Help unstoppable Sophia
Organized by: Denise Lopez
This is 5 yr old Sophia, who is battling FHLH, yet she has remained giving, loving, and full of life and smiles throughout her 50+ rounds of chemo, many surgeries, 10 central lines,PICC line, tons of various scopes and procedures, life-threatening illnesses, stem cell transplant, and consumed over 50 different medications. And through it all, when she grows up she wants to help people by being a Nurse Practitioner. Come and follow Sophia in her journey.
Sophia's family needs your help to finance her ongoing treatment and expenses. This 4 year battle has taken a tremendous toll financially and emotionally on her family. They say it takes a village to raise a child, and every one dollar you give will make a difference.
Sophia was born 10/25/09, healthy as can be or so we thought we were super excited to have our little girl. Sophia was such a happy baby and loved interacting with her two brothers, Nicholas and Brandon. Sophia received her first set of shots at seven weeks old. The holidays came and went and I noticed Sophia had an odd way of sleeping by arching her back. I thought she had gassed trapped in her belly. On January 3, 2010, Sophia was rushed to ER because she had fever of 104 all night. We were so worried and felt something was terribly wrong with our sweet little baby girl. The moment we got to the ER the nurse had notice Sophia's stomach was a little distended. The doctors immedialtely did blood work on Sophia, X-rays and a urine analysis. Finally, after hours in the ER the doctors told me that we would have to spend the night because her labs show some type of abnormalities. They sent us to floor P4, the oncolgy peds for admissions. Once we got upstairs the doctors wanted to reassure themselves and did more labs on Sophia to make sure that it was not a lab error. I still was in state of shock because why oncology?... I was totally confused and had a mix of emotions. The following day the Director of hemoc told me Sophia had some type of illness that she wasn't sure if it was leukemia , HLH, or viral infection and that her liver and spleen were very enlarged which was the reason she arched her back. The only way to determine what it really was that was hurting Sophia was with a spinal tap and that Sophia needed a main central line to start the chemo process. At that point I was an emotional wreck and just prayed all was clear. She was only 10 weeks old, how could such a small, innocent, sweet baby be so sick. On January 6, 2010, Sophia was diagnosed with HLH, Hemophagocytic Lymphohistiocytosis. HLH is so similar to cancer the treatment is the same, yet it is not classified as cancer. Sophia started the 2004 Protocol on January 7, 2010, to get her into a state of remission. I was in a raged of emotions: why? what is this? You name it I asked myself. In the very beginning it was so confusing because all my kids were getting tested and we had labs sent to Cincinnati Children's Hospital. I wanted to go there immediately but I was so afraid to leave knowing Sophia was fragile. We stayed at Mount Sinai Hospital the first time for almost a month and returned within a week of discharge because she had another fever. Even after that discharge we returned within another week or so for two weeks because her oxygen was low and she had a cough that sounded like the whooping cough. After months of waiting Cincinnati Children's Hospital stated it was not familial HLH but they were wrong. Sophia was recovering nicely and was in remission after 3 1/2 months of chemo the doctor decided to remove her central line so she wouldn't get an infection because she was recovering so nicely. On April 26, 2010, Sophia got admitted again because of fever, The worse case had happened, she had relapsed. She had a new line placed in and started the 2004 protocol again. Once again, they sent labs to Cincinnati. The doctor finally identified that Sophia was suffering from the genetic HLH and that Sophia needed a Bone Marrow transplant in any hope to stay alive. I was so worried about the rest of my family. The boys were safe from the direct threat of the disease. We needed to focus on saving Sophia. My boys got tested and none of were a match for Sophia. The doctor looked on the world wide registry and no one was compatible to Sophia. The doctor had also contacted a specialist in Sweden, Dr. Henter JI. Dr. Henter was the one who proved that Sophia had FHLH, a new type of HLH which had just been discovered in October 2009. We did numerous drives and introduced Sophia into the media to reach out to Hispanics to register because we are under represented in the bone marrow registry. There are only 10% of us latinos registered. We traveled to Cincinnati for a second opinion but home with her Dr. Del Toro was our place to be. Finally