Reflections about 2017

2017… Who knew four little numbers could bring about so many mixed emotions.

As I quickly approach the start of a new year, I can’t help but to think back and reflect on what a life altering year it’s been. When I look back at 2017, I see two completely separate lives joined by one horribly painful event. The first 185 days of 2017 were spent loving, supporting, and fighting for my husband and best friend as he continued to fight for his life. There were countless doctor’s appointments, tests, blood transfusions, chemo treatments, hospitals stays, and worst of all… too many conversations with doctors and loved ones about how my husband was going to die. In March I was told to quickly prepare to lose him, and then again in May, but he came back fighting harder every time. Despite how bleak it looked, we hoped for a miracle that would allow us to grow old and grey together. In late June I had the most painful conversation of my life as Brandon told me that he was ready to stop treatment and go home; and on July 4th, I said the most heartbreaking goodbye in the moments before his last breath. When I walked out of the hospital that night without him by my side, my life was forever changed.

The last 180 days of 2017 have been spent trying to navigate and adapt to life in a world that I haven’t lived in for a very long time, a world without emergency ER visits, lab reports, clinical trials, medication schedules, and a world without Brandon. Everything that was normal and constant in my life was completely ripped away and replaced with an existence that I didn’t recognize or understand. I spent the first weeks following his death wandering around looking for something to do or someone to take care of, because I had completely forgotten what it was like to do anything else. The thought of continuing forward with my life was terrifying and paralyzing because I couldn’t see anything other than the life I had always envisioned without my best friend by my side. But every day I heard a little voice in the back of my head, Brandon’s voice, telling me that I had to keep going and that I had to keep living my life.

In the beginning, it was all for him, my heart just wasn’t in it. I channeled my inability to take care of him into a drive to keep the last promises that I had made. Little by little, I pushed myself to get out there and to do things that made me feel like I was alive again. It felt so good to laugh, to feel the sun on my face, to be challenged physically, and to reconnect with people. I took a huge leap of faith when I left to travel alone for 2 months, and when I came home, I was nothing like the girl that had left. Through so many incredible places and experiences, I had reignited my spark and I had found my joy for living. Finally, the world started to look beautiful again. For the first time in a while, I started to feel hopeful about my future and excited to simply be alive. I realized that although this wasn’t the life I had wanted or prayed for, it could still be embraced and enjoyed, and it could still be beautiful.

Brandon gave me the most beautiful gift during those painful talks about how my life would be after he was gone.  When I would cry and express that I didn’t think I could be strong enough to go on, he always smiled, encouraged me, and told me that someday I would be okay. He had the most gentle words of love and support about my life moving forward. He made it very clear that he wanted me to keep living and he never let these conversations end until I had promised to do the same. His words have resounded in my head for the last 180 days of 2017, helping me to keep going, through every moment that I just wanted to give up. And I have to keep going, because now I’m not just living for myself, I’m living for him too.

So as I sit here looking into 2018, life has never been more uncertain… but it’s never been more beautiful either. This year I’m viewing life through a whole different lens as I continue to discover who I am and where I want to go. I have hope and excitement for new people, places, and experiences as I strive to truly live this year more fully and deeply than any year before. 2018 is a year for living life to the fullest, and I know that little voice in my head will be cheering me on every step of the way.

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Thank You All

Thank you all for your incredible love and support since Brandon‘s passing. This has been an incredibly difficult week for our family but we have been so comforted by everyone’s kindness. Yesterday our family gathered and said our goodbyes to Brandon before his cremation. We all miss him more than words can describe but are comforted in knowing that he is finally at peace. We are doing our best to focus on the blessings and have felt so much joy in sharing laughs and memories about our precious Brandon. We have also felt heartened to hear so many amazing stories about how Brandon’s journey has impacted so many lives.
 
A lot of people have reached out requesting details about Brandon’s celebration of life. We are still trying to confirm details, however, we have decided on the date of Saturday July 22nd. Please mark that date off on your calendar if you would like to attend. I will be sure to let everyone know as soon as we have confirmed times and more details.
 
