Looking behind and forging ahead. Please help Brandon continue to fight leukemia!

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.

Update About Brandon’s Treatment (1/21/17)

In my last update, I shared that Brandon had been admitted to the hospital for an infection in his lower GI tract. After about two weeks in the hospital Brandon had improved enough to go home. I am happy to report that we have been home for a week and things have continued to improve! The infection seems to have cleared up almost completely and Brandon’s pain has improved considerably. We are so thankful that Brandon is now able to rest and recover in the comfort of our own home.

We have resumed our three-day a week outpatient schedule for blood work and blood transfusions, as needed. This was our first week back and we’ve been busy re-adjusting to outpatient life. Being back as an outpatient is exhausting, we spend about 30 hours a week at the hospital and most of it is spent hanging out in waiting rooms. This week has been especially hard on Brandon since he is still extremely exhausted from spending two weeks in the hospital. Brandon’s doctor says that it takes three days to recover from every day you spend in the hospital, and I think she’s right!

Yesterday we met with Brandon’s leukemia doctor to discuss his progress and the next steps of treatment. Brandon’s doctor was very encouraged by the results of his recent bone marrow biopsy and would like to continue forward with the same treatment regimen. He’s happy that Brandon’s leukemia is responding to treatment and that things are moving in the right direction. Brandon will be continuing with this treatment for the time being, but a lot of things are up in the air as we start looking to plan his second stem cell transplant.

As we’ve learned multiple times in the past, Brandon’s leukemia is very aggressive. Although Brandon went into his previous transplant in a form of remission, he had detectable residual leukemia cells in his bone marrow. Unfortunately, the conditioning chemotherapy and transplant were not able to completely wipe out the leukemia that remained, which led to his relapse 60 days later. We’ve learned from this experience that we need to do something different this time around to prevent Brandon from relapsing again.

Brandon’s leukemia and stem cell transplant doctors have been busy brainstorming a lot of possibilities. Currently, they are looking into different types of pre and post-transplant clinical trials and therapies, in addition to considering a haploidentical transplant. In Brandon’s previous transplant, the unrelated stem cell donor was a 10/10 match to Brandon’s tissue type. This is normally the preferred option, since a fully matched donor lowers the risk of graft-versus-host disease (GVHD), a complication where the donor’s cells attack the transplant recipient’s body. Unfortunately, this also means that sometimes the graft-versus-leukemia effect, where the donor’s cells kill diseased cells, is less potent because the donor’s cells are less able to identify the leukemia cells as foreign.

In a haploidentical transplant, the stem cell donor is only a half match to the recipient’s tissue type (5/10).  Haploidentical transplants were originally designed to give a viable transplant option to patients that were unable to identify a fully matched donor, since a patient’s immediate family members (parents and siblings) are often times haploidentical matches. Recently, however, there has been a lot of research studying the success of haploidentical transplant for patients with more aggressive forms of leukemia, and many of the studies have been very promising. For this reason, Brandon’s mother, father, and sister are currently being tested to see if they qualify as potential donors.

Right now, nothing is set in stone. We are just looking into all of our options for Brandon’s continued treatment and upcoming transplant. There are a lot of promising options on the table. We hope and pray that God leads Brandon’s doctors to the treatment that becomes a cure for this horrible disease. We are thankful to be in a place with so much hope, because we know how it feels to be told that you’ve come to the end of the road.

Brandon is incredibly strong and bravely continues to push himself every day. These last few weeks have been very difficult, but we’re still here and we’re still fighting! Thank you all for your love, prayers, kindness, and support. We’re taking this journey one day at a time and counting our daily blessings. I will continue to keep everyone updated as we continue with Brandon’s treatment.

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I love to see this smiley face!

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Our first weekend away from the hospital in over 3 weeks!

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Outpatient life… lots of waiting and sleeping…

Update About Brandon’s Treatment (1/10/17)

Last Tuesday Brandon was admitted to the hospital due to severe pain and a high fever. After a number of tests, it was determined that Brandon had an infection in his lower GI tract that was causing some severe inflammation.  Since then, it’s been a struggle to manage Brandon’s pain and treat the infection. It’s been a rollercoaster of a week, but I feel like things are finally moving in the right direction. The antibiotic regimen has been successfully treating the infection, and his pain is finally being better controlled with pain medication.

Last Friday Brandon had a bone marrow biopsy (his 18th!) to evaluate his leukemia after 2 months of treatment. I will share the results shortly, but I’d like to give you some background first. Prior to last Friday, Brandon’s previous biopsy was done at the end of September. This was just after his leukemia had relapsed post stem cell transplant. That biopsy showed 42% blast (cancer) cells in his bone marrow. Brandon did not start treatment for his relapsed leukemia until the middle of November, about a month and a half after the biopsy. Therefore, the blast count at the time of starting treatment was much higher than 42%. Just to give you an idea of how aggressive his leukemia is, in the past his bone marrow blasts have increased by more than 50% in just two weeks. So just imagine how much they increased during those 6 weeks!

