Save Our Sick Kids - SOS Kids Foundation, Inc.
  • Home
  • Be Inspired
    • Patient Stories
    • Physician Stories
  • Get Help
    • Facts & FAQ
    • Types of Infections
    • Physician Outreach
  • Donate
  • About
  • News
Picture

Patient Stories

These stories are reprinted with permission from Mission From The Heart.

Genesis’ Story

Genesis, nuestra niña de 2 años y medio, fue diagnosticada con leucemia en Octubre de 2012.  Apenas dos semanas más tarde, contrajo una infección de piel y pulmones causada por un hongo muy agresivo llamado Rhizopus.  El cuadro clínico fue tan complejo que los médicos nos dieron muy pocas esperanzas de que Genesis pueda sobrevivir a la infección pulmonar.

Hoy, casi 6 meses más tarde, estamos muy felices con los resultados obtenidos.  Todo esto gracias a la labor del equipo de oncólogos e infectólogos del Hospital de Niños de Vanderbilt dirigidos y trabajando hombro a hombro con el Dr. Walsh.

​Estimado Dr. Walsh,

​Le estamos muy agradecidos por el gran trabajo que ha hecho! Usted ha sido una pieza clave en la recuperación de Genesis.  No tenemos dudas que Dios lo ha enviado, y lo ha usado como instrumento para que todos juntos con sus conocimientos pudieran salvar la vida de nuestra hija.

Queremos expresarle nuestro más sincero agradecimiento! Ha sido un placer poder conversar por Skype! Pero también esperamos algún día poder conocerlo personalmente y que usted pueda conocer a Genesis.

Hugo y Misalia Cabrera, los padres de Genesis
Picture
--
​
Genesis, our two-and-half year-old daughter, was diagnosed with leukemia in October, 2012.  Two weeks later, she developed skin and pulmonary infection with a very aggressive mold, Rhizopus.  The clinical presentation was so complicated that the physicians gave up little hope that Genesis would survive her pulmonary infection.
​
Today, almost 6 months later, we are very happy with the outcome.  All because of the team of oncologists and infectious diseases physicians at Vanderbilt Children’s Hospital, lead by and working hand in hand with Dr.  Walsh.

Dear Dr. Walsh,

We are very grateful for the extraordinary work you’ve done! You played a critical role in Genesis recovery.  We have no doubts that God send you, and made you the instrument that allowed everyone working together with your knowledge save our daughter’s life.

We would like to express our most sincere gratitude! It was a pleasure talking with your through Skype, but we hope that someday we will be able to meet you personally and introduce you to Genesis.
​
Hugo and Misalia Cabrera, Genesis’s parents
Genesis, nuestra niña de 2 años y medio, fue diagnosticada con leucemia en Octubre de 2012.  Apenas dos semanas más tarde, contrajo una infección de piel y pulmones causada por un hongo muy agresivo llamado Rhizopus.  El cuadro clínico fue tan complejo que los médicos nos dieron muy pocas esperanzas de que Genesis pueda sobrevivir a la infección pulmonar.

Hoy, casi 6 meses más tarde, estamos muy felices con los resultados obtenidos.  Todo esto gracias a la labor del equipo de oncólogos e infectólogos del Hospital de Niños de Vanderbilt dirigidos y trabajando hombro a hombro con el Dr. Walsh.

Anna’s Story

In February 2007, Anna, then five years old, was diagnosed with high-risk acute lymphocytic-leukemia (ALL). Shocked and devastated, Anna's family was given the news that Anna had an 80 percent chance of survival and a treatment plan of chemotherapy and radiation that would take two and a half years. With treatment underway, Anna suffered the side effects common from such severe therapies. Anna missed much of first grade due to the side effects of her treatment.
Picture
Then, on February 11, 2008, one year into treatment Anna was stricken by a stroke. She was rendered partially immobile, not able to move her left leg, left arm or see out of the left side of both her eyes. Shortly after being admitted to the hospital, Anna developed a high fever of 103 degrees which persisted for a heart stopping two weeks. Despite multiple tests, doctors could not determine the cause of the infection. Finally a CT scan showed that several large abscesses (puss filled sacs) had formed in her brain.
​
Lab tests came back positive for Aspergillus, a common fungus found floating around everywhere that healthy immune systems prevent from entering our bodies or doing harm. With her immune system compromised from chemotherapy, this fungus had multiplied and riddled Anna's brain with puss-filled abscesses. Anna not only had it in her lungs, but it then traveled to her brain causing the stroke. Current medical knowledge indicated that a fungal infection in someone's brain is fatal.
With the major concern being the fungus spreading, ultimately taking Anna's life, doctors recommended the complete removal of the right side of her brain. Anna's parents were sick with worry, wondering what would be left of Anna- and her sparkling personality after this. Anna's oncologist, unhappy with this drastic approach, continued to search for alternatives to the removing half of Anna's brain. He contacted Dr. Thomas Walsh, a world class immune system and infection researcher who had dealt with challenging infections similar to Anna's.

