I feel like so much has happened since my last update on the 1st of March that I don’t even know where to start. It’s been a whirlwind since we checked into the ER Sunday due to Brandon’s high temperature.
The doctors originally thought that he had an early stage of pneumonia so he was admitted to the hospital Sunday night. However, Monday night Brandon had a CT scan of his chest, which disproved the original diagnosis of pneumonia. We were incredibly thankful to learn that Brandon did not have pneumonia but were left puzzled as to where the infection was hiding. In the process of trying to find the source of the infection they have found that Brandon has a collapsed lower lobe in his left lung, some fluid surrounding his lungs, and thrush (a minor fungal infection) in his mouth and throat. The doctors are not too concerned with their findings at the moment, but he continues to be watched closely.
Over the last 72 hours the fevers have continued with Brandon spiking multiple fevers above 103 degrees Fahrenheit (39.4 degrees Celsius) throughout the day. At this point infectious disease has been brought on board to run more tests to identify the source of infection. The good news is that his condition is not getting worse, but it’s not necessarily getting better either. He’s being treated with three broad-spectrum IV antibiotics, an antifungal medication, and an antiviral medication. So far all of the infectious disease tests have come back negative.
This past week has turned into the perfect storm of unfortunate events. Last Thursday Brandon stopped his daily leukemia medication that he has been taking since November in order to complete a wash out period prior to enrolling in a new leukemia clinical trial. Since stopping that medication, Brandon’s leukemia progression has accelerated. Obviously that medication was keeping things at bay and since stopping it, his leukemia has been able to run rampant. His white blood cell count has been skyrocketing and he’s had to take increasing doses of an oral chemo to control his counts.
Brandon’s rapid leukemia progression has been causing him an immense amount of pain. The leukemia cells in his bone marrow have begun to multiply so rapidly that his marrow is now overcrowded with cancer cells, causing severe bone and joint pain. It’s been very difficult to control his pain over the last couple of days that he has been in the hospital. In addition to his leukemia pain, the consistent fevers and lack of sleep have made him incredibly uncomfortable. There’s not even the words to explain how much pain and discomfort that he has been in. We’ve had some better moments today so I’m really hoping that things are starting to turn around!
In other good news, Brandon was accepted and enrolled into the new clinical trial yesterday. We are so thankful that he was able to take his first dose of the investigational drug this afternoon! This new drug is the first of its kind to be developed to treat AML patients with resistance to FLT3 inhibitors, which is the type of treatment that worked well for Brandon early on. The Leukemia Department at MD Anderson is very excited about this new drug and hoping, as are we, that it works wonders. We have been praying for God to lead us and our team at MD Anderson to the best possible treatment, and we are so hopeful that this is the miracle drug that we have been waiting for.
It’s been a very trying first few days at the hospital but we’re hoping that things start to smooth out. We pray that Brandon’s doctors are able to find and treat the source of his fevers quickly so that part of his discomfort is eased. We also pray that this new leukemia drug begins to work quickly so that the leukemia is wiped out and Brandon’s pain lessens. He’s got so much strength and courage and I’m so proud of how hard he continues to fight every single day. His body, mind, and spirit have been through so much but he continues to be strong, determined, and hopeful. I am so proud to be his wife and walk this journey by his side. Brandon continues to fight for our life and love every day and I couldn’t be more proud of him.
I have no doubt that God has big plans for Brandon’s life. Over the last 19 months of our journey I have watched Brandon strengthen and encourage other patients and their families, both by his words and by the way in which he lives. His infectious smile and laugh have brightened the days of so many people. He has inspired many with his will to fight and determination to never give up. He’s signed up for every research study that he’s been approached about in hopes that his additional blood and bone marrow samples will be used for life-saving and innovative research that will make a difference. His participation in five clinical trials will undoubtedly impact the lives of many as these drugs come to market and become available to millions of people. I am so proud that he has taken it upon himself to use this very difficult part of our lives to make a positive impact for others.
Please continue to keep us in your thoughts and prayers as we start this next part of our journey. We are so thankful for everyone’s love, kindness, and support. I will be sure to keep everyone updated with Brandon’s progress.