Our Story

Reuben is a 4-year-old boy with history of acute hepatitis failure of unclear etiology in December 2021, now recovered, who was noted to have mild but progressive pancytopenia beginning around March 2022. He has been diagnosed and transfusion dependent since the end of September and still on a long road to recovery. 

During Christmas break 2021 while most people were enjoying being around family, we were spending the holidays in the hospital trying to figure out what was wrong with our healthy 3-year-old boy. After Christmas Ru was showing signs that he wasn’t feeling good. After three days of not feeling good Ru woke up with bright yellow eyes and we rushed him to the nearest ER in Waco, TX, where we were living at the time. They couldn’t figure out what was causing his enzyme to be so high despite all the tests they ran and transferred Ru to a children’s hospital in Temple, TX, for further exams. Day 4 and still no answers to what was happening to our son. We were then life-flighted to the next hospital where we would meet with the liver specialists in Dallas, TX.

While in Dallas, TX, they ran every test possible for answers, but his enzymes were just increasing as days went by. We started a low dose of steroids hoping it would help fight whatever virus Ru had and by day 16 he tested for Coxsackievirus type B and even though it was the only thing he tested for it didn’t explain his symptoms. We believed the steroids were working since his numbers were dropping slowly.  After 20 days we were discharged from the hospital on a high dose of steroids and a lot of medication to help keep his enzymes levels down for hepatitis. After many doctors’ appointments and being on steroids for 6 months he was finally in the clear with his liver by September 2022.

We relocated to Southwest, MO, in April 2022 and started going to AR Children’s NW Hospital where we met with his hematologists. His doctor was concerned about labs and wanted to do a bone marrow biopsy, which Ru has already went under for liver biopsy so I was prepared for whatever the results were. It ended up showing what we already knew, which was his blood count was low but nothing dangerous yet. After a few more appointments and lab results, we met with his liver specialists in AR and she said Ru’s liver finally recovered but we didn’t see his hematologists that day. As we were driving home, I was just so happy to hear Ru was okay, I remember thinking no more monthly appointments. I was wrong. On the way home I got the phone call saying we needed to come back in couple of days because Ru needed blood transfusion. I remembered calling my husband and just cried as he was trying to figure out what was wrong. I explained to him what was said over the phone as he travels for work and we were both in shock with the news since we thought Ru was going to be a healthy little boy again.  

The day we went in for his blood transfusion I remembered being scared for him. He already hated getting labs done and I wasn’t sure if I was prepared to see blood go inside of him. Luckily I had my sister-in-law come with us since my husband couldn’t be there and we were both pretty nervous and had no idea what to expect. It was so amazing how one blood transfusion helped my baby boy! I remember looking at him glowing after his first infusion but I honestly had no clue what this meant for his future. After speaking with his doctor and her explaining what his future plans were I just honestly couldn’t believe it. We already had been dealing with his liver failure for over half a year and now he was being diagnosed with aplastic anemia. 

Aplastic anemia is a rare, serious blood disorder due to bone marrow failure to produce blood cells. Transfusions are used to reduce risk of bleeding, infection and relieve anemia symptoms. Since being diagnosed, Ru is having to get platelets weekly while getting blood transfusions every 2/3 weeks. Who knew one trip to the ER meant changing his life for what seems like forever. Since being diagnosed with aplastic anemia, Ru has had over 40 blood infusions, went to 3 different hospitals, failed immunosuppressive therapy with H-ATG, and now awaiting bone marrow transplant. Ru didn’t have a 10/10 match but Ru’s dad, Matthew, who’s 5/10 match will be the one saving our son’s life with his bone marrow. Reuben was admitted to the hospital May 30th to prepare him for his BMT where we finished R-ATG, and going through chemotherapy at this moment. Reuben’s transplant is June 9th — the day we are all so excited about because this means it will be one step closer to a healthy little boy again! But with his BMT journey we are having to live away from home for a few months till it’s safe for Ru to return home. We already had to say “see you later” to Ru’s best friends, his pups, but that also means being away from the comfort of his own home where he feels safety. Reuben’s stay here at the hospital isn’t so bad since he has me (mom), dad, and big brother with him to help make him feel a little better about being away from home.

So much has happened since Reuben first got sick and with all ER trips, appointments, labs, infusions, biopsy, X-rays, and so much more it’s put a burden on us. I stay at home to care for Reuben and take him to all his appointments while my husband works out of town to ensure we have everything we need and including having insurance that can cover most of the hospital bills, but with one income, two different homes and a still long journey for Ru to recovery anything helps. So, we partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Reuben is very loved by so many and we are so thankful to all our family and friends who have helped us from day one, and with God by our side I know one day this will be behind us but for now we are doing our best putting our faith into God hands. Reuben has a Facebook page where I daily post about his day and will continue to update his journey on this page as well.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.