Honored Kid

Rayanna Marrero

Rayanna Marrero Kid Photo

Location

Sergeantsville, NJ, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

July 2007

Status

Angel

Treated At

Memorial Sloan Kettering Cancer Center Childrens Hospital of Philadelphia The Children's Hospital at Saint Peter's University Hospital

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My Story

Our brown eyed beautiful baby girl, Rayanna Rose, affectionately known to family and friends as Ray Ray, entered our lives on November 25, 2003. She was a happy baby even though she was constantly plagued with one ear infection after another. She would no sooner complete one course of antibiotics and she would begin another one. In early July 2007 after enjoying a day's play on the trampoline she complained of severe leg pain. X-rays were taken and the orthopedist believed she had a hair line fracture of her leg and ordered that pretty purple cast. In less than a week the severe pain returned and she was admitted to St. Peter's Hospital. Further x-rays discounted the claim of a broken leg but that diagnosis was replaced with the one a parent never wants to hear. Rayanna had Acute Lymphoblast Leukemia (ALL). I remember the Social Worker trying to reassure me that Rayanna would be okay because ALL had an 85% cure rate. I thought that was good but what about the other 15%?! The day after the diagnosis was confirmed she began what would be a 27 month course of chemotherapy. Her treatment had its ups and downs along with her blood counts but she continued to the the strongest little trooper anyone could ever imagine. She was a singer, a dancer, an animal lover (her pets included a horse, a donkey, a rabbit, a dog and two cats). She was undaunted by the loss of those beautiful curls and learned to ride her two wheeled bike while in treatment. A routine EKG during treatment revealed a 2.5 cm. blood clot attached to the end of her port catheter and lying within the aortic heart valve and she was airlifted to Children's Hopsital of Philadelphia. Unaware of the true danger she was in she was just excited to have taken a helicopter ride! As a result of that setback it became necessary for her to endure twice daily injections of a blood thinner. A short time later her port was removed and chemo was administered intravenously. Our then four year old hero took the IV insertions in stride without tears so long as the nurse counted to three before she inserted the needle and she always had to watch as the needle was inserted. Rayanna handled every aspect of her care so long as it was explained to her prior to administering it. I still carry the vivid picture repeated so often of Rayanna's worried face being replaced with acceptance after her mother carefully and calmly explained what would be happening and why it needed to be done. Rayanna did EVERYTHING ever asked of her. Ray Ray completed the required treatment for ALL in September 2009 but by just November we were certain all was not well. Instead of her blood counts returning to some semblance of normalcy they continued to drop. A second opinion from Memorial Sloan Kettering Cancer Center brought another dreaded diagnosis. Rayanna had a secondary cancer, Myelodysplastic Syndrome (MDS). MDS was most probably a result of the chemo regimen she had been prescribed to rid her body of ALL. While this occurrence is rare it does happen. We have recently had that confirmed with the same diagnosis for Robin Roberts (Good Morning America). The only curative course of treatment for MDS is bone marrow transplant. An active search of donors revealed Rayanna's mom to be a 9 out of 10 match but the best match went to Uncle Bryan (Rayanna's maternal uncle). Since a match that close other than in a sibling, occurs less than 1% of the time we were convinced all would go well and Rayanna would someday be that veterinarian she longed to be. We were further encouraged when just a half hour after transplant Ray was out of bed decorating her walls with colorful polka dots. Surely the Good Lord was with us. For the first four months following transplant Rayanna managed to meet every benchmark that had been set and was gaining strength along with that infectious smile and her curly brown hair. Christmas day 2010 Rayanna awoke with an unwanted gift; an itchy rash that proved to be the beginnings of graft versus host disease. High doses of steroids were administered along with all the other medications. It was necessary to suppress the return of her immune system in order to fight off the GVHD and she remained confined to home and away from any potential threat of germs. Summer of 2011 brought the diagnosis of a very dangerous fungus in her lungs . . . more medications, more hospital stays when she would spike a fever, pneumonia, etc.. Rayanna was so much more than cancer diagnoses, treatments and medications. She was a bright, strong, loving and energetic little 8 year old who wanted to be a "normal" little girl going to school and church, going to her Girl Scout meetings, birthday parties, she wanted to ride horses and care for her pets. She wanted to meet Justin Bieber and she loved all things purple and sparkly. She truly cared about people. One of those fond memories of her strength was the day she needed to go to another floor of the hospital for an x-ray. Transport showed up at her room with a wheelchair and she ABSOLUTELY refused to sit in it and be pushed. She pushed that wheelchair all the way to x-ray! She was a fighter at 3 and she continued that fight for 5 long years. Just weeks before her passing she was, once again, inpatient at MSKCC and it was Girl Scout cookie sale time. She sold over 300 boxes of cookies from her hospital bed. She knew the names of all of her medications, what they did and when they were to be taken. As with most of the children with cancer, she was wise beyond her years and was sensitive to all around her. The loss of our sweet baby Ray shadows us daily. What would she have become . . . doctor, lawyer, president? What she did accomplish and what she understood about life in eight short years some people never grasp in a full lifetime. Rayanna was a true blessing to all she touched. My only prayer now is that someday through research there will be no children or their families experiencing this pain that follows the words "your child has cancer." RIP alongside our angel, Trudy Nan Small, MD

The Childhood Cancer Ripple Effect

Who's Honoring Me

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    Linda Swackhamer

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    Mary Schuetz

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    Eric Trautman

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    Eric Vanden Berghe

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    Carole Vanden Berghe

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    Scott Schuetz

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    Amelia Vanden Berghe

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    Alyssa Schuetz

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    Talia Palmer

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    Amanda Clark

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    Geordan M.

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    Jason H.

  • event

    St. Baldrick's Headshaving Event & Auction

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