Sara Robinson Sara Anne Robinson

First post: Jan 27, 2009 Latest post: May 27, 2021
Our 18 year old daughter, Sara, is a cancer survivor. She was diagnosed with Acute Lymphoblastic Leukemia on January 16th, 2009 when she was 6 years old. She received a stem cell transplant on May 26, 2009. Her recovery was very lengthy with lots of bumps along the way. Thank you all for your support and prayers!!


In early Jan of 2009, we noticed Sara starting to limp..We kept her home from school,thinking she had pulled a muscle. Then she started having very high fevers. On January 15th we took her to her bone doctor where he became very alarmed after seeing a growth on her left tibia bone. He told us to go to the Children's Hospital immediately. After an MRI that night and surgery the next morning, the doctors diagnosed her with Leukemia (ALL). We were all shocked!  And it was real hard on Sara as she couldn't walk anymore and was confined to a wheel chair.  She started chemotherapy right away and completed the induction phase after 4 weeks. Sara was responding slower to the chemo than anticipated and did not go into remission. So her doctor extended the induction period by 2 more weeks where she finally went into remission. At that time, her only hope of survival was a bone marrow transplant. She continued with her chemo treatment (along with steroids) while her dr looked for a match. She received several platelet and blood transfusions. The steroids caused many complications right before she went into remission and had to be hospitalized. She developed a blood clot in her left arm where she once had a PICC line and she developed diabetes temporarily. After 5 days in the hospital she was able to go home on insulin and clot busting medicine. We decided that M.D. Anderson Cancer Hospital in Houston, TX would be the best place for her. So in March she started the next phase of treatment at MD Anderson. Ten days before her bone marrow transplant, she was admitted into the hospital to prepare for the big day. She underwent very high doses of chemo and total body irradiation to wipe out her bone marrow.. That was the most difficult time for us. to see her so sick and weak. But she continued to fight and on May 26th, 2009, she received a cord blood transplant (100% match). Engraftment started around +9 days and she was discharged from the hospital earlier than the average pediatic patient. By then her little sisters had come down from Oklahoma City to spend the summer with her and us. Maybe a week or so later, Sara developed a fever with diarrhea and was admitted back into the hospital. We had to constantly tell her that this was just a little bump in the road and that she would be fine even though she clearly was depressed. An endoscopy was done to see why she had blood in her diarrhea with lots of abdominal pain. Morphine kept her comfortable during this time. The results were that she had graft vs host disease and she had a bladder infection. The doctors advised us that it was good to see some graft vs host disease and were not worried. After lots of IV antibiotics and fluids, she was able to go back to the apartment that we had leased, 2 miles away. The graft vs host disease presented itself as a rash on her skin. Sara ended up having chronic graft vs host disease for several years. It was controlled by prescribed ointments and steroids. She was on steroids for so long that it has had an effect on her growth and bones. She came back to Oklahoma in December of 2009 where we moved out into the country. I homeschooled her and her sisters until 2014. She has pre-osteoperosis, going through premenopause, Hashimoto Thyroiditis, and other medical problems. In October 2014 her GVHD disappeared! On August 9, 2016 her dentist found a bump in her inner lip that was cancerous. The treatment was removal of mass with no chemo/radiation. She's back in school (her sisters too) and doing great! She's an honor student, gifted artist, writer, loves to play the guitar, and courageous young lady!!
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