Ed Irwin’s Leukemia and Transplant Journey
My name is Ed. I am a biomedical engineer, primarily focused on the cognitive and biomechanic effects of work, aging, and disability. I was born in 1960, so before Leukemia happened to me my wife Elizabeth and I had seen our three sons grow up, start their families and careers, and leave us to begin building our post-middle age lives together. At age 57, I enjoyed excellent health – swimming a mile, four days per week, and working full-time as an engineer and research scientist.
I knew something was wrong one morning, when I could not complete my swim. My family doctor and friend, Dr. Paul Mossman, took blood for labs and I went on my way. But when he called later and said my white blood cell count was below normal, I realized life was going to change dramatically. He referred me to Northside Hospital Cancer Institute in Macon, where they verified I had developed Acute Myeloid Leukemia and made an urgent appointment for me with the Blood and Marrow Transplant Group at Northside Hospital in Atlanta.
I had never experienced the speed at which the medical system can operate when needed. One day I was working, exercising, and enjoying my three grandchildren alongside Elizabeth, then the next week I was in-patient on the BMT ward at Northside Hospital in Atlanta. It was surreal. I spent the intervening time researching AML variants, treatment options, and survival statistics, and planning for what looked to be an intense and protracted recovery process.
My AML variant was determined to have intermediate risk of death in the short-term. It required aggressive treatment involving complete elimination of my bone marrow cells, with replacement through stem cell transplantation from an allogeneic donor – in my case, one of my sons. All three boys volunteered, but only my youngest son Zachary was in the continental US. He and his wife live nearby in Birmingham, Alabama.
What a gift! I worried about the pain he might have to endure to retrieve stem cells from his bone marrow, but the doctors were able to just stimulate extra stem cell production with an injection and harvest the cells from his blood. After my bone marrow cells were eliminated with chemo and radiation, Zachary’s cells were given to me as an infusion.
It’s no exaggeration to say the physicians at Northside are the best in the country, if not the world, at treating blood-related cancers. From customized treatment plans based on genetic markers to research-based post-transplant care protocols developed through their own research efforts, the team of doctors at BMT provided comprehensive and highly responsive care at every step. My primary doctor, Dr. Asad Bashey, impressed me with his caring demeanor, his encyclopedic knowledge, and his ability to give Elizabeth and me realistic milestones that proved incredibly accurate.
I cannot say enough about the care I received at BMT-Northside. The nursing staff cheered for me and encouraged me through every arduous step, from shaving my head when my hair started to fall out, to giving me advice on yoga meditation, to celebrating every lap I walked around the infusion clinic pushing my IV pole. The medical assistants who collected daily blood samples always had a smile and a word of encouragement for me. My nurse practitioner, Michelle, gave birth to her first child during the same period I received my stem cell transplant. Now we chat about how Stuart and I have the same (re)birth month. The support staff even helped Elizabeth and me find a rent-free apartment near the clinic when I was discharged from the ward, so she could bring me to the clinic every day.
Elizabeth was, and remains, my bedrock foundation. She slept every night on what had to be the world’s most uncomfortable pull-out while I was in-patient. Then she helped me through the debilitation and recovery from chemo and radiation – always pushing calories, fluids, and medications and watching out for signs of infection or graft-versus-host disease (GVHD). It must have been exhausting and frightening at the same time. With all this, she still found time and energy to make hand-made quilts for loved ones and to keep our friends, family, and extended community abreast of our journey through social media and blogging. I don’t know how I was fortunate enough to have such a sweet, strong, caring woman beside me through all this. I just know I am immensely grateful.
That gratitude extends to my community of support – my tribe, my peeps, my friends, my co-workers. They are the ones who visited, phoned, brought books, sent pre-paid gas cards, or even just emails of encouragement. The director of Mercer Engineering Research Center, the company I work for, kept my job open for me and provided whatever work I could handle during my recovery so I could maintain a path back to normalcy at the pace my body could manage. One dear friend even took Elizabeth and me into her home in Forsyth for eight months, while we worked through how to put our lives back on track.
Here we are, almost five years later, in full remission and back to our pre-leukemia life. With the exception of some effects from chronic GVHD, my health is excellent. I swim four days per week – I hope to reach my pre-leukemia distances in the next month or so. I am working full-time and putting my research projects back together after the enforced absence. It feels great to have my body and mind working like they were before.
