly at this point. What would we would not give to see her open her eyes, babble a few words and breathe on her own! Thanks to all of you who are supporting us along the way. Keep the encouragement and connection flowing. We need it and value each note and text.
January 18, 2017: Right now I am staring at my sweet little Myka who is sedated and intubated, yet ALIVE with a new liver functioning inside her body. It is mind blowing when I really think about it. Though she is just a few feet away from me, my heart is broken at how much I miss that toddler and her crazy antics. Almost two weeks have passed since I held her, looked into her eyes or heard her yelling, ‘Mama.’ Rest is best for her right now as her body continues to fight through complication after complication.
January 27, 2017: If Myka could talk, here is what she might say about today … “I had a good night sleeping last night and worked hard to pass my breathing test this morning. I was SO over that tube in my throat, so I started to gag a lot this morning and they eventually took it out! The doctors found a new pocket of fluid on my lungs so you can pray that it goes away soon. I’m pretty cranky right now because I’m still trying to figure out what happened over the past three weeks. All I know is that my throat really hurts, I’m hooked up to these machines, I’m sweating all the time from withdrawal of my medicines and I can’t cry or make loud sounds yet. Mommy got to hold me a little today and she definitely enjoyed it. Mommy and Daddy are telling me I got a new liver – whatever that is.”
January 29, 2017: After a restful night’s sleep, Myka said, ‘Mama’ in a scratchy voice several times and sat up for a total of 40 minutes looking at books and we were overjoyed! Tomorrow is Myka’s birthday and while she will not be able to eat anything fun or have strength to open gifts we are looking forward to celebrating the two years of life God has given her and to celebrate the best gift of all – a new liver!
Myka’s recovery continued to have serious bumps in the road, but this blog from Regan clearly expressed the family’s excitement with these words, Myka is HOME!!!! According to Regan, “It was a joy to see Myka eat some Cheerios in her high chair, watch Mickey Mouse Clubhouse in our living room, receive all of her medications in her room and sleep in HER bed here at our house tonight.” This update from Regan shared the staggering news that Myka had been inpatient for 54 days.
2017 was full of ups and downs for Myka as her transplant recovery continued. Many of Regan’s blogs throughout the year shared details about the family’s trips back and forth to the transplant center as her recovery encountered complications, illness, food aversion, medication changes, etc. But each update almost always contained words of gratitude for the family’s support network and for the role COTA played/continues to play in the family’s ongoing transplant journey.
According to Regan, “When we have had questions about transplant-related expenses that may or may not be covered, the COTA team has answered those questions specifically and in a friendly way, which is priceless for a mother of a child with special needs who spends countless hours on the phone with medical supply companies and insurance representatives. COTA has been with us every step of the way as we have navigated the stormy waters of a life-saving organ transplant. The process is never easy but knowing that COTA is invested in our family and will be there for a lifetime of transplant-related expenses has meant so much!”
Entitled Summer 2018 Myka’s Health Update, Regan’s COTA website blog started, ‘Here’s the long overdue Myka Health Update we have been telling everyone we needed to write for the past three months. Myka’s life this spring has been full of progress and minimal setbacks. In February, Myka was taken off her steroids which had caused all sorts of bloating, energy and appetite issues for almost a year post transplant. Myka still has about a dozen doses of various MMA and liver transplant-related meds she takes every day through her G-tube. Thankfully her blood counts, electrolytes and liver numbers remain stable. Based on being off steroids, having a decreased risk of infection and having a stable outlook, Myka’s doctors are on board with proceeding with her abdominal wall closure surgery, which is the final step in her liver transplant process. Myka has been eating by mouth like a champ for some time and she is still consuming her limited amount of 18g of protein a day. She enjoys waffle fries, ‘nuggies’, rice, strawberries and Doritos. Myka enjoys keeping up with Alivia playing ‘school’ or cooking in her ‘kitchen’ or coloring with her favorite color pink or swinging at her favorite ‘yellow park.’ Myka is a happy kid who ignores the meds and blood draws and rolls with the punches this MMA disease throws at her. Even though transplant is not a cure, her liver transplant has greatly improved her prognosis with her genetic disease.
“The Children’s Organ Transplant Association (COTA) has eased the financial burden of our family’s transplant journey to date, which has allowed us to focus solely on caring for Myka Joy. Not only has COTA been helpful financially, they have also been encouraging, supportive and have become vital members of our team as we have navigated Myka’s transplant journey. Even today, two years post transplant, COTA continues to support us and truly cares about Myka and our family and they will continue to do so … for a lifetime,” said Regan and Richie.
Looking back it is easy to see how far Myka has come. She was taking up to 27 doses of medicines and injections per day in the first few months following her liver transplant. That number has now been dramatically reduced. Although Myka has had many complications and setbacks after her liver transplant, she is a brave warrior who has continued to push through the many challenges. Myka is continually improving and is always on the move.
Happy 4th Birthday and Happy Transplantaversary, Myka Joy, from your COTA Family!