Dr. Walsh told Anna's oncologist that his research showed that Aspergillis in the brain could be successfully treated with drug therapy in conjunction with targeted surgical therapy.

With Dr. Walsh's recommendation, Anna was put on a combination of anti-fungal drugs that his research found to be more effective than any single drug. Dr. Walsh also guided Anna's medical team on proper dosing, as his research had uncovered that children quickly metabolize the drugs leading to under dosing and ultimately death from the fungus.

Anna was discharged in late March after 40 days in the hospital, still unable to walk or use her arm but happy to sleep in her own bed. From April to June Anna required several surgeries to drain the abscesses and clear blockages caused by the infection. When the last large puss sack was removed all that was found inside was dead Aspergillus. The treatment had worked.
​
On Anna's seventh birthday, three months after her debilitating stroke and more than a year after her initial cancer diagnosis, Anna took a first step on her own at her birthday party. Anna continued to improve and gain strength and mobility. In 2009 Anna ended her chemotherapy and lives happily in remission. At age ten she is a walking, talking, physical manifestation of a miracle.

Carson’s Story

Dr. Kathlyn Ignacio, Carson’s Mom

Dear Dr. Walsh,

​I am writing this letter to you to convey my deepest thanks for all you have done for me and my son these past few months.  I am so thankful that you exist!  I am so impressed with you deep devotion to your field, and your expertise in fungal infections, and the incredible help and guidance you have given me and his medical team at Rady Children’s Hospital in San Diego, California in dealing with my son’s Zygomycosis infections.
My six year old son Carson Cloyd was admitted to Rady Children’s Hospital with a diagnosis of Acute Lymphocytic Leukemia on September 16, 2006.  This was complicated by an episode of septic shock which occurred 11 days after his admission.  He was stabilized and transferred out of the unit a week later.  He had a suspected diagnosis of typhlitis, and had ongoing abdominal pain for almost a month.  Due to his neutropenic state, he did not have surgery.  Unfortunately his belly pain progressed despite multiple narcotic medications, and he was again transferred to the ICU.  A small bowel obstruction then occurred, and he was taken to the operating room where a section of his colon was noted to be necrotic and had perforated.  10 inches of his splenic flexure were removed.  A small piece of the spleen was also removed as it appeared necrotic as well.  This occurred on October 24th.  Two days later my world came crumbling down when the pathologist noted the surgical specimens contained MUCOR.
​My friend and fellow physician, Margaret O’Byrne, emailed her mentor at the Cleveland Clinic and was given your name and email address.  She emailed you and you returned her call immediately.  That night I called you and, thankfully, you’ve been central in my life and in my son’s care ever since
Picture
That evening you changed the course of my son’s care and ultimately, contributed to a dramatically better outcome in my son’s clinical course.  You spoke to the infectious disease consultant directly, who, based on your opinion, changed the dosing of Carson’s medications, as well as omitted other planned medications, potentially saving his remaining kidney.  You have been closely involved in Carson’s care ever since, calling me almost daily.  You have taken an active interest in my son’s care and well being, and you have become an integral part of the health care team.  Before one of his major surgeries, including splenectomy, nephrectomy and de-bulking of necrotic tissue, you made recommendations to the surgeon regarding areas of necessary focus and added lavage treatments that had never been done before by this institution.  On one occasion, when there was some confusion on how to proceed with Carson’s care, possibly involving more surgery, his treating physicians called a conference.  I called you immediately and you were placed on my speaker phone, calmly making recommendations that were followed to the letter, and likely saved my son from more unnecessary surgery.  Your frequent contact with his primary provider in the Heme/Onc department has provided unquantifiable assistance in what they’ve referred to as, “uncharted territory.”
I have come to deeply depend and rely on your opinion in all aspects of my son’s care.