Elizabeth and I have six grandchildren now, with one more due in September. It is an amazing gift to see my family grow and to be present for so many milestones I might have missed. Together, she and I travel, play with grandchildren, and birdwatch whenever I am not working. I have promised to retire in 2028 so we can do more of that. I look forward to new adventures with her – hopefully with a lot less life-threatening potential than Leukemia.
BMT and Leukemia Patient Katherine Welch’s Dad, Bayne Million, Pays Tribute to the Northside BMT and Leukemia Staff
Hi Dr. Solomon,
Today, Oct 5, marks five years since Katherine arrived at the BMT unit, and she was assigned to your care as her primary doctor.
As her father, I have thought many times to send you a personal note to say thank you. As you are also a father, you can imagine the depth of my gratitude for saving my daughter and her son. It was a package deal for sure.
Words cannot express my sincere and heartfelt appreciation. The fear I felt that Sunday morning when we arrived was very real. We heard Leukemia on that Thursday afternoon in Statesboro. Cancer was on the office door. On Friday, cancer was on the clinic sign in Savannah. Sunday, cancer was on the Northside Hospital sign. It kept getting bigger and more daunting with each day.
I was so nervous that Sunday morning, I put on what I thought was a head cover before entering the BMT unit and speaking to the nurse at the front desk. She asked if I was trying to be funny. I said no, as humor was the farthest thing on my mind. Unknown to me on my first visit, I had out the shoe cover on my head. We did not know the protocols at the time. We were just so scared.
In three consecutive days, we heard Dr. Larry Morris’ name three times. Twice from friends in the medical profession in Atlanta, and Friday from the doctor in Savannah who suggested Katherine consider terminating her pregnancy to focus on her health. When I asked the same doctor if he knew of any AML specialist who had experience with an expecting patient. He said Dr. Morris. When we heard Dr. Morris’ name the third time on Saturday, I worked the phones until someone told us if we can get Katherine to Northside by noon Sunday, she could be admitted to the BMT unit. God was answering our prayers.
You were the doctor on rotation duty that Sunday for a reason. As time passed, Katherine and Nicholas were glad they had you as her primary. You meant so much to them and to all of our family for both of her battles with AML. You still do of course. And not just you, all in the BMT unit from Stephon on up. You can read Katherine’s own words here.
As you told us about the high risk pregnancy doctor, they only have to catch the baby. Compared to what you and the BMT unit accomplished for Katherine, is truly miraculous. Statistics were against Katherine, and you said let’s just take one day at a time. So wise. Days turned into weeks then months then years, but it was all worth it of course. We are truly blessed.
Thank you Dr. Solomon for Katherine and for Michael. We would not have both without you.
Below are the two photos and message Katherine posted on Instagram this past Thursday. I thought you might like to read it. The last photo is Katherine with Michael for his first day of pre-K this year. She is Michael’s favorite parent by far, as if he knows all she endured. They value each other so much, and their time together continues to make up for the time missed in his first year.
While I truly realize not all BMT patients see year six, I hope Katherine’s story brings you comfort when needed in your most challenging days.
Also know Katherine speaks for the Leukemia and Lymphoma Society when asked, help start and leads the Light the Night Walk in Statesboro, and has friended and helped others on Facebook – especially those pregnant and battling cancer. She also has met her donor in Germany through social media, and they communicate regularly using an app which translates German/English.
As I keep praying for Katherine and Michael, please know I also remember you and all on the BMT team. Prayers work. I also cannot pass Northside on 285 without remembering our time there and praying for all – staff and patients.
Peace and Godspeed,
Bayne Million (Dad and Grandad)
The 5- year survival rate for people 20 and older with AML is 25%. I’ve never looked at the statistics until now.
Sometimes it feels like yesterday and sometimes it feels like worlds ago. My scars have faded, my blood counts have normalized, and my hair has grown. Cancer is becoming a memory in my life. Something I never dreamt I would ever be able to say. Cancer has changed me, there is no doubt about that, and life after cancer is hard. In many areas of my life, I had to start over. I would not be where I am today without God, my husband, my family, my friends, my donor, and Northside Hospital. So many of you have loved me when I was far from lovable-thank you. To my Michael, thanks for saving my life five years ago today. You are my how, when, and why. Always keep your head up buddy!
