At times it is hard to just gather your thoughts and and express all that you have wanted to pen in a long time, only because you feel that whatever you will write will never be adequate enough to express such deep appreciation to a most wonderful, compassionate, and devoted doctor.
My son, a young vibrant man, was not feeling well during covid times, every single doctor we saw brushed us off as long haul covid, Months and months my son suffered from so many illnesses. His regular internist and other infectious disease drs did not want to see us any longer. Until we made this Phone call to Dr Walsh… and then our lives changed forever.
Dr Walsh said to us in the nicest caring way. Please have a full Ct-scan done, and then unfortunately our dear son was diagnosed with cancer that had already involved some lymph nodes.
So our road had begun, but with Dr Walsh at our side , always helping us with the grueling side effects of chemo. guiding us every single step of the way.
Every time we needed to make any decision , my son would always tell me, what is Dr Walsh’s opinion .
Dr. Walsh – You have changed our life and the lives of so many others, May God bless you !!
We will forever be thankful and we are hopeful to share only good moments from now on!!
Thank you for giving us the opportunity to share our utmost appreciation with everyone who had had the honor of getting to know you!
Mrs. Perlstein
My daughter has always spoken highly about Dr. Walsh who helps her treat children with cancer and infections. Little did I know, that I would one day come to seek his advice as well.
I was diagnosed with an unusual form of colon cancer and my oncology team gave me 2 possible treatment options. As a non-medical person, it was hard to know what the best treatment approach would be. As my daughter has worked closely with Dr. Walsh, I know she sought his advice on my chemotherapy treatment. Knowing that I would face a grueling chemotherapy course as well as radiation treatment, Dr. Walsh suggested changing the formulation of my white blood cell booster to make sure that my white blood cell count would be adequately maintained but also optimized in function to support wound healing.
Unfortunately, my tumor did not completely respond to radiation and chemotherapy. Initially, I was very much against further surgical intervention. My daughter encouraged me to speak with Dr. Walsh to discuss possible surgical treatment. Dr. Walsh took time out of his busy schedule and met with me and my daughter via Zoom (despite a 3-hour time difference) to review my imaging and discuss my treatment options in a way that I could understand. Ultimately, I decided to proceed with surgery and am happy to report that I have made a full recovery.
My family and I are truly grateful that Dr. Walsh is so kind in giving of his time and expertise to us even though we are not his actual patients. He really is a tremendous resource for us all.
On behalf of my family, I want to thank Dr. Walsh for the compassionate and expert care of our child, Jin, in his battle against invasive mucormycosis. We were about to return to Japan when Jin was diagnosed with acute lymphoblastic leukemia. He began his leukemia treatment at Miller Children’s and Women’s Hospital in Long Beach, California. During his chemotherapy treatment, Jin developed a severe form of mucormycosis, involving his lungs and invading his sinuses, his eyes, and his brain. The doctors referred to this as sino-orbital-cerebral and pulmonary mucormycosis, which carries a terrible prognosis. Jin was originally transferred to another institution for specialized surgical treatment, but due to the extremely poor prognosis, they decided against disfiguring surgery and recommended palliative care. Not wanting to give up on Jin, we requested transfer back to Miller Children’s.
Fortunately, Dr. Tempe Chen, who served as his primary pediatric infectious disease physician, contacted you in order to bring the best of your expertise in the treatment of this terrible infection to help our beloved little boy. Realizing that Jin’s organism was very resistant, you and Dr. Chen recommended intensive hyperbaric oxygen treatments and granulocyte-macrophage colony stimulating factor (GM-CSF) in addition to his antifungal therapy. His chemotherapy regimen also was modified to allow Jin’s own immune response to fight the infection. You were also extremely dedicated and so very kind in helping Dr. Chen and the other members of Jin’s team throughout the many months of his treatment.
We thank you for being instrumental in advocating for continuation of Jin’s treatment regimen of antifungal therapy, GM-CSF, hyperbaric oxygen, and frequent surgeries that saved him from permanent disfigurement or fatal outcome.
Thanks to your expertise and the excellent care by Dr. Chen the Miler Children’s Hospital team, our little boy Jin was able to have reconstructive surgery with no evidence of mucormycosis in his tissues and his vision has been saved. Although he has a long road to go, we are hopeful and praying that he will receive a life of full remission of his leukemia and complete eradication of his mucormycosis.
Jin is now able to see, is playing his games, and is enjoying the beautiful sunshine of Southern California, thanks to the wonderful care of the Miller Children’s Hospital team and the amazing expertise and tremendous compassion of Dr. Walsh.
Dr. Walsh has saved me from spending the rest of my life in a wheelchair or much worse. When everyone said it was no rush, take some anti inflammatories, it will be 2-4 weeks until a MRI can be scheduled, etc., Dr. Walsh said it was an emergency-that I had a tumor inside or pressing on my spinal cord. He personally arranged for expedited help and oversaw the process from 500 miles away in addition to all he regularly does. Well he was right when no one else was. The tumor was the size of a large grape and had crushed my cord by 50 percent.
The amazing part is he followed up daily for weeks after the surgery and really cared as though I were his own. I am almost fully recovered from barely being able to walk and having a dead leg.
I know he will help me again, as I have leukemia. He has already visited me in Richmond, VA and given me hope.
Thank you Dr. Walsh. Sainthood awaits you.
As I sit here trying to type the perfect letter I can not seem to find enough words to describe the wonderful care and expertise Doctor Walsh has provided for me and my family. Sometimes when someone has done so much for you and your loved ones, it is impossible to put into words just how special that person is. Doctor Walsh is one of a kind. This is my story. My husband was diagnosed with staph aureus bacteremia/ MRSA, of the blood and lungs. His lungs were so badly effected he developed a bacterial pneumonia, otherwise known as a MRSA pneumonia. The first week he was in the hospital the medical team could not assure me that he was going to be “okay.” Not knowing if my husband would be okay was the worst kind of anxiety I could bare. We have a young daughter and just the thought of him not being around to see her grow up, truly frightened me. It was the night that I had one of my many breakdowns that a miracle happened. A man standing outside of my husbands room, geared up with his mask, gloves, and drape, walks slowly into the room, he so politely introduced himself as Doctor Walsh. My husband and I were excited to meet him and had so many questions that had not been able to be answered. Doctor Walsh not only answered all of our questions but gave us such a reassurance that the battle my husband was facing, was a battle that he personally was apart of. He made us feel that we were not alone and that he was with us every step of the way. He then visited us every night to make sure we were doing okay and to check on my husbands progress. Because of his constant care, concern and treatment, my husband WILL be okay. The question of his future health status that was so frequently answered with a “maybe”, has now been stated with a “yes, he will be okay.” I have to thank Doctor Walsh for this possibility and this miracle. There has never been a doctor that I or my family has encountered that is as knowledgeable and as compassionate as Doctor Walsh. Each visit we have had with him, he has evaluated my husband as thoroughly as possible. He has taken the time as a true health care professional to assure us that there is a light at the end of the dark tunnel. If there is a need for any medical requirement, I recommend solely the care of Doctor Thomas Walsh. Thank you for taking the time to read my story. Doctor Walsh, you are a walking angel.