after months of searching we found a match of 4 out 6 of a cord blood, this was Sophia's only hope and it needed to get done ASAP. On September 13, 2010, Sophia was admitted to start her process for transplant. She was day -3 when Sophia was getting Chemo ATG-H she snapped her triple lumen Broviac and had to be rushed to OR to get another new line. On September 23, 2010, Sophia was introduced to her new cells. Sophia started engraphment on day 10+. She has endured a lot she's had fevers,sores on her mouth and esophagus, and GVHD of the skin (graph versus host disease) which is the body trying to reject her transplant. She is given all her meds via Gtube. She is currently still battling with CHRONIC GVHD of the skin. Sophia has battled with RSV, and ADENOVIRUS a few months after transplant. Sophia fought with all her might proving her own immune system was working. GVHD of the gut was also discovered in March 2012, by endoscopy. In July 2012 she had another GVHD skin out break. She is one tough fighter, a courageous, strong warrior princess. She became severely anemic also because she didn't want to eat. So she was put on an Iron supplement along with lots of other medications. Sophia once again was placed on high dosages of steroids to control the GVHD. In November 2012, the doctor once again began the tapering of prednisone by December she had another flare up of GVHD. By, this time Sophia was two years post transplant. Her doctor decided we needed an alternate plan. A second opinion would be needed to control her GVH. We went to Cincinnati children's hospital again, the doctor decided she would need another central line to start a treatment called photopheresis. In June of 2013, Sophia was admitted to have her new pheresis line placed and start treatment. She did 17 weeks of treatment straight until mid October of 2013. We spend 4 months away from our family. In mid October an opportunity to be closer to home arose. Children's Hospital of Philadelphia(CHOP) was a two hour commute from home (NY) and we would stay there a few days a week. We started pheresis treatments immediately, Sophia was their first blood prime patient. The doctors did the same treatment but different protocol. Sophia started becoming ill. In November of 2013, Sophia was admitted for a week in Mount Sinai in NY, she had adenovirus in the stool. Her GVHD was flaring up again. Prednisone was started again. We continued doing treatment at CHOP. The doctor basically told me there's was nothing he can do for Sophia. That photopheresis wasn't working for her. I was in so many mixed emotions. I kept asking myself how can this be? How come it was working in Cincinnati and not here? I felt confused. We didn't come this far to give up this battle yet. I had to remain strong in front of Sophia. On December 25, Sophia got sick once again with fever. Sophia got admitted at CHOP. This time Sophia had a line infection, a series of antibiotics were started. Her infection did not want to go away. Our last resort was to have her line pulled out on January 1, 2014. Her GVHD was still putting her at risk. In mid January Sophia was admitted again but this time in Cincinnati children's Hospital to have a new line placed in. She started photopheresis immediately. Sophia GVHD on skin looks much better but her GVH markers say different 8 months later Sophia's levels are still as higher than ever. Sophia's liver numbers have been elevated also and she has been placed back on prednisone because she is still having many flare ups on her skin. The doctors are trying to get her Chronic GVH under control. Photopheresis is a long process. Sophia has done already one full year of photo. Sophia still needs many more months or years to attempt to get rid of this disease. With Photopherisis treatment Sophia is not allowed to be exposed to the sun. A lot of her activities consist of being indoors or after sundown.
Sophia is very tiny and weighs only 11.2 kilos at 4 years old. Since, she is so small the biggest factor with Photopheresis is the blood priming. There's no place back home in New York that can treat her with blood prime. Sophia misses her brothers and father very much but through it all she loves life and is always very joyful. Sophia is full of adventures like any 5 year old. She started kindergarden in September. Sophia is my true inspiration, she is almyears post transplant and is still fighting to live. Celebrating her rebirth is something we look forward to on September 23. She was given a second chance. Soon she will turn 5 in October. We are so thankful to God in guiding her and giving Sophia the strength to continue fighting. Sophia's fight is not over yet, so please keep her in your prayers and show Unstoppable Sophia love and support . Please share this link and donate if possible.
Thank you and God bless