My name is Bryan Cubitt. I am a 46 year old, living in Atlanta, GA. I am originally from Nottingham, England. My wife Kate is from London and our 5 children were all born here in Atlanta.
Less than 2 years ago in mid-November 2018, I was admitted to Northside Hospital after a routine blood test revealed an unusually low complete blood count (CBC) test results. The night before I had played in a soccer game of kids versus parents to end the Fall season for one of my kids’ soccer teams that I coached. I had no idea that anything was amiss.
Just after Thanksgiving 2018 I received the life changing news – I had been diagnosed with MDS – Myelodysplastic Syndrome. I had never heard of it. The doctor told me it was a condition of the bone marrow and usually affected older people, mostly above 60 or 70 years old. I would need an allogeneic Stem Cell transplant as the only option of a cure. I hadn’t spoken to a doctor in over 20 years and had never been sick in my life, and here I was hearing that I had a serious medical condition that needed chemotherapy, possible radiation and a Stem Cell transplant.
And so my entire life as I knew it was about to change, dramatically. I went through the many phases of receiving such news; shock, disbelief, fear, anxiety, depression, sadness and many more feelings of the unknown as to what lay ahead. I told my family, my friends and my co-workers – all of which was extremely difficult and emotional, explaining over and over again what it was and how it happened and what the treatment was, not really understanding much of it myself at the time.
The BMT program and Northside acted fast and by early January 2019 my transplant donor had been identified – my older sister Alison who lives in England. I started to receive blood infusions and sometimes platelets as my CBC counts fell through January to March 2019, a result of the MDS and also the low-dose chemotherapy I was given (Dacogen). My sister Alison arrived in Atlanta at the end of March. My transplant was originally scheduled for March 24th but unfortunately I developed a neutropenic fever just before so it had to be postponed. Next came the heavy chemotherapy but no radiation – my doctor decided not to give it to me. I finally received my new Stem Cells on April 9th 2019 and I was ready to beat this MDS.
The day after Transplant I went back into the clinic for my daily fluids and drugs but the tough journey was about to begin in earnest. Whether it was an infection or very low platelet counts, they admitted me to the hospital where I stayed in the isolation unit for 4 or 5 weeks. I got hit hard with infection after infection and hit a personal low point in my journey. My tri-lumen chest port got infected and had to be removed, I had a PICC line placed in my arm and then that had to be removed. My spleen was eating up my platelet infusions so fast that my platelet count prior to infusion was higher than my post-platelet count. My taste buds were destroyed by the chemotherapy to where I couldn’t taste anything at all and had no desire to eat. I had to be fed intravenously for several weeks as I went 5 weeks without eating solid food – my weight dropped by almost 50 pounds in 2 months. I had infections of the kidney, liver, bladder, bowel blockages, multiple daily infusions of blood and platelets, drugs and food. I endured X-rays, CT scans, MRI, bone and skin biopsies, was pushed around in a wheelchair and had to have someone dress and undress me and help me take the 8 steps to get to the bathroom. My wife sat by my side all day, cleaning up after me and held my head through the vomiting and the tears, sometimes I was so sick I couldn’t talk for days but she sat there and watched me – it felt good to know she was there. I came close to giving up but she pulled me through.
I went home from being hospitalized at the end of June 2019 but continued to return as an outpatient 7 days a week. Next on the long list of issues was GvHD, Graft versus Host Disease. I developed an all over skin rash, like a red glowing sunburn. I had to cover myself in steroid cream from head to toe morning and evenings. Later I went on to develop other complications from GvHD including my liver. My CBC counts although low, were not trending upwards towards normal range and so it was decided by my doctor that I needed a boost of stem cells from my donor to try to “kick-start” my transplant into producing more counts. This occurred in late August 2019 and by the end of September 2019 I finally started to see some improvement. My numbers were climbing slowly out of the “very low” range.
Today in early 2020, I continue to be a patient at the BMT program but I have my CBC tests performed about once every 10 days or so. I’m still on the road to recovery as I approach the 1 year anniversary of my transplant.
The journey has been and still is life-changing. The nurses, doctors, admin and support staff have been an incredible part of my story and my life. So much so that I am giving back to the program by talking to patients and caregivers about what happened to me from the day my life changed in an instant. How I got through those dark days and nights, how I felt and what helped me to cope, and hopefully it will help others understand the things that may happen to them when they embark on their own journeys into the unknown.