Our youngest daughter, Sofia, was diagnosed with ALL (Leukemia) on Jan. 2, 2014. She was 14 years old and had just finished her first semester of high school. Her first rounds of chemotherapy caused massive tumor lysis (leukemia cells were killed and spilled their contents into her bloodstream) which caused kidney failure and extremely high blood pressure, which led to 2 brain seizures. After she had been in the hospital for a month, the oncologist noticed a shadow in Sofia’s right lung. She had had frequent chest x-rays; the doctors knew what could happen in her weakened state; a subsequent biopsy, on Feb. 4, 2014, identified a scedosporium apiospermum infection. The pediatric infectious disease doctor contacted Dr. Walsh, since this fungus is resistant to traditional antifungals. Our ID doctor and Dr. Walsh decided on voriconazole (vfend) with micafungin and a 3 times a week sagramostim injection. These antifungals were in addition to all the chemo drugs Sofia was taking. The fungus spread to Sofia’s left lung and then to her liver; Dr. Walsh was again consulted and Sofia was admitted to the hospital for a few days to establish the vfend trough level and adjust the dose to make it at a therapeutic (disease-fighting) level.
The fungus slowly left Sofia’s liver and left lung. She developed a sensitivity/allergy to the vfend, causing “Fluorosis secondary to voriconazole” and periostitis. Another call to Dr. Walsh and the medication was changed to Posaconazole. Sofia chemotherapy ended in April of 2016; this helped a little since scedosporium needs a strong immune system and strong antifungals to be erradicated. Unfortunately, it also develops drug resistance; after being reduced to a single fungal lesion in Sofia’s right lung, a pre-surgery broncoscopy in Dec. 2017 showed that the fungus was growing again in her left lung. Again our I.D. doctor called Dr. Walsh for his opinion: he suggested a newer drug, approved in 2015, called Cresemba (isavuconazonium sulfate). Our insurance balked at accepting it, but our I.D. doctor wrote an “exception to the list” letter; it was covered. The loading doses of Cresemba made Sofia very ill, but we were running out of options to kill the fungus. She had graduated high and had started college by this time. We kept up home care of Cresemba, daily infusions of micafungin, and 3X a week injections. Sofia’s portacath had infected in Oct. 2016 and she now had a Hickman catheter (Broviac). I changed the tegaderm and bio-patch weekly with supplies from a home-hospital company. With the Cresemba, the fungus was cleared out of Sofia’s left lung, but persisted in her right lung. Dr. Walsh came to give some seminars in Long Beach, California in Oct. of 2018. Our I.D. doctor spoke about our proximity to the hospital; he was excited to meet Sofia after working on her case for 4 ½ years. We had an hour to speak with Dr. Walsh; I was impressed by his humility and genuine goodness and care for my daughter. He spoke ‘doctor-speech’ with our I.D. doctor, but by this point I understood most of it and could ask clarifying questions. They decided that the fungus was only being held at bay and was not being killed and that they needed to raise the doses of the 3 medications.
Sofia had a difficult time with the increased Cresemba doses; it gave her foggy brain and made thinking difficult. She dropped one of her college classes and cut back hours at her part-time job. She pushed through and asked for help with her classes to finish the semester successfully. On April 26, 2019, Sofia had a CT scan that showed no change from her last CT scan from 5 months before. The pulmonologist suggested surgery to remove the one remaining and unchanging fungal node; I think this hold-out was the original node, like a ‘mother-node’. I.D. consulted with Dr. Walsh and they both decided that medication had done all it could do and that it was time to remove the fungus before it could grow more resistant to the Cresemba. Sofia had a successful “robot assisted, video assisted segmentectomy” on June 7, 2019 and is now fungus free. She is off all medication and had her Broviac removed 3 weeks ago. Sofia will have another follow-up CT scan in 4-6 months.
We are eternally grateful for Dr. Walsh’s continued interest in our daughter, especially since he was not our assigned doctor and received no compensation for his consultations with our I.D. doctor and in-person visit. We are touched by his genuine concern for our daughter’s well-being.
After reading patient’s stories on The Mission of the Heart site, I am truly humbled. I had said to Dr. Walsh at one point, that I must be the least sick of his patients and I know now I was right. I do, however, have several health conditions, including an Immunodeficiency. I suffered for years from oral thrush, sometimes so severe I could barely swallow. So I wasn’t overly surprised when, at the end of 2018, I was diagnosed with Candida on and around my larynx.
As I am unfortunately highly allergic to Flucanazole, or any medications similar to that, I was told I had 2 options for treatment. One was weekly infusions of an anti-fungal medication, which would involve a PICC line placed in my arm for access. The second option was to take part in a clinical study which would involve medications by mouth. Needless to say I didn’t hesitate to pick the second option.
I had no idea at the time, who Dr. Walsh was, except that he specialized in infectious diseases. The first meeting with him was like meeting a saint in a lab coat. He was so compassionate, had such a gentle manner and took the time to fully explain what the study entailed and what I should expect as far as outcomes. He even walked my husband and I out to the hospital entrance and assured us that he highly respected his patients and that his work came from his heart, and he would always be available for any questions or concerns we may have along the way. I was teary after we departed because I had never felt so cared for by any other physician. He truly made me feel like my case was of utmost importance to him and I was so touched. I felt confident that no matter, he would “fix me”. And fix me he did! My larynx was clear of disease at the end of treatment.
Over the three months of treatment and seeing Dr. Walsh regularly for checkups and updates, I got to know him a bit better and he me. First he astounded me with his vast knowledge of medicine – there was not one question he could not answer fully and give a full explanation. He would also speak of some of the work and research he was involved in and I was completely blown away.
We also often had “chats” during our time together, when I got to know him a bit more and he me. I got to know his reverence for his beautiful family and how proud he is of his two daughters. His love for them was so palpable, a few times I was brought to tears.
Dr Walsh was also truly with me every step of the way. When I initially had some adverse side effects, Dr. Walsh checked on me regularly to make sure I was doing okay. I was so taken aback and so grateful, when at times I knew he was on the way to the airport, across the country or across the Ocean for major Conferences and presentations, or even with his family, and yet he would still take the time to call or text to check in. He even took the time to text me wishes for a Happy Easter and a Happy Mothers Day! (What other physician does that?!)
As the study and my treatment drew to a close, I fully realized the difference in my quality of life. Although I still have several health issues, there was a definite change in the way I carried myself, in my voice and in my overall sense of well being that those close to me took notice of. I was also overcome with emotion at the thought of not seeing Dr. Walsh on a regular basis. However, I was comforted by his offer to be there for me in a time of need. He also assured me he would keep abreast of my care at the hospital. I was so touched by that generosity of spirit and by his willingness to continue to have a vested interest in my care.
Dr. Walsh,
You are not only an exceptional practitioner and researcher, but also a truly remarkable human being. I am so honored to have been under your care and to have experienced an angel on earth. I want to thank you from the very core of my being for your care and “until we meet again may God hold you in the hollow of His hand”.
The world is a better place because of people like Dr. Walsh! He used the quote “Not all of us can do great things. But we can do small things with great love” by Mother Teresa. We think Dr. Walsh does great things with great love! With his dedication, quick thinking, and great love he changed the course of our family’s fate.
