Eracin' Steve Birmingham's Cancers!
December 26th 2013, our dad’s life was forever changed. Stephen Birmingham was diagnosed with cancer, a very rare cancer. So rare, in fact, there is no documentation of anyone else ever being diagnosed with his particular strain of the disease. Initially, the cancer presented itself as a tumor on his right wrist. After being misdiagnosed for three years as a ganglion cyst, the tumor began to grow and become painful. This is when his general practitioner referred him to a specialist, Dr. Brian Van Tine, MD, at Siteman Cancer Center in St. Louis, Missouri. Upon biopsy, it was determined that he has a very rare strain of Myoepithelial Carcinoma, a tumor of the softtissue. The doctors informed us that it was impossible to know what type of treatment would work to shrink or kill the cancer, being that they’ve never seen this strain before; he is an enigma. They performed a PET scan to check for metastasis, and discovered that the cancer had spread to the nearby lymph nodes under his right arm. With no time to waste, surgery was performed to remove the tumor and infected lymph nodes. Shortly after surgery, 10 months of chemotherapy and multiple radiation treatments were performed. Then, we got the best news, he was in remission, he got to ring the bell!
Fast forward one year, October 28, 2015, the cancer was back, and had now metastasized to his lungs. Doctors immediately restarted chemotherapy with the belief that if it put it in remission before, hopefully it will do it again! After multiple grueling rounds of toxic chemotherapy, the doctors determined that the cancer found a way around it and continued to grow. All was not lost, there was hope in a new immunotherapy treatment, Opdivo! Whereas chemotherapy drugs attempt to fight and kill cancer, immunotherapy aims at building up your own immune system to fight the
cancer itself. Like chemotherapy, the side effects were pretty debilitating; nausea, body aches, extreme fatigue, weakness, basically feeling as if you have a never ending flu that you just can’t shake. CT scans showed the tumors in a holding pattern for a few months; they weren’t growing, but they weren’t shrinking either.
This brings us to July 2016. Another Immunotherapy drug, Keytruda, showed promise for use in his type of cancer, so the doctors were confident in adding this new drug to his regimen. We had such hope in this new drug, we couldn’t wait for them to start it! However, his body had other plans. The extreme fatigue became even more debilitating, a complete lack of energy and weakness began to take hold. Something was amiss. Blood tests showed that he was losing blood, quickly. All immunotherapy treatments were put on hold until they could get his body strong enough to continue to withstand the fight. He began having 1-2 pintsof blood transfused every few weeks, then 1-2 pints every other week, then 3 pints was lost in one week. In September 2016, Dr. Van Tine referred him to Dr. Camille Abboud, MD, a hematologist specializing in Bone Marrow Transplants and Leukemia, also at Siteman Cancer Center. Upon bone marrow biopsy, he was diagnosed with, Secondary Myelodysplastic Syndrome, or Secondary MDS. MDS is a group of “diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder.” It is a pre-leukemic cancer that is not cureable, only treatable with chemotherapy and a bone marrow transplant.
How does one get Secondary MDS you ask? Well, it develops due to the harmful effects that chemotherapy and radiation for cancer treatments have on one’s bone marrow. Yes, that's right, he developed a new cancer as a side effect of treating another cancer. Is this a joke you ask? Nope, not a joke, it is a nightmare. This type of MDS often rapidly develops into AML, or Acute Myeloid Leukemia. We were told a person with this disease, at his stage, without treatment, only has about 6 months to live. Now comes the tough decisions by the two doctors, which cancer is more immediate in its need for treatment to prevent further growth of the diseases? Or, are they both as emergent and should be treated at the same time? They chose the latter. A new chemotherapy was started for the MDS, this consists of seven straight days of chemotherapy once a month, and then immunotherapy one day every other week, for life. All the while, still continuing whole blood and now in addition to that, platelet transfusions. He made it through the first full week of chemotherapy and one round of immunotherapy when he began to exhibit signs of pneumonia.
That brings us to present day, three weeks spent in the hospital fighting one ailment after another: low sodium, acute kidney failure, AFib episodes, fear of stroke and blood clots in his brain, severe edema (he has up to 35 lbs. of extra water weight!), multiple infections, disorientation, and the list goes on. The fantastic doctors at Siteman are trying everything they can to find a balance in medications and treatments to get him back to baseline so hopefully they can restart the chemotherapy and immunotherapy treatments for the progressing cancers.
I have never seen someone so strong get knocked down so hard, and keep fighting. I know in my heart he would not be able to do this without my Mom. How she holds up, I have no idea! For the past three years while my Dad has been unable to work, she has worked around the clock, some times holding three different jobs to keep them afloat. With everyday living expenses, medications, and medical bills that have been piling in for the past three years and will continue to do so, it just isn’t enough, and it’s time for a break.
My Dad needs someone with him to help fight these battles. Not only emotionally, but physically. When he gets out of the hospital he will need someone with him the majority of the day to help care for him while restarting treatment. He is going to have to enter a rehab facility for a while, as he has lost all ability walk and most unfortunately, the ability to care for himself. My mom needs to be with him, for both their sakes. She needs to be able to cut out maybe one or two jobs for a while and focus on getting him better. We are asking for help, from all of our friends and families. I have no idea where the next few months are going to take us, let alone the next few days. During this time, please help me make it possible for my Mom to be able to be with my Dad when he needs it the most. They can use all the help they can get! Through this journey, my family has had some pretty amazing angels step in and assist when things got really rough (The Concord Grill, (especially Debbye and Steve Greer), Katie Slazinik, Heather Schimweg, my co-workers and employers at Walsh & Associates!) as well as countless other friends, family and neighbors! We couldn’t be more appreciative. Thank you! Many friends and family have urged us to start something like this for some time now, however the persistent “Absolutely Not!” from our Mom, has prohibited us in doing so. Well, we all go behind our parents backs from time to time, right? This is one of those times. Our family has never been one to accept help or handouts, but I think this is more than that. People ask everyday what they can do to help, and short of saying, “Find a cure for all the awful cancers in the world” we think this is the best way.
Through your generous donations, you will be giving our family the gift of time. Time to be together when it matters most. Relieving some of the financial burden on my parents, we feel, will allow our Dad to be less stressed and able to heal. Our entire lives both of my parents have worked tirelessly to provide our family everything we could ever need and want. Now it is time we try and do the same for them. Unfortunately, we cannot do it alone. After 37 years of marriage they have never been apart this long, they are still very much in love, and we hate to see them hurting in so many ways!
Please consider helping our family, no amount is too small, everything helps. Thank you so much for listening and I will continue to update you all on his progress!
With Love,
Tommie and Rachael