We have now been in the hospital for 82 days.  Carson has had 3 major surgical procedures.  He possibly has one more surgery in the near future, but has done well despite a dismal prognosis.  I have you to thank for his survival.  Our long journey isn’t over, but I now have faith that my son will not only survive, but will thrive, and live a long and healthy life.

You are the angel that I prayed for in my darkest moment when I had very little hope.  I am forever grateful to you.

Very Truly Yours,
​
Kathlyn R. Ignacio, M.D., F.A.C.P
Also known as Carson’s Mom

Reed’s Story

That evening you changed the course of my son’s care and ultimately, contributed to a dramatically better outcome in my son’s clinical course.  You spoke to the infectious disease consultant directly, who, based on your opinion, changed the dosing of Carson’s medications, as well as omitted other planned medications, potentially saving his remaining kidney.  You have been closely involved in Carson’s care ever since, calling me almost daily.  You have taken an active interest in my son’s care and well being, and you have become an integral part of the health care team.  Before one of his major surgeries, including splenectomy, nephrectomy and de-bulking of necrotic tissue, you made recommendations to the surgeon regarding areas of necessary focus and added lavage treatments that had never been done before by this institution.  On one occasion, when there was some confusion on how to proceed with Carson’s care, possibly involving more surgery, his treating physicians called a conference.  I called you immediately and you were placed on my speaker phone, calmly making recommendations that were followed to the letter, and likely saved my son from more unnecessary surgery.  Your frequent contact with his primary provider in the Heme/Onc department has provided unquantifiable assistance in what they’ve referred to as, “uncharted territory.”
I have come to deeply depend and rely on your opinion in all aspects of my son’s care.

We have now been in the hospital for 82 days.  Carson has had 3 major surgical procedures.  He possibly has one more surgery in the near future, but has done well despite a dismal prognosis.  I have you to thank for his survival.  Our long journey isn’t over, but I now have faith that my son will not only survive, but will thrive, and live a long and healthy life.

You are the angel that I prayed for in my darkest moment when I had very little hope.  I am forever grateful to you.

Very Truly Yours,
​
Kathlyn R. Ignacio, M.D., F.A.C.P
Also known as Carson’s Mom

Camille’s Story

We would like to say thank you so much to Doctor Walsh for saving my daughter Camille’s eye.  Camille  developed a serious fungal infection called Fusarium.  When we found out that it was a fungal infection, my aunt who is a doctor, asked her colleagues for a recommendation. They all recommended Dr. Walsh as the best doctor to treat it.  When she called him and told him about my daughter, he was on the train going home. After speaking to my aunt, he rushed back to the hospital saying that time was not on our side.  We met him in the emergency room and could not believe how kind and caring he was. He did not leave my daughter’s side until she went up to the pediatric floor later that night.

Every day in the hospital, Dr. Walsh came to see my daughter.  Initially, Camille's eyes was sewn shut because of a surgery needed to make her cornea stronger.  After a few days, they removed the stitches and Camille became very uncomfortable.  Doctor Walsh took her hand and said, “Camille I am right here, don’t worry they won’t hurt you”.  They started drops to break up the fungus on her eye.  Every day when my daughter had a different nurse, he would come to the hospital floor to show them how to put in the drops in and make sure they were putting them in correctly.  After they discharged Camille from the hospital we had to go to the doctor’s the next day.  When we went, the ophthalmologist noticed a leak in her eye and told us she needed to have emergency surgery.  We were very upset and worried but Dr. Walsh helped explain everything to us and was there to support us. Camille had a corneal transplant the next day that was successful.
Picture
Picture
Picture

Learn

Fast Facts and FAQ
Types of Infections
Patient Stories
Physician Stories
©2012-2018 Save Our Sick Kids Foundation, Inc. All rights reserved.
  • Home
  • Be Inspired
    • Patient Stories
    • Physician Stories
  • Get Help
    • Facts & FAQ
    • Types of Infections
    • Physician Outreach
  • Donate
  • About
  • News