Two weeks after our daughter Kate’s diagnosis of ALL we noticed a dark mark/bruise on her nose. We were admitted to the hospital and diagnosed with mucormycosis (a very aggressive and deadly fungus) and were immediately scheduled to remove her right nostril. The next morning, after a MRI they took more upper jaw and 3 adult teeth and sedated her in the PICU for daily checks for further fungus growth. After 2 weeks of small removals, we had our third OR visit to remove bone, teeth, and a 2mm margin on the entire surgery site, chasing the mucor. She was weak with a high fever, typhlitis and critically low ANC, this time we really were not sure she would make it, but she fought. The next day, my sister was able to get in contact with Dr. Walsh thru the Henry Schueler 41 & 9 Foundation – as his specialty was ALL and mucor, whose treatments contradict one another. His immediate warmth, commitment and knowledge was a miracle! He reviewed her case immediately, talked with her team of doctors and adjusted and tweaked medications. It was clear that Children’s LA respected him and valued his option and expertise. His compassion far outreached expectation…he even would reach out to us for a bedside perspective and to ask us to give a hug to Kate for him (he in NY us in CA). Within days her downward spiral curbed…and now a month later (with his knowing ray of light shined on us) Kate has returned home! HOME! We are elated! We know in our hearts that he saved her life and for that we are forever grateful. He is not only a fantastic doctor but an amazing human. We are so blessed to know him.
Thank you forever Dr. Walsh!!!
Dear Dr. Walsh,
I am so incredibly grateful for the stroke of luck that allowed you to help with my case; there are really no words to do justice to that depth of gratitude but I am going to try anyway.
As a longtime poorly controlled asthmatic, with worsening symptoms over the past few years, it felt like another huge setback to discover I also had allergic bronchopulmonary aspergillosis. To make matters worse, the standard for treatment was steroids for 3-6 months then waiting out a honeymoon period for the next exacerbation to arrive and then to be treated again with more steroids. Having been on steroids many times in my life, I was not looking forward to this plan for treatment. The side effects of steroids were not enjoyable, to say the least. I reached out to an incredible friend and doctor at the time who happened to discuss cases with you and she agreed to take on my case with your assistance. As if you were not busy enough, taking diligent care of very sick children across the country, you kindly agreed to help with my case. Spending evenings going over CT scan results, labs and clinical history you were able to assist with a treatment plan that involved a rather new antifungal treatment that did not include long-term steroid use. Within a week of treatment, I noticed a difference in how I felt. I could breathe again. I could exercise. Within two weeks, I felt better than I had in years.
I cannot thank you enough for this gift, which is what you have given to me and to all your patients. Your genuine kindness and dedication to your patients is palpable to anyone who has the incredible opportunity to cross your path. Thank you for all that you do and for being the extraordinary doctor you are.
Aimee’s Story
My daughter, Aimee Falcon, had her first major infection in 2007 after a shoulder repair that destroyed the use of one arm. She has had no less than 70 surgeries since that time, and multiple serious infections, including a c-spine infection that almost paralyzed her. She most recently has been an inpatient for the past year and a half, including from May-August, September-present. During this time, she has had multiple severe, life threatening infections, lung surgery due to infection, breast surgery due to infection, and currently has pulmonary candidiasis and a mycobacteria blood infection. She also has an unyet diagnosed, severe primary immunodeficiency. And without the genius of her infectious disease doctor, Dr. Thomas Walsh, she may not have survived it all so far. When other physicians covering her case could not help her or really figure out what’s wrong with her, or not seeming to be interested in really finding answers, Dr. Walsh pressed on, not giving up until an answer is found, and subsequent treatment is started. She has had many times where a subtle new symptom arises, or there is a subtle change in a current symptom, which is overlooked by most of her treatment providers due to its innocuous beginning. That is when Dr. Walsh steps in with very detailed specific questions and analysis of the change. No subtlety escapes his analysis. This man’s mind is a detailed scientific library arranged in a human head. There is no detail too small, no observation unimportant. He WILL find out what is wrong with you, and he WILL move the earth to successfully treat you. But along with his scientific genius, this man is one of the kindest, most empathetic people we’ve ever met. When he tells you something will be accomplished, it will be done. When he speaks with a patient or family, he LISTENS. He has the ability to gather all the information, then look at all angles of the problem or disease, not just the known or easy path. If it weren’t for his level of knowledge and global thinking, my daughter could very seriously be dead by now. He has been her constant in a constantly rotating medical team. My entire family is grateful for having this man on her case. We have spread his name far and wide in our network, so that family and friends all know Dr. Walsh’s name, and we have shared information about the Foundation as well. He works with other physicians across the world to help people live and be well. My family and I are thankful every day that he was called in on my daughter’s case. He has made every difference in her treatment and gives her hope knowing she has someone that is TRULY working on getting her well, and being there for her any time of day. This man is a brilliant angel on earth, if you ask any of us. We stand in awe. We say it to you all the time, but thank you so much Dr. Walsh – for your genius and knowledge, your kindness and empathy, your passion to make people well. In the war against microscopic terrorists, you are the General.
LouAnn, Allan, Sean and Aimee Falcon
Camille’s Story
To Mission from the Heart,
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 eye 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.
I have never encountered a doctor before as nice, friendly, polite, caring, and supportive as Dr. Walsh. Throughout Camille’s ordeal we felt as if Dr. Walsh was like a member of our family.
Camille and I want to say to Dr. Walsh from the bottom of our hearts, thank you so much for taking care of Camille. We could not have asked for a better doctor.
Love always,
Rochelle and Camille Untener
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
—
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
Eli’s Story
I am writing to convey my deepest thanks and gratitude for Dr. Walsh and his tireless devotion to treating the most frightening disease that I never even knew existed, until it struck my son. My son Eli, age 6, had been looking forward to reconstructive ear surgery on his right ear. Eli was born with a condition called grade 3 microtia, meaning that his right ear was very underdeveloped. I had spent the entire 6 years of his life researching the best option for him, whether it be surgery or a prosthetic ear. After trying the prosthetic, Eli decided it was not for him, and we moved forward planning his reconstructive surgery. After diligent planning and research, we chose one of the top ear reconstructive doctors in the US for him. We traveled a great distance from our home, so happy to meet the surgeon who would give him the big ear he so desired. The surgery went well and we were so excited for him to finally have two matching ears. But then disaster struck, and we had no idea how disastrous at first. Eli started with a fungal appearing rash around his new ear just six days after his surgery. He had extreme itching that antihistamines could not control. Within the week, we would learn a word we soon came to despise: Rhizopus. Somehow Eli had contracted this terrible fungal organism in his recent surgical site. Once the organism was identified, Eli was admitted to a top medical center, and was started on powerful antifungal medications. It was right away that we knew his new ear was in jeopardy.
Within 24 hours, I met an amazing group of concerned doctors, and learned the name of another doctor I would get to know from afar. Dr. Thomas Walsh would be leading my son’s medical care, although he was in New York and we were in California. I was told he was the top fungal expert in the country, perhaps in the world, and that he had a very strong interest in helping to heal my son. Through his guidance our surgeon tirelessly operated on Eli, for a total of 6 more surgeries in 6 weeks. Just when we would think we were ahead of the fungus, we would see that it was winning. It was the most devastating feeling, first to be afraid that your son had gone through a surgery to have a new ear and would not be able to keep it, and then to ultimately be made aware that it wasn’t just an ear we were trying to save, but Eli himself. Once Eli’s new ear was removed, and a special lab test designed by Dr. Walsh was used to clear the margins of his wound for any possible organism, we were able to allow ourselves to have hope again. It was still a long road, and continues to be challenging, but we have hope and faith that our son is cured of this terrible, potentially life threatening organism.
