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Jun 6, 2018 Latest post:
1 hour ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. Brad was diagnosed in March of 2018 with a very rare blood disorder called AL Amyloidosis. Only 7-8 people out of 1 million will be diagnosed with this condition every year. Our family has watched in frustration and bewilderment as Brad's health declined over the past 2 years. None of the doctors he visited could find anything significantly wrong with him. In this Brad is typical: most amyloid patients will see 4-5 doctors and specialists before their condition is diagnosed. The symptoms are very vague and could be caused by any number of health issues. On March 6th, a kidney biopsy finally revealed the disease and we were referred to the Mayo Clinic where some of the top hematologists working in this field reside. A bone marrow biopsy confirmed the diagnosis and the specific type of amyloid Brad is producing. An oral chemotherapy regimen was prescribed and Brad had his first round on Monday, April 23rd. Amyloidosis is not cancer, but it is a close cousin of Multiple Myeloma. It occurs when the body's bone marrow starts making a light-chain protein that does not "fold" properly. This amyloid protein is carried in the bloodstream and deposited in the organs. In some patients, amyloid will be deposited in certain organs more heavily than others. In Brad's case, we learned at The Mayo Clinic that his kidneys, liver and heart had been compromised. Because amyloid proteins don't "fold" normally, they cannot be filtered like other, normal proteins our body produces. They build up in the affected organs over time and wreak havoc. There is no "cure" for amyloidosis, but there is treatment. The goal of the chemotherapy is to try to get the bone marrow to make less amyloid or, in rare cases, stop altogether. If a patient is healthy enough, the "gold standard" for treatment is to then do a bone marrow/stem cell transplant with the hope that a permanent remission can be achieved. In Brad's case, the doctor at Mayo said that Brad was too weak to withstand a bone marrow transplant at this time. He hoped that after 16 rounds of oral chemo Brad's amyloid production would decrease, he would get stronger and then, perhaps, he could withstand a bone marrow transplant. But as each week of chemo passed in May, Brad deteriorated. The amyloid that has built up in his heart muscle has made it thicker and less elastic. This has caused him to go into early congestive heart failure. Brad's cardiologist, Dr. Jeff Sparling of Integris, referred to us to Dr. Doug Horstmanshoff at the Integris Heart Transplant Institute. There are only three transplant centers in the nation that will accept amyloid patients, and Integris is not one of them. After reviewing Brad's echocardiogram from Mayo, Dr. Horstmanshoff gave us some shocking news: "you don't have months to address this...you have weeks." Dr. Doug, as we call him, explained that Houston Methodist has one of the top heart transplant programs in the nation and they accept amyloid patients. He worked tirelessly to make the referral for us, and we arrived on Tuesday, May 29th. As I write this, we have been in Houston for exactly one week. And what a week it has been! Three weeks ago we thought this would be "the horrible summer of chemotherapy" and now it is going to be "the summer of getting a heart transplant. " Our lives have been turned upside down by one nasty little protein, but the doctors at Houston Methodist are our warriors and they are preparing Brad for battle. It is beyond impressive what they do down here and how they do it. For all of you who love and care about Brad and our family, we apprecte your support, prayers, and words of hope and encouragement. Thank you for visiting.