I bet you’re wondering what the results are from last Friday’s biopsy…..

Drumroll please!!!

After two months of treatment, Brandon’s bone marrow is only 22% blasts! Woohoo! Can you hear my cheering?!

Brandon’s leukemia team is very encouraged by these results and have decided to proceed forward with another cycle of the same treatment. Last Friday, Brandon started another round of chemotherapy. We’re 5 days into chemotherapy and treatment is going well! Brandon is feeling better day-by-day and we’re finally discussing hospital discharge with the doctors. Over the next few days they will be transitioning Brandon off of his IV medications in preparation for going home. We’re hopeful that Brandon will be able to go home by next Monday at the latest.

We are so encouraged by the results of Brandon’s most recent biopsy and the success of his treatment so far. We feel that we are moving even closer to Brandon’s next stem cell transplant. Thank you all for your continued love and support. Your encouraging words and prayers strengthen us every day. I will continue to keep everyone updated with Brandon’s progress!

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You guys, I can’t get over his luscious hair and beard!

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New Year, New Hope; An Update About Brandon’s Treatment (01/01/2017)

I hope this post finds everyone warm and cozy after a beautiful holiday season.

Brandon and I had an amazing Christmas with our family. Despite going through continuous treatment, Brandon was feeling well and was able to enjoy the holidays. I am so thankful that we made it through December without any unexpected hospital stays or complications. Spending Christmas at home with those we love was the greatest gift that we could have ever asked for.

Brandon has almost finished his second cycle of this new treatment! Since Brandon started this treatment almost 2 months ago, there has been a huge decline in the number of blast (leukemia) cells circulating in his blood. When he started, his white blood cells were about 90% leukemia cells. Just this past week, his white blood cells were down to about 15% leukemia cells! These results have been especially promising given how quickly Brandon’s leukemia progresses without proper treatment.

Since the leukemia cells are still present in his blood we know that he is not yet in remission. However, the steady decrease in circulating leukemia cells is a great sign that this treatment is moving things in the right direction! On Wednesday Brandon will be having a bone marrow biopsy to evaluate this treatment’s effectiveness at a deeper level. They will be looking to see the percentage of leukemic stem cells present in his bone marrow and which genetic mutations they carry. This will give the doctors a clear picture of how Brandon’s body is responding to this treatment. This will also allow them to plan for his continued treatment as we move toward a second stem cell transplant.

This coming biopsy will be Brandon’s 18th. The stress and fear that surrounds these results seems to only worsen over time. Please keep us in your thoughts and prayers as we anxiously await this news. We are hoping and praying for positive results that will point us in the right direction. We will be meeting with Brandon’s leukemia doctor on Friday to discuss the next steps.

Overall, Brandon is doing well on this treatment regimen. Aside from the leukemia, he’s in pretty great health! The skin infection that he acquired a few months ago is almost completely gone. He was finally able to transition from IV to oral antibiotics after about a month and a half and things seem to be continuing to improve. He still has an extremely compromised immune system, so we are on high alert for potential infections. This means a lot of preventative medications, hand washing, temperature taking, and mask wearing. We are thankful that Brandon has remained relatively healthy despite his increased risk.

Brandon’s bone marrow is still unable to make enough of his own blood cells so he has continued to receive multiple blood transfusions throughout the week. This keeps us in the hospital about 30 hours a week between doctors appointments, blood work, and transfusions. We are thankful, however, that Brandon has remained on an outpatient basis since starting this treatment in November.

Just a few weeks ago, Brandon and I shared our story to shine a light on the importance of blood donation. We were interviewed by KPRC2 News to help motivate people to become regular blood donors. This time of year blood banks run critically low as people are consumed with their holiday plans. Blood banks get close to running out of blood and sometimes hospitals have to turn people away that need transfusions! This year, please consider making a New Years resolution to become a regular blood donor. You can make a difference and save lives! You can view the news story here.

As we move into 2017, Brandon and I have done a lot of reflecting about our journey over the last 18 months. We spent 2016 working towards one goal: beating leukemia. It’s been a long road with countless victories and accomplishments, in addition to many disappointments and setbacks. Although 2016 was difficult to depths I could never describe, it brought us closer and strengthened our love, faith, and commitment to one another. We learned the true meaning of love and now have a greater appreciation for the gift of life. This year, we bring with us a fire and determination to beat leukemia once and for all. We are so hopeful for what this New Year will bring and the miracles and victories that await us.

Thank you all for your continued love and support. I will continue to keep everyone up to date with our progress towards a life without leukemia. I can feel it, 2017 is going to be the year!

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A Christmas moose in his natural habitat =P

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Brandon’s interview with Phil Archer @ KPRC2 News

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Cozy on Christmas

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What a special Christmas

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Some of our most memorable moments of 2016