I honestly do not have words expressive enough to make people understand the appreciation we have for Dr. Walsh. He is doing God’s work, there is absolutely no doubt in my mind. He is reachable at any hour of the day, ready to answer questions of our team of doctors, or to answer mine and ease my fears. He has done all of this without ever asking me for my insurance information, or charging me a dime. He genuinely cares for my son, which was apparent from the first time I spoke to him. I hope that not one other single person needs his assistance, but unfortunately there will be those people, and I hope that they are put in touch with Dr. Walsh in a timely manner as we were. My son may have only one ear again, which is difficult for him to understand, but we will consider reconstruction again months or years from now. Most importantly, we have our son, and he is healthy and we are back home again. We are forever grateful to Dr. Walsh for this gift, and for the gift of hope for the future. May God continue to bless him and his staff. We have certainly been blessed to have been helped by him.
Sincerely,
Susan Martin
Graham McGurgan
Read Graham’s incredible story here.
Daniel’s Mom
I want to take the opportunity to fully thank Dr, Walsh for taking his time to help my son Daniel. Daniel was first diagnosed with a brain tumor on his fourth birthday. After he had brain surgery to take the tumor out, he developed a rare and deadly fungal infection called Candida meningoencephalitis. Daniel’s infectious disease doctors told me that they were talking to an expert in New York on fungal infections just like the type Daniel had.
At first, I felt very happy to know that Dr. Walsh was helping my son’s doctors at the hospital and following my son’s case. I felt even happier when I actually had the opportunity to meet him in person a few months later. During his visit to our hospital, Dr. Walsh came up to my son’s room in the PICU to meet us in person. I was able to ask him a lot of questions I had and Dr. Walsh nicely and patiently answered all of my questions in detail. Dr. Walsh also spoke to my son and told him that he would do everything that he possibly could to help him get through this and to continue to be a strong boy. Dr. Walsh also took a picture with Daniel, which I am including here. Dr. Walsh is seriously the nicest doctor I have ever met!
I really felt like Dr. Walsh was an Angel sent from God to help my boy. I cannot explain all of the emotions that I have felt during this journey with Daniel. My son was very sick, but now the infection is under control and he is slowly recovering. Thanks to God, Dr. Walsh, and all the other doctors, my son is now at home with me and my family after being in the hospital for nine months and thirteen days. I am very grateful for Dr. Walsh’s help in taking care of my son.
Thank you so much Dr. Walsh for being such a dedicated doctor! God Bless you always so that you can keep helping other children like my son Daniel.
From: Daniel’s mother
Bianca M.
Long Beach, CA
Carli’s Parents
Dr. Walsh,
I am writing to express my eternal gratitude and appreciation for you intervention on behalf of my daughter Carli.
When Carli received her diagnosis in July of 2008 of Acute Lymphoblastic Leukemia, I was concerned but not really afraid. But a few weeks later, after a night of desperate emergency surgery, when the doctors later came back to my wife and I to give us the news of the Mucormycosis, then I became scared. It was not the diagnosis that scared me. I didn’t understand it well enough to be afraid. It was the fear and hopeless in the doctors faces that scared me. They had only experienced the devastating power of this disease once before and had watched helplessly as it ate its way through that poor patient.
And here was Carli, just starting on her chemotherapy when this monster invades her system.
The doctor’s advice was to make Carli as comfortable as possible. Convinced that her death was inevitable, they considered treatment and surgery to be unnecessary even cruel.
But this sixteen year old girl was our baby and passively surrendering to death was not an option.
I cannot adequately put into words the emotions we went through as doctors would explain what treatments they were going to try and yet then be told in the next breath why it would not work. Or how it is to insist on surgery when being told Carli would likely die right after being told that without the surgery she will surely die. Or how despite every decision you make is made in desperate love, yet you wonder every night if you are selfishly and needlessly prolonging your child’s suffering and pain.
When my sister found out about you and how you assisted a family in California who had gone through a similar experience and lived to tell about it, I really didn’t have high expectations. I had no idea at the time the incredible advocate who was about to come into our lives. My wife and I would soon realize we had found a personal hero for our daughter.
For this letter, my wife wanted me to write of your recommendations and direction you have given her care team that has no doubt saved her life. To write of your involvement with St. Joseph’s hospital, always available for our conferences with the many doctors involved in her care. How you came down from Maryland to visit her at Tampa General Hospital, and of your assistance to the medical staff and of your continuous advocacy in search of options above what they are able to provide here. How with every question or fear we had, you were just a phone call away. And you actually answered.
All of this is true and we would have been lost without your expertise. But as I told Edith, to me this was not you’re your greatest contribution. Your greatest gift was how you renewed our hope. Finally we were not alone. Here was this renowned doctor, encouraging not just us, but our medical team not to give up. And that has made all the difference. Your involvement helped them to look beyond their limited experience with this disease. I think your involvement encouraged our medical teem to look deeper into themselves to give our daughter not just sufficient care, but their best care, and to not write her off without a fight.
You didn’t even know us. You have not made a dime for the medical expertise you have provided on my daughters behalf. And you have asked nothing of us. Yet you have advocated for Carli like you were one our dearest friends.
Dr. Walsh, I will never be able to thank you enough.
From the depths of our heart,
Kevin and Edith Slack
Carli Slack’s parents
A Patient’s Older Brother
While my family has not had direct contact with Dr. Walsh, his support has been critical to our well being over the last three months. My brother battled a brain tumor this summer, which left his immune system open to infection by a very deadly fungus called aspergillus. Through the vigilant watch of a fantastic team of doctors guided by Dr. Walsh’s expertise, my brother’s condition has greatly improved. Dr. Walsh has made himself perpetually accessible to us through our local team. He has been available at all hours, even from overseas during his recent trip to Greece. It is my family’s understanding that Dr. Walsh’s research has been crucial to current medical knowledge of aspergillus and that his treatment methods have been highly effective in returning his patients to health. We are extremely grateful for his studies and his concern, without which we would be stabbing in the dark trying to treat my brother’s condition. It it our desire that Dr. Walsh’s research will be able to continue to provide hope to those who may otherwise have very little.
With utmost sincerity,
Joshua
Thuong’s Story
Dear Dr. Walsh,
My mother always taught me the importance of helping others in need and how that help will come back to us through karma. I never realized how advantageous good karma could be and the extent at which it would affect me until I met you. In our eyes, you went above and beyond to give us prodigious support and for that we’re so grateful!
My mother, Thuong Phamdao, at such a young age was diagnosed with Myelodysplastic Syndrome about 2 years ago. To say we were devastated upon hearing the news was an understatement. We asked for third and fourth opinions before seeking treatment at National Institute of Health.
At NIH, my mother’s primary team felt optimistic about a bone marrow transplant since she had many factors in her favor. Some of these factors included her only sibling being a very close match, her young age, stage of her disease, etc. As a family, we had long discussions regarding all the possible side effects of the transplant procedure including complications and even possible death! Yikes! I still have nightmares about it, but we reluctantly signed the consent forms.
Despite all those factors in her favor and what seemed like a successful transplant, my mother caught a very serious fungal infection from Zygomycetes. Fortunately we met Dr. Walsh and his team who closely monitored her condition and was able to contain the infection through Amphotericin, Vancomycin, debridement of the infected area, etc. Further complications arose and my mother went into septic shock and had to be intubated. It was difficult enough to cope with her condition, but it made the experience even harder as we were not able to effectively communicate with her. Thankfully Dr. Walsh’s compassion, diligence, daily updates, etc. eased our minds throughout this ordeal. I was amazed that he patiently endured our constant and tedious questions! If that wasn’t enough, he still happily came back the next day!
