Hello everyone! I just want to start out by saying that Brandon and I, along with our whole family, are so thankful and appreciative for your continued support. We wouldn’t be here today without your kindness and generosity. As we approach our one-year anniversary at MD Anderson, I am reminded of the journey that brought us here.
Brandon was diagnosed with acute myeloid leukemia (AML) in August of 2015, and completed two rounds of chemotherapy at Vancouver General Hospital in British Columbia, Canada. We found out days before our Wedding in October 2015, that Brandon’s second round of chemo had failed to put Brandon in remission. In fact, it wasn’t even close; over 50% of the cells in Brandon’s bone marrow were cancerous, and to say we were devastated is an understatement. At that time, after only a month and a half of treatment, we were told that there were no additional approved treatments for Brandon’s leukemia.
It was around that same time that we learned that Brandon had a genetic mutation that made his leukemia resistant to chemotherapy and very difficult to treat. We learned that there was a phase III clinical trial being offered at Vancouver General Hospital for a targeted therapy that would treat Brandon’s leukemia by targeting his genetic mutation. We were elated when Brandon qualified for the trial and was randomized to be one of the 66% of people to receive the drug. Brandon started this trial at the end of October, and his subsequent bone marrow biopsies in November and December showed that the treatment was working!
At the beginning of January 2016, we were hopeful as Brandon was scheduled in February for his stem cell transplant. After 4 and a half months of treatment and prayers, everything was looking up and we started to envision our lives without leukemia. Then, in an instant, our lives were turned upside down. We were told the one thing we never wanted to hear. The treatment had stopped working, Brandon’s leukemia had made a strong comeback, his stem cell transplant was cancelled, and he was going to be removed from the clinical trial. There was nothing else they could do other than offer Brandon palliative care to slow the disease as it took over Brandon’s body. Brandon’s doctor told us there was nothing left, in Canada or elsewhere, that could treat Brandon’s leukemia. She told us that we had come to the end of the road and that we should accept it and give up. She told us that Brandon was going to die. I can’t even begin to tell you what it’s like to hear those words.
Brandon and I had decided long before that we would continue to fight no matter what, and that we would never give up. Despite what Brandon’s doctor said, we knew it was not the end of the road. Growing up in Texas, I knew of MD Anderson Cancer Center, a place where miracles happen. In fact, I had already been in contact with a Doctor at MD Anderson months before to inquire about their clinical trials. I knew that there was hope for Brandon at MD Anderson, so we quickly made a plan to get Brandon there as soon as possible. There was a lot to be done, the most daunting of which was coming up with the $37,000 USD to pay for Brandon’s consultation. We created a GoFundMe campaign and were astounded at what happened next. Brandon’s story was shared all over Vancouver and within a week we had raised the money to come to MD Anderson. It was absolutely amazing to see all of the love, kindness, prayers and support we received from our friends, family, and community. Thanks to your support, we were able to travel to MD Anderson in February of 2016.
When we arrived at MD Anderson there was so much hope! We heard amazing stories from other patients who ‘beat the odds.’ Brandon’s leukemia team was so supportive and optimistic and what they told us was music to our ears. They said that we were not at the end of the road and there was so much more that could be done! Thanks to the overwhelming support of so many people, Brandon has continued to fight this disease for the last year at MD Anderson. We are so incredibly thankful for all of the GoFundMe donations and amazing fundraisers put on by our friends and family back home in British Columbia. These funds, along with generous help from our family, have made it possible for us to stay at MD Anderson and for Brandon to continue treatment. It has been a l-o-n-g and expensive journey but one full of life, joy, laughs, pain, tears, prayers, and fears. Brandon would not be here without your love and support, and for that we are incredibly thankful. Thank you, thank you, thank you! We could never say those words enough. You continue to give us hope.
Here’s a little recap of what we have accomplished over the last year at MD Anderson:
- Participated in two more leukemia clinical trials
- Achieved remission in May 2016 (and proved Brandon’s doctor from Vancouver wrong!)
- Brandon had a stem cell transplant on July 12, 2016
- Celebrated two months of post transplant remission with no evidence of disease
- Unfortunately, relapsed 60 days post-transplant
- Started a new treatment (IV chemotherapy and a new to market oral targeted therapy) in November 2016
- After two cycles of treatment, we learned in January 2017 that the new treatment is working!
We are now continuing with the same treatment regimen, which consists of IV chemotherapy and an oral targeted therapy called Venclexta. We have started planning Brandon’s second stem cell transplant, which is planned to take place once Brandon gets back in remission, which hopefully isn’t too far away! Brandon’s Stem Cell Transplant Team believes that he is an ideal candidate for a second transplant due to his age, overall health, and amazing will power and attitude to never give up! Brandon’s Leukemia and Stem Cell Transplant Doctors are planning a different approach to his second transplant, which will hopefully lead to a long-term remission and cure for this disease! We know all too well that sometimes you have to fight a battle more than once to win the war. This war is one that takes much perseverance and financial resources, and it can’t be fought without either of these.
I am very excited to share that Brandon is officially a permanent resident of the United States of America and now has health insurance! Insurance allows Brandon to stay at MD Anderson for his continued treatment and second stem cell transplant. While this insurance removes a huge financial burden, we still need your help because there are expensive treatments and drugs that are not covered. At this point in our journey, there are no standard of care treatments available for Brandon. The only options that are left, are trials and unconventional treatments like the one he is currently on. Unfortunately, insurance can pick and choose what they want to pay when on this road less traveled.
One of our biggest struggles right now is that our insurance has refused to cover Brandon’s targeted chemotherapy medication, Venclexta, which is the main component of his current treatment regimen. As I have shared before, Venclexta is an FDA approved medication for chronic lymphocytic leukemia, or CLL. Venclexta is currently going through clinical trials for other types of cancer including acute myeloid leukemia (AML), which is the form of leukemia that Brandon has been battling since 2015. Unfortunately, Brandon did not qualify for the clinical trial for this drug because of the strict eligibility criteria that disqualified patients that had previously undergone a stem cell transplant. Had he had qualified for the clinical trial, we would have been given the medication for free by the drug company under this trial.
After Brandon’s post-transplant relapse, we looked into a lot of treatment options. Despite not qualifying for the trial, Brandon’s doctor felt that this treatment had the best chance of getting Brandon back into remission. Since November we have paid almost $50,000 USD for Brandon’s Venclexta, and ONE month’s supply at his current dose is about $22,300 USD. His leukemia has been notoriously difficult to treat, and we don’t want to give up something that’s working! We need your help to keep Brandon on this treatment so that he can get back into remission and qualify for a second stem cell transplant. Moving forward, our fundraising efforts will be to used pay for Brandon’s medications, our health insurance premium, insurance copays, and previous medical bills.
We are so incredibly thankful for the thousands of people that have made it possible for us to be here today. We have had an army of support behind us the whole way, and it means so much to us and our family. We are strengthened every day by your prayers and kind words. Thank you all so much for your part in saving Brandon’s life. He is such a light in my life and to the world, and he continues to be an amazing example of perseverance, bravery, unwavering faith, and strength.
While we do not know what lies ahead, we have faith and trust that God is leading the way. We have the upmost trust for our amazing care team at MD Anderson and pray that God is leading them to the best possible circumstances for Brandon. Thank you, again, all for your continued support throughout this journey. We are so blessed to be in a place with so much hope, and we will continue to fight for a cure and for a life without leukemia with your help.
Then… January 2016
And Now… January 2017