I will be working on a slideshow for Brandon’s celebration of life and would love any photos that anyone can share. Please feel free to email/message me photos or you can also drop them off at Karen’s home. It would be wonderful to gather a collection of photos that truly honor and represent the way Brandon lived his life – full of laughter and love.
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Rest In Peace My Sweet Brandon

Last night at 8:05 my sweet Brandon was called home. Yesterday was incredibly difficult for our family, however, I am so thankful that we all had the time to tell him how much he is loved and how deeply he has touched our lives. He was surrounded with the love and support of family as he passed peacefully and started on his journey to heaven. I miss him more than words can describe but I am so happy that he is finally free of the pain and suffering caused by this horrible disease. It has been a long emotional journey but I truly believe that Brandon was finally at peace and ready to pass on.

There could never be enough words to describe my deep and unending love for my beautiful husband, Brandon. He is truly the most beautiful person with such a beaming smile and infectious laugh. His personality can light up a room within moments and I have yet to meet someone that doesn’t adore him. He loves deeper and bigger than anyone I have ever known and has a beautiful way of making others feel so incredibly special and loved. His goofy and spontaneous sense of humor is unmatched and he has the beautiful gift of making people smile wherever he goes. When we met it didn’t take me long to realize that I had found someone incredibly special and one of a kind. In our time together Brandon has taught me so much; he’s shown me how to be brave and strong, how to love deeper and harder, to see the beauty in everyone and everything, and most importantly to never give up no matter what life throws my way.

Though our time together was short, we truly squeezed in as much joy and laughter as we possibly could. We loved more in our 3 and a half years than some people do in a lifetime. I feel so incredibly blessed that I was able to be a part of his life here on earth and I feel honored that I was chosen to be his best friend, soulmate, and wife. I have no doubt that our time together will be the most special years of my life and I’m thankful for every single moment that we shared together. Our love is everlasting and while we are no longer together in person, he will always be a huge part of my life. He will always be in my heart and his spirit will live on through my thoughts, words, and actions. I love him endlessly and that will never ever change. It brings me so much joy to know that I will see him again one day and that we will be able to pick up right where we left off. Until that time, I know that I will have the best guardian angel in heaven. I have no doubt that he will be watching over me every moment until we meet again.

I couldn’t be more proud of Brandon’s bravery and courage over the last two years of our lives. He tackled leukemia head on and remained positive and hopeful throughout every single disappointment and set back that was thrown our way. He fought through so much adversity and his journey has inspired so many. He overcame insurmountable odds and obstacles that astounded every single person that watched him fight this uphill battle. He knew the odds were against him but he never let that change his positive outlook and attitude. He wanted something positive to come from his struggle and never hesitated to agree to additional research studies that wanted extra tissue samples for leukemia research down the road. To him it was all worth it even if he could only save one life. I have no doubt in my mind that all of the clinical trials and research studies that he participated in will lead to new treatments and more lives saved. And despite everything that he was going through, he never stopped caring about everyone else. He had all the time in the world to share his story and spent a lot of time encouraging and inspiring other patients and their families. He became well known in the leukemia community at Vancouver General Hospital and at MD Anderson and inspired patients and their families, nurses, hospital staff, and doctors alike. He fought bravely during this long and strenuous journey and he has WON this battle against this horrible disease. Brandon beat cancer by how he lived, why he lived, and the manner in which he lived. I think it is safe to say he has more than earned his super hero cape and I have no doubt that he’s wearing it for a little extra Brandon flare with his new angel wings up in heaven.

Brandon and I are incredibly thankful for all the incredible support that we have received from all around the world during our journey. Everyone’s love gave us so much strength and courage to continue our fight. Thank you endlessly to everyone that made it possible for Brandon to travel to MD Anderson for further treatment; you gave him an extremely precious extra year and a half of life. Brandon and I greatly cherished that time and truly made the most of the short time that we had. I am so thankful that we were able to bring Brandon home even though it was just for such a short time. The moments he had here before his passing were so special and so powerful. He was able to witness an amazing welcome home committee full of his amazing friends and family, to meet and love on his niece and nephew, share smiles and laughs with the people he loves, and just relish in the beauty of being back home in BC, a place that he loved and missed so much. I will never forget the moment Sunday morning where he just sat on the couch at home with the sliding glass door open and a perfect view of the outside. We sat and cried and talked about how beautiful it was to hear the birds and the wind in the trees, smell the ocean, and to breathe that crisp cool BC air. He was so happy and so at peace because he had made it home.