It was finally determined that her complications were most likely due to drug toxicity. Thus some drugs were discontinued and she eventually regained kidney, liver, and heart function. With time her condition stabilized and was extubated. However, she wasn’t out of the woods yet as she continued to bounce in and out of ICU due to respiratory distress. Fortunately, Dr. Walsh and my mother’s primary team found a treatment regimen that worked for her! Her condition stabilized and soon enough she was home!
Dr. Walsh, we feel so blessed to have met you! Although we had to go through this nightmare of an experience, you helped me and my entire family with your professionalism, kindhearted nature, thoughtful, and caring attitude. We’ve always expected a certain level of compassion from our doctors, but you have far exceeded our expectations. From the bottom of our hearts, THANK YOU for getting my mom safely back to us.
Sincerely,
The Pham Family
Andrew’s Story
My son, Andrew, was a seemingly healthy 14 year old boy who played four soccer games on Saturday, January 27, 2007. Within 48 hours later, he would be in cardiac arrest.
On January 29, 2007, Andrew was diagnosed with Leukemia (AML) and he went into septic shock. The doctors told us that Andrew would not live through the night. Andrew did live through the night, 166 more nights. There were no signs of blast in his marrow or blood after just one round of chemotherapy. It was somewhat miraculous. But, as anyone who has experience with chemotherapy and immune-compromised patients knows, the battle is often against infection.
Unfortunately, Andrew contracted a nasty fungal infection called fusarium. Andrew’s primary Infectious Disease (ID) doctor at A.I. duPont Hospital in Wilmington, DE reached out to the foremost expert that she knew – Dr. Thomas Walsh at NIH. We were truly blessed to have Dr. Walsh’s daily, literally daily, involvement in Andrew’s care. On numerous occasions, Dr. Walsh was on the phone with the entire, multi-disciplinary team that was caring for Andrew. Andrew’s ‘case’ was very complex. Dr. Walsh brought not only world-class knowledge to bear, but tireless dedication and tremendous compassion. I have NEVER met a medical professional who is as dedicated as Dr. Thomas Walsh.
I wish that this letter was being written by my son, Andrew, but that is not possible. At 1:55pm on July 14, 2007, my son went to Heaven. Our lives have an indescribable void in them. But, I don’t second-guess the ID care that Andrew received from his primary ID doctor and Dr. Walsh. I pray that God and Andrew will give Dr. Walsh the strength to continue on this crusade and I ask for blessings on his family as they support this time-consuming mission.
Sincerely,
Joe McDonough
President
Mike’s Story
Mike was 6 months old when he was diagnosed with a brain tumor. He had surgery where the tumor was removed and then started his protocol which consisted of 6 cycles of chemotherapy followed by a stem cell transplant. Due to his young age he experienced a wide range of side effects. Following the third round of chemo he had high fevers, after testing his blood a fungal infection was revealed. It was treated with antifungals and the next round was started. Right before the last round of treatment a MRI of his brain revealed something which the doctors thought was a tumor. After taking a spinal tap, the results came back that this is the same fungal infection that he had in his bloodstream after the third round and had traveled up his CSF and manifested itself in his brain. This infection named candida tropicalis is very tough and difficult to treat. Luckily, Mike’s oncologist Dr. Sharon Gardner from NYU Medical Center located in New York City had heard of Dr. Walsh and his expertise in dealing with complex infections as such. After consulting with him and starting the antifungal regimen that Dr. Walsh prescribed the infection was successfully treated. Thank God.
What amazed us all was the devotion and unbelievable care Dr. Walsh exhibited. Here is a prestigious doctor who has such expertise and is sought by all, however still treating his patients with such understanding, sensitivity, and humility. He makes himself available at all hours of the day answering endless questions and explaining everything in detail until everything is crystal clear! After this infection was treated the last cycle of treatment was given. And then Mike underwent stem cell transplant (his own stem cells). After a seven week stay in the hospital, he was discharged. Mike was now 14 months old. Due to the intense antifungal therapy that he underwent his doctor ordered a liver ultrasound to make sure the liver was functioning properly. While taking the scan the tech noticed a lesion in his spleen. After biopsing it, it came back as Mycobacterium Avium, a rare type of bacteria. It was treated for 13 months with 3 different antibiotics and the lesion was shrinking. After repeating the scan, a few lesions in the liver were detected. This perplexed everyone and Dr. Walsh was consulted. He suggested a battery of tests and at the end, it showed that these lesions consisted of iron deposits due to a large amount of blood transfusions he’d had in the past.
Fast forward 3 years – Now Mike is a healthy, adorable, delicious 4 ½ year old boy who loves fun and enjoys life to its fullest. We thank God for sending us his right messenger Dr. Walsh at the right time to help us through our trying times.
Dr. Walsh you are a
Rare individual
Who is always willing to help
And
Lend a listening ear. You
So selflessly gave of yourself and
Had a hand in healing our precious child.
My Daughter’s Story
Mr. Iman Hamad
Dear Mr. Nikolich:
I am emailing you to describe my gratitude to Dr. Walsh for his humane works that seems not to stop with us at all, but he still extends his unconditional love and care for whoever approaches him for help. This letter is intended to join thousands of voices in gratitude of Dr. Thomas J. Walsh’s humane work and professionalism.
I knew Dr. Walsh through a colleague of mine who is a doctor and confers with him for her own patients. She has told me he would freely help others with all his heart. My own daughter was very sick in the intensive care unit with a severe fungal infection and neuroblastoma at Johns Hopkins Hospital. Dr. Walsh followed my daughter’s severe infectious disease and he never asked for a single penny. Dr. Walsh had no obligation to take the time out of his busy schedule to leave his research and drive to the John Hopkins hospital in Baltimore in May of 2006 to check on my daughter’s progress. He closely watched over her safety of being either underdosed or overdosed with her antifungal medications. He is the world’s expert in the type of infection that she had. He kept following up on her status with her primary team doctors. I still am amazed that he sincerely asked me not to hesitate to get in touch with him during his official business trip to Geneva, and that I could leave a message with his secretary and he would get back to me as his time would allow. I often took his time when he was with his kids to answer my questions about environmental concerns when my daughter was allowed to go home after 101 days in the hospital due to the severity of her infection.
All I can say to you is just keep your faith in God and in him. I wish little Anna a speedy recovery. Our thoughts and prayers are with you in this difficult time.
Sincerely,
Iman Hamad
Carson’s Story
Dr. Kathlyn Ignacio, Carson’s Mom
December 6, 2006
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.
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
Tiffany’s Story
Rachelle, Tiffany’s mother
Dr. Walsh
I am writing this letter in regard to my daughter Tiffany Dupont. When Tiffany was sent to LeBonheur Children Hospital in Memphis she was a very sick little girl. She was on several different medications which kept fungus from growing anymore, but they were not shrinking the mass behind her eye. Drs. Arnold and Wilson are awesome doctors and were not giving up on my little girl. Dr, Arnold came in Tiffanys room one morning and said she had been discussing Tiffany with you and you had suggested giving her Leukine and see if it would help, Dr. Walsh, within 2 days of Tiffany being on this medicine the swelling in Tiffanys eye went down drastically, that was the first time I had any real hope that her eye could be saved and moreso her life, she was to the point that the swelling was so bad she stayed nauseated and would not eat, she went from 62 pounds down to 51 pounds. After two days of being on Leukine she was eating and feeling so much better. My husband and myself thank you for giving us hope. We owe so much to you, there are no words to express to you how greatful we are. Each and every morning I thank God for bringing you into our lives. Dr. Arnold has told me so much about you, the kind of person you are and how much you wanted to help Tiffany. Because of you Tiffany is back in school and doing wonderful and is a very happy and healthy 12 year old. If there is anything I can ever do for you please dont hesitate to call me. Maybe one day we will get to
meet you in person and we can thank you personally.