As a father, a husband and a scientist I revert to one of my favorite quotes:
Learn from yesterday, live for today, hope for tomorrow.
The important thing is not to stop questioning.
Bryan Cubitt- NSH BMT patient
Dear Northside Hospital and BMT Team-
I am not sure if I can ever express the amount of gratitude we have for your organization and the entire BMT Unit/ “FAB 5 Team”, that is what we call the doctors at the BMT unit.
When we arrived at the BMT February 1st-we were scared to death, we had no idea what to expect, we knew nothing about this type of cancer, and as a self-proclaimed control freak and fixer – this was something I couldn’t fix.
Dr. Bashey breezed thru the door and we were taken back that he clearly memorized my husband’s entire chart and picked up who everyone was in the room at the time. He walked us thru his chart and condition as if you had known him for years. He was direct, matter of fact, but the confidence he had about what we were facing and what the plan was made us feel comfortable for the first time in 4 days. As we worked with all of the Fab 5 team over the last 7 months, we got to know all their personalities and the way they all went about things. From the occasional jokes from Dr. Morris, to Dr. Sohl and Dr. Solomon negotiating discharge times, (yes apparently you can’t plan cancer), to even getting Dr. Holland to laugh under his mask on occasion and seeing him show up on his day off to personally check on a horrible leg infection. The entire Fab 5 team have been amazing to work with!
As we wind this journey down and focus on remission, I wanted to thank you! Thank you for the dedication you have to your patients. Thank you Northside and your phenomenal team of doctors for all for being direct communicators and answering the crazy questions all the time. Thank you for hiring such an amazing team. From the nurses in the BMT, the EV staff (Stefan), the food services people, the clinic staff (Kristen and Ansley have been rockstars) the team in radiology (Mackenzie has been a complete angel thru 17 lumbar punctures), the mid level staff (Melissa, Ann, Laura, and others) who have dealt with us on good days), to Leslie our coordinator who kept me off the ledge and answered all my random questions without hesitation, and of course Else who was always a smiling face when we arrive! The TEAM is NAILS!We don’t know all the staff personally but the Northside BMT Team and the FAB 5 will be part of our family forever. Thank you for your dedication to Beating Cancer’s A$&, for being an anchor for us during this terrible storm, and for most importantly saving my husband’s life! We will forever be grateful for all you have done.
We have a small gift as my many people ring a bell when their journey is over. It symbolizes- being done and I think every clinic should have one. It is mounted on an anchor, as you all are the anchors for many of your patients!
We hope when we come back on a volunteer basis we will see it hanging in the hallway for your future fighters!
Thank you ALL again, for everything you do!
Heather and Geoff Pastrick
Geoff Pastrick- NSH-Leukemia patient
When I was 26, I was diagnosed with adenocarcinoma of the small intestine. I had surgery to remove the tumor and then six months of chemotherapy. At five years out, I was considered a cure. It was my worst fear that I would be diagnosed with cancer again.
By age 33, I had gotten married and moved from Alabama to the Atlanta area. Just past my 33rd birthday, I had a relatively routine visit with my gynecologist. I complained of frequent, painful periods, so my gynecologist decided to do some lab tests to see if I was anemic. What she found was much more serious.
Two days after testing, my doctor called me with the results of my lab work. My neutrophil count was critically low. She told me she had made an appointment for me with Dr. Solh, a hematologist. Then she called me back and said Dr. Solh wanted me to come to Northside to the emergency room immediately to have my labs redrawn.A short visit to the ER confirmed my worst fear: I had leukemia. Dr. Solh broke the news to me and my husband. To say we were devastated is an understatement. Despite being an Intensive Care nurse, I knew very little about leukemia. It was terrifying not only to have cancer again, but to have one that was so serious and one that I knew very little about.
Dr. Solh told us he would be admitting me to the Blood and Marrow Transplant Unit (BMTU) and that I would have a bone marrow biopsy the next day to determine the type. What I didn’t know was that I was being admitted to one of the best hospitals in the country for treatment.I had my bone marrow biopsy the next day. The biopsy confirmed that I had Acute Myeloid Leukemia (AML). A bone marrow transplant was the recommended route of treatment, but first they needed to get my leukemia into remission with chemo. My biopsy was on a Friday and I began chemo on Sunday.