Yours Truly
Rachelle Dupont
A Friend’s Appreciation
Jamel Tyler, Joey’s friend
Dear Dr. Walsh,
My name is Jamel Tyler, you met me when Doris Rogers and I came down to the NIH. I want to thank you for the research that you were conducting that kept Joey alive. As you may very well know, Joey was, and always will be, one of my best friends and touched the life of every person he came into contact with. He was someone you could go to with just about any problem and he’d find a way to help you. I can say for certain that if I had never met Joey that I never would’ve gotten to do half the things I’ve done.
I met Joey on a cab ride home from High School, we had missed our buses and wound up sharing a cab again. Now I never thought I’d see him again, that is until I walked into the Cancer Institute and saw him standing there. Needless to say I was surprised to see him again. Since then we had become best friends. I knew I wouldn’t be able to tell you how amazing he was in just this letter, but I’m determined to try. Because of Joey I got to experience many new things, such as going to Las Vegas with him and his mother.
Honestly, I can’t say enough about Joey. He was always in a good mood about something even when he was in the hospital. I remember back when we would sit in each other’s room and just hang out and talk about random things. Then he got to meet all of my other friends Rob, Mike, Adam, Matt B., Bell, Lennie, Adam’s younger brother Matt, Jay, Josh and Amanda. He became friends with them just as quickly as he became friends with me. When he became sick for the last time at least one of us was there with him to keep him company after we sent his mom home to get some rest.
The night we found out that Joey was in the hospital and we were told that wouldn’t make it through the night, Adam and I went up to get Matt B. from school in Connecticut and got back as fast as speed limits would allow us. A while after he died, I told a friend that the only time he ever made a woman cry was the day he died. Joey was, has been, and will always be our best friend and brother.
We can’t thank you enough Dr. Walsh for all the times we got to spend with Joey after you saved his life back in 1999 and everytime after that. We would have never met him if it were not for you. Joey always talked about how out of all his doctors, you were always just a phone call away and that there was nothing you couldn’t do for him.
Sincerely, Jamel Tyler, Joey’s “Walk My Shoes” friend
A Friend’s Appreciation
Michael Peterson, Joey’s Best Friend
Dear Doctor Walsh,
To say that you have an impact on other peoples lives is an understatement. The patients you treat and the people you see on such a consistent basis makes you more than just a doctor, it makes you more like a shining beacon of hope. When I first heard about you, I was standing next to the hospital bed of my close friend Joseph Owen Rogers. There was a bit of a discussion about “options”, something I had learned to dread for the past month or so that had seen Joe in and out of the hospital all too often. When I heard that word, “options”, I was always certain that it meant that hope was running dry and that I was not going to spend much more time with someone whom I considered a brother. The word may have been a bit much for everyone there assembled, but Joe would not be depressed and instead thought immediately about a doctor whom he held in respect, a Doctor Walsh.
At the time, I had no idea who you were, or what hope you could bring to Joe at the time, but I must say that I’m forever grateful that you did. For the next few months, Joe seemed to get better. The promise of a new treatment, any treatment, would get him excited. He would talk longingly about getting to see you, and not just about what help you could provide. In a time when Joey was very fond of reminding me that doctors were all “just practicing, and not ever sure what their doing”, whenever he spoke about you there was a distinction made. Joey thought the highest of you, and called you one of the coolest men he had ever met. Since I wasn’t one to ask, I never did get to know much about you from Joe, but every time he would see you, he would seem to be in a happier mood than he had been in. Now it might not seem like much, to say that Joe was happier, but to me, this meant everything. At that time, Joey, who to me always seemed to be tired and infuriated and depressed, came back to life. He became the man that I knew, the man who I considered a brother in arms. To have him back, optimistic and reveling in the present was worth more than anything ever done by any doctor for Joe in my eyes.
Too many see their position as a doctor as a matter of treating as many as you can. That goal is worthwhile, and it never gets as much credit as is due, but men like you, Dr. Walsh, are not given even close to the respect that you deserve. I would shudder to think what the world would be bereft of people like you, who bring hope. I hope that in some small way, I can repay you for the kindness of action that you gave to my brother when he was in need. I wish you good luck and fortune in your life sir. May life give you what you deserve for being more than a man, more than a doctor. For being a beacon; A bringer of hope.
Thank you for all that you have done,
Michael Christopher Petersen
Joey Rogers Friend
Profound Thanks
Lorraine and George, Joey’s Grandparents
Dear Dr. Walsh:
This letter is being sent to thank you for the care you gave to our grandson, Joey Rogers. We know in our hearts how much you cared for him as he thought the world of you. The fact that you traveled twice to New Jersey to assist his doctors with his care was sign of profound unselfish desire to help him. Your devotion and dedication to Joey gave our daughter, Doris, more time with him.
Our family extends our profound thanks and gratitude to you and your research team for the care, support and love you graciously gave to Joey and Doris.
Lorraine & George Ahrens
Joey’s Grandma & Grandpa
Joey’s Story
Doris Rogers. Joey’s mother
It has been 1 year, 5 months, and 13 days since my son passed away and today I feel compelled to draft this letter on behalf of an amazing humanitarian, Dr. Thomas Walsh. I have known Dr. Walsh since the summer of 1999. At that time, my 15-year-old son, Joey, was a patient at St. Barnabas Medical Center in Livingston, NJ. He was 2 years post MUD BMT (matched unrelated bone marrow transplant) for Wiskott Aldrich Syndrome and had been diagnosed with disseminated Aspergillus Fumigatus in his lungs and brain.
Joey was failing on the FDA approved anti-fungal medicine and time was of the essence. Hearing about Joey’s health crisis, a family friend gave me Dr. Walsh’s contact information. Dr. Walsh had lovingly cared for his son at the NIH years ago and had displayed great compassion for his child and intense passion for his work.
The Aspergillus infection was not Joey’s only threat. He was having bouts with GVHD (graft vs. host disease) early out from BMT, which manifested on his skin. As time passed, GVHDviciously attacked his esophagus causing strictures leaving Joey unable to swallow his own saliva. Many treatments were tried. The main stay was high dose steroids (prednisone). Not presenting a substantial change for the better, his treatment was then changed to oral Thalidomide. After several weeks of treatment, as well as daily dilation of his esophagus, at C.H.O.P. in Philadelphia, Joe was able to swallow again.
In July of 1999, his airways became tightened and his breathing became labored. No one had ever spoken to us about the possibilities of Aspergillus invading his body while on steroids, or how to prevent it while one’s body was severely immuno-suppressed. On July 21, 1999, my son and I would receive a horrifying lesson in the dark arenas of deadly fungal infections.