Dr. Solh explained that the chemo was to get my leukemia into remission, but ultimately, I would need a bone marrow transplant. Being an only child, I didn’t have siblings as possible matches. Each parent was only a 50% match, no one else in my family matched and neither did any of my friends. Dr. Solh and his team put my information into a worldwide database to begin searching for an unrelated donor. Within a month, I had not one but two 100% matches!!
In December, an infection put me in Northside’s intensive care unit. I quickly became septic. It was a terrifying, week long near death experience. Once again, the incredible Northside staff saved my life. Once I was out of ICU, my transplant was scheduled for January 21, 2016, just over three months from the date of my diagnosis. My family and I all thought my journey would be over after transplant. Little did we know, the journey was just beginning.
I spent the next two years fighting Graft Versus Host Disease (GVHD), an expected complication after transplant. GVHD happens when the donor cells begin attacking the new body systems because the donor cells see the body as foreign. Initially I had sores in my mouth, then intestinal GVHD, followed by skin GVHD and finally, musculoskeletal GVHD. I was hospitalized around 20 times with the intestinal GVHD and then battled the other forms as a patient at the BMTGA clinic.
Every step of my battle, from diagnosis to transplant to GVHD treatment, I was treated by Northside’s Blood and Marrow Transplant Group of Georgia. When I was hospitalized, I spent almost the entire time on the Blood and Marrow Transplant Unit. The only exception being the week I spent on a ventilator in ICU. I have no doubt that the amazing care I received is the only reason I am here as a survivor today.
The sheer number of people involved in treating a leukemia patient is unbelievable. I had doctors, nurses, techs, medical assistants, transplant coordinators, physical therapists, occupational therapists and more that treated me both in and out of the hospital. Each one remembered my name, my story, and my diagnosis. The care that I received was not only personal, but exceptional.
Today, I am just over three years from transplant. I am working again as a nurse. I play softball in a recreational league. I’m currently in training, along with two other leukemia survivors, to be a volunteer and host for bone marrow drives. My life has returned to ‘normal’ as much as it possibly can, but it’s a different normal. Every day that I wake up, I am grateful. And I know I owe a large part of that gratitude to all the amazing staff at the Blood and Marrow Transplant Group of Georgia, Northside Blood and Marrow Transplant Unit, and Northside ICU. I wouldn’t be here today if not for these incredible people.
Beth Wilson NSH Leukemia/BMT patient
While I was in the hospital for my induction treatment, my three siblings were tested to see if they would be a positive bone marrow match in the event I was able to have a bone marrow transplant. A transplant was the only real cure as a relapse was fairly certain given my prognosis. My younger brother qualified to be a donor for me, provided I got through the treatment ahead.
Following the chemotherapy treatment, the doctors were very positive with me after my disease started to disappear. I started to glimpse at the possibility that I may get to go home soon.
When they told me I could go home four weeks after I was admitted, I cried. I was still exhausted, but I started to feel like I might survive this experience. Although the chemotherapy treatments were very difficult, I was eager to finish this up and get straight to the transplant.
Recovery over the next year was a slow but steady climb back to health. I gradually had less and less need for transfusions, infusions of potassium and magnesium, and felt better and better. I walked with my brother in a Run for Leukemia six months after the transplant. Eventually, I was one year post transplant and felt about 90% of the way to normal. I don’t think I felt 100% myself physically for about 18-24 months.
Words of Wisdom
Doing laundry, making dinner for my children, watching them play, and being with my family was never as wonderful as it became after my diagnosis. I still look at the people I love and the sky outside and feel so incredible. I don’t know why I got to survive this deadly disease but I appreciate it completely. If you have to experience such difficult treatment, be sure to surround yourself with people you trust and keep yourself hopeful. The feeling of hope will keep your point of view positive and this is important to finding happiness during your experience.
It has been 17 years since I was diagnosed with AML and went through all the treatment. I can never fully thank all the nurses, doctors, hospital staff and family and friends who carried me through this experience. But I think of them all frequently still. The doctors were beyond brilliant. The nurses were engaged, intelligent, and phenomenal at stopping problems before they could happen. From the tech who checked my blood pressure machine in the middle of the night and told me she was praying for me, to the pharmacy tech who told me he said a prayer whenever he prepared the chemo for infusion. They all had a hand in my recovery and I think of them and the goodness that surrounded me.
Margaret Marcinkowski: NSH BMT/Leukemia Patient