CT scans and MRI’s of Joey’s lungs and brain showed multiple lesions, with one very large lesion deep seeded in his brain stem. Most of his lungs displayed the mosaic pattern of Aspergillus. The treating facility in New Jersey had begun to request experimental medicine from Pfizer (Voriconizole).
Joey failed on both these experimental drugs. Neither one of these drugs helped to stabilize his condition and the fungus was growing rapidly. the health care facility refused to get IRB approval for two other experimental anti-fungal drugs. I was told to face the fact that my son was going to die. I then had Jowy transferred to Robert Wood Johnson University Hospital and I enlisted the care of Dr. Barton Kamen.
After much communication via phone, Dr. Walsh traveled up to New Jersey, ay his own expense, to meet with Joey’s pediatric oncologist, Dr. Barton Kamen of the Cancer Institute of New Jersey. December 21, 1999 would be the turning point in my son’s life for the better. For Joe and I, our Holiday gift was Dr. Thomas Walsh. He also gave Joey a gift. It was a Beanie Baby beaglle whose name was TRACKER. He told that he would keep track of his care.
Dr. Walsh sat at Joey’s bedside for hours talking to both of us and his doctors about his treatment and about the remaining two salvage drugs that may be available, both of which Joey was not of the protocol age. communication was made with Merk regarding their MK0991 anti-fungal as wll as Fujisawa (now Astellas) whose company could provide Ambisome in conjunction with their new experimental anti-fungal FK463. Joe’s condition was rapidly deteriorating.
Joey failed on the Merk drug and was switched to the Fujisawa drug, FK463 with Ambisome. Dr. Walsh worked diligently with Dr. Kamen in setting up the protocols as well as the labs and scans to monitor the Aspergillus. Joey started to experience pain in his spine and couls no longer stand or sit. An MRI of the spine showed the Aspergillus had spread and was eating through the spongy madd between L4 and L%. He was loosing weight drastically. Dr. Walsh suggestes aggressive nutritional management, explaining that the infection was devouring Joe’s caloric intake and that it was paramount for him to receive at least 2,000 calories a day. Joey agreed to have a feeding tube surgically placed.
Dr. Walsh’s caring and compassion did not end after he returned to NIH. He kept in constant contact with me as well as Dr. Kamen. We spoke for hours via phone. He inquired not only about my son’s physical condition, but also h is emotional and mental status.
One of the local newspapers (The Star Ledger) wrote an inspiring article of Joey. the interviews Dr. Walsh and he referred to my 15-year-old son as a “Phenomenal Young Man”.
Joe’s condition improves after many months. He was released from the hospital and continued I.V. treatments on an outpatient basis. With dramatic improvement of his brain MRI’s, Joey was finally transitioned to oral voriconazole. Thanks to Dr. Walsh’s guidance, he was healthy and happy once more.
September of 2004 Joe was diagnosed with ESRD (end stage renal failure). Both kidneys no longer functioned. Again, we called upon Dr. Walsh for his assistance. Again he answered the call.
Dr. Walsh called one morning to check on Joey’s status. I informed him Joey was loosing weight again and having numerous lung infections. This Good Samaritan again traveled back up to New Jersey to visit Joey. A roundhouse meeting was arranged with Dr. Walsh to meet with Joey’s many specialists to help develop a plan of action. It was July 2006 that Joe was re-admitted for pseudomonas infiltrate in his upper left lung. the lung had collapsed after a needle aspirate and a chest tube was inserted. Joe was weak and feeling beaten. Dr. Walsh lovingly took his hand and reassured him, “You’re a Phenomenol Young Man and therefore you can beat the odds again.”
Dr. Walsh once more worked diligently with my son’s specialists. Joe pulled through.
2005 GVHD had attacked his body in full force tightening his skin and leaving him wheelchair bound. there was very little he could do for himself…but he kept on smiling. He started Photopheresis treatments at Morristown Memorial Hospital as a possible cre for his severe GVHD. After several weeks his skin started to become less and less taut and he was enjoying simple things like brushing his teeth.
October 30, 2006 while at an emergency visit to his infectious disease doctor for rattles and crackling in his lungs, I was told to bring him to the emergency room ASAP. Joey also complained of stomach pain. Cat scans indicated an enlarged pancreas. His pulmonary doctor also saw on the scan an inflitration of his lower left lung. He was admitted that night. On November 2, 2006 a bronchoscopy was ordered and cultures started. He was diagnosed with Mucormycosis. Joey started to suffocate on his own carbon dioxide and was intubated. We were devastated. I placed a call once again to Dr. Walsh requesting his help.
The physicians at Robert Wood Johnson University Hospital were elated to receive his input and knowledge. A plan of action was devised. At the request of Dr. Walsh, my son was placed on two anti-fungal medicines, Ambisome and Casperfungin as well as iron binder and GMCSF. After three weeks on Casperfungin, Joey developed Thrombocytopenia and severe diarrhea. Dr. Walsh again requested a change of medication. He stayed in constant communication with Joe’s attending physician, the CCU team, and myself. Dr. Walsh never let me give up hope.
It was now December 6, 2006, and my son’s latest x-ray showed major improvement of the left lung. Joey was still here…still fighting. Without Dr. Thomas Walsh’s brilliant mind and humanitarian heart, my onlyl child would have passed away weeks ago.
Dr. Walsh kept reiterating how paramount it was to wean Joey off the vent. As time progressed and the constant built up of fluid in his lungs weakened him, it became more and more difficult to do this. Joey had now developed a Klebsiella bacteria infection. He was being dialyzed 6 days a week for the past few weeks due to fluid overload as he was unable to move on his own. He had to be turned constantly to heal a stage 4 bedsore on his lower back. His GVHD had progressed to the point where the skin was so contracted it was crushing his muscles and he was inexcrutiating pain. Photopheresis was initiated once more. His tired frail little body began to react slowly, yet positively and he was showing less frequency of pain. A few days later, photopheresis was discontinued per the oncology team because of low hematocrit levels. After months of fighting, there was o further hope. That afternoon his lungs filled once more and the pulmonologist told my son that he would have to undergo a very painful chemical treatment to his lungs. He whispered, ” Whatever it takes to keep me here with my mom. I don’t care how painful it is…I can’t leave her alone. I took my son’s hand and told the doctor we would discuss this and let her know in the morning. Back at the NIH Dr. Walsh, along with the Pain Management team, concluded that photopheresis should be used for palliative measures. That night the pain was so intense for my son he screamed out, “I want to go home to Jesus…Mommy show me how to get to heaven!” I told my son that I could no longer watch him suffer for me, that I would be ok and that he needed to do what was best for him. I told him I was sorry there was no hope.
In the early morning hours of March 4th, Joey made the decision to be disconnected from life support. He wanted to write his own eulogy and asked a friend to type for him. I carried out his last few requests. everyone who loved him surrounded him. His nurse capped off his tracheostomy and he told all his friends how much he loved them and that he would be waiting for them. He closed his eyes and passed away in peace at the age of 22 at 2:22 in the afternoon.
Dr. Walsh called the following day to tell me that it was decided that photopheresis should be used as palliative care and that he was going to call Joey’s doctors. I told him it was too late that the pain was too much for him to bear. Dr. Walsh repeated over and over again, “Oh no…Oh no.” I could tell by his voice he was devastated. I told him that he did everything beyond what any doctor could have done. That because of the care he gave my son, the years of dedication, and the important research advances by him and his team at NIH, I had more time with Joey than anyone had ever imagined. He enabled Joey to go away to camp, drive his first car, graduate high school, and experience the joy of attending two proms and enroll in college. Joey’s whole life he never had real friends until 2002. If it were not for Most importantly, Joey intimated to me things I would have never heard and never known of it were not for Dr. Walsh. Joey and I shared many more smiles and much more laughter in the last 6 years of his life. He told me that he “IGNITED MY PASSION” and that he loved me “FROM THE DEEPEST OCEAN…WAY PAST OUTER SPACE.” Because of “Dr. Tom”, I was able to watch my son become an exceptionally caring and giving young man. I attribute it all to the stellar care he received from a doctor who is not onlly an outstanding humanitarian, but also a man who has purpose and passion for his work in curing the masses.
My son loved Dr. Walsh dearly and trusted him implicitly. Before any care was given, Joey would ask me if I conferred with “Dr. Tom” first.
As I previously stated, Dr. Walsh referred to my son as “The Phenomenal Young Man.” Indeed…it is Dr. Tom who is “The Phenomenal Man.”
With my Profound Gratitude,
Doris M. Rogers
Joey’s mom
Reed’s Story
Ben and Yvette Favret, Reed’s parents
Dear Dr. Walsh:
Words will never express or begin to capture the sinking feeling in my stomach, the level of fear or the torturous thought that passed through my mind when our child was diagnosed with Melanoma last year. The unknowns and questions, combined with the innocence of a three year old, will rock your foundation of faith and core beliefs at a time when you need them the most.
I am similarly lost for words in attempting to express the gratitude Yvette and I have to you for the guidance, support and friendship you continue to provide us during this ordeal. Your care extends far beyond the clinical advice and guidance that has been precise, based on the evidence, and presented in a manner that made the complicated simple. Your tireless devotion and compassion for children and their families has reinforced our personal faith and proven the goodness of mankind.
I am resolute in my belief that people such as you have been called to serve and care for others like a member of the clergy is called to serve God. Tom, you are truly an angel on earth.
Bless you.
Letter of Thanks
Dear Dr. Walsh,
My husband and I can’t thank you enough for the care and support you gave us when my daughter was diagnosed and hospitalized with Lyme meningitis. Your thoughtfulness and insight calmed our fears. Answering all our questions helped us make the proper decisions concerning the treatment.
We have never met a physician who has gone above and beyond the call of duty as you have. Your presence at the hospital made us relax and feel comfortable in a tense and life-threatening situation.
Thank you again for the unprecedented support. More physicians should emulate your dedication to healing others. You are truly a great example of what a physician should be.
Nicole’s Story
Jenny Evans, Nicole’s mother
I am writing to you to strongly support Dr. Tom Walsh, not only as an excellent physician and researcher, but as a wonderful advocate for patients everywhere.
In July 2002, my seven year old daughter,
Nicole, was diagnosed with Acute Lymphoblastic Leukemia. Twenty-eight days after this devastating diagnosis, she was then diagnosed with cerebral aspergillosis, a terrible fungus invading her brain. Having been an R.N. for eighteen years, I knew this situation was grave.
At Children’s Hospital of Orange County, in California, Nicole’s infectious disease physician Dr. Antonio Arrietta, turned to Dr. Walsh for his guidance and expertise in the field of new antifungal medications. dr. Walsh was called on numerous occasions each week to assist in her treatment. His expertise, which was free of charge I might add, was instrumental in Nicole’s cure of this life-threatening infection. Because Dr. Arrietta was able to eliminate this infection, Nicole was able to continue her chemotherapy and ultimately has been in remission for five years.
Everyday I think about how lucky I am to have my daughter in my life, even when she can be a teenager with attitude 🙂 Words cannot describe how grateful I am to Dr. Walsh for assisting Dr. Arrietta in saving my daughter’s life.
Thank you for everything you have done for my family.
Susan and Howard Slotnick
Dear Tom:
We are writing this letter to moralize our deepest and sincerest appreciation for all of the help and advice extended to us, our family and friends during the past 20 years. On countless occasions and due to the exigent need for advice, expertise and wisdom you have never failed to let any of us down. Your genuine willingness to assist those in need and extend appropriate recommendations has been absolutely invaluable.
When we first were introduced to you our needs, critical at that time dealt with our son. Through you intercession, knowledge and strength we can undoubtedly say that your assistance was critical to his battle and eventual cure of ALL and its effects. There after we have introduced you to others with varying medical conditions and you have proven to be wise and as strong with them as you had been with us. Your help cannot be aptly described in words. The help has been shown by those who you have helped to cure and to live through the conditions that unfortunately plague many.
Again we thank you for all of the help that you bestowed us and others.
Rafael Jr.’s Story
Rafael and Doris Rivera, Rafael’s parents
Dear Dr. Walsh,
I’d like to express in this letter our gratitude for the invaluable guidance you have given to all the different doctors that have been treating our 8 year old son, Rafael Jr., since last year in Phoenix Children’s Hospital. As you well know, this strange fungal infection that attacked him had all of the Infectious Disease doctors puzzled. It was probably caught by him from a lizard, since he used to play with them.
The infection started in his mediastine, spreading to his backbone and creating a life threatening Meningitis. After your recommendation to Rafael’s team to use Fluconazole, which was the only medication that actually helped, since other antifungals were not slowing his inflammatory markers, we were very hopeful that a solution was finally going to be found. However, it only slowed the progress of the fungus, since it still compressed his spinal cord, endangering him to become completely paralyzed from the neck down. That’s when an emergency decompression was done by the neurosurgeons, but this only promised to be a momentary solution.
We do believe that if you hadn’t intervened even more at that moment and led the doctors to add the other 3 medications to his treatment, he would have become eventually paralyzed and probably died. Then you proceeded to guide the team of doctors on a day to day basis through a very complicated management of both Rafael’s medical and surgical therapies. Although 1 or 2 of these medications probably had an adverse reaction on his organs and caused the Diabetes and High Blood Pressure that he is actually experiencing, they were necessary and these are health problems that can be treated and his life is not in danger anymore. Now my son is playing and having an almost normal life again, and God willing, we expect these problems to disappear completely on the future.
We have no words to express our gratitude for all you did for our son throughout all these months, even helping us get the GMC SF that Bayer donated for 6 months, which is essential for Rafael’s continuing treatment. For all of us, you were used by God to save our son and we pray he will continue to give you the wisdom and the heart to help other children in the future. God bless you Dr. Walsh.
Madelaine Schmidt
Dr. Walsh is a wonderful, caring, and blessed infectious doctor specializing in diseases resulting from cancer. He was amazing and kind and knowledgeable when caring for my mother Julia at New York Presbyterian Hospital. He answered all of our questions and treated my mother with dignity and respect when very sadly she was dying of lymphoma. My family and I will NEVER EVER forget his love and concern for my dear mother whom I lost on July 8th, 2012. We will always remember how he cared for the needs of not only my mother but the rest of my family. All physicians should follow his concern and dedication. He is a true role model for ALL physicians – especially those who deal with the terminally ill. God bless you Dr. Walsh. You are a true professional who deals splendidly with both the spiritual and medical needs of the patient and their families. We will continue to keep in touch with you always!
Sincerely and gratefully,
Madelaine Schmidt – daughter of my beloved deceased mother Julia Schmidt
Every day in the hospital Dr. Walsh came to see my daughter. Initially Camille’s eye 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.
Mission From The Heart 