Brandon’s story is incredibly powerful and no words could ever do it justice. I know that there are so many people that love him and so many lives that he has touched in his 26 years. If the years of life were measured in love, he would have far surpassed the age of 26.

I will be sure to share details about Brandon’s service and celebration of life once we have more details. Thank you all for the incredible love and support during this time. It brings me so much peace and joy to hear how Brandon’s life touched the lives of so many.

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The Update That I Never Wanted To Write (6/29/17)

I am so sorry that it has been over 3 months since I officially updated everyone about Brandon. The last few months of our journey have been such an emotional rollercoaster and I have been unable to put into words a lot of what we have been experiencing.

Shortly after my last update our world was turned upside down as Brandon went into respiratory failure and was placed on a ventilator in the ICU. At that time, the doctors didn’t know if he would ever breathe again on his own. Two and a half days later, after a lot of tears and even more prayers, he amazed everyone when he took his first breaths without life support. Shortly thereafter, he faced a life threatening heart complication that led to a drain being placed in his chest to remove over a liter of fluid that was compressing his heart. Since our time leading up to the ICU, Brandon has been fighting incredibly hard. In the last few months we have been in and out of the hospital more times than I can count and he has been through multiple rounds of treatment to try and get back into remission. The last 3 months have been unexplainably difficult and it has taken a huge toll on Brandon, myself, and our family. Unfortunately, despite everything we have done, the leukemia has continued to progress.

My heart is broken and I don’t even know where to begin. This is the post that I never ever wanted to write. Over the last few weeks Brandon’s leukemia has really begun to progress at a very quick rate. Unfortunately at this point in his illness chemotherapy is no longer working to control his leukemia. Chemotherapy that was holding things for a month are now barely holding things for the matter of a few days. It has been very difficult to come to the understanding and accept that there are no viable options and that his illness has become terminal.

At this point, Brandon has made the decision that he wants to focus on quality of life rather than quantity. This means that we will be traveling back to Brandon’s home in White Rock, BC, Canada very soon so that he can spend time with friends and family, meet his newly born niece and nephew, and be where he feels at peace. We plan on making the very most of the time that we have left together and with our loved ones.

Thank you all for your amazing support through the last two years of our lives. It has been an incredible journey and we have truly come so far. Without the love and support of so many, we would not have had the opportunity to come to MD Anderson for further treatment and therefore, would not have had the last very precious year and a half to spend together. Thank you from the bottom of our hearts to everyone that has helped us get so far.

I want to be clear that despite the outcome this is not defeat for Brandon or our family. Brandon has beaten cancer by how he lives, why he lives, and the manner in which he lives. I am so proud of my brave and courageous husband for fighting so bravely throughout our journey. He has touched so many lives and inspired so many people, including me.

Please keep Brandon and myself, along with all of our close friends and family in your prayers as we begin this next part of our journey. It’s very important to Brandon that he spends his remaining time in peace and joy surrounded by the ones he loves. We are trying our best to make this experience a reflection of our family’s positivity and love and request that everyone share in our outlook. We plan to be home within the next 48 hours and I will be sure to let everyone know when we arrive.

Thank you all again for your love and support.

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Brandon’s time in the ICU

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Brandon’s very special 26th birthday (4/23/17)

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Love beats cancer, always

Update About Brandon’s Treatment (3/15/17)

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.

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First dose of the new study drug!

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Clinical trial screening (and naps)

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This picture always brightens my day =)

 

Update About Brandon’s Treatment (3/1/17)

Hey everyone. I know it’s been some time since I did a formal update about Brandon’s treatment so I wanted to take some time to share where we’re at.

Recently, Brandon’s leukemia has started to show some signs of resistance to his current treatment regimen. Currently his condition is stable but it appears that his leukemia is moving in the wrong direction. We always knew that this was a potential outcome if Brandon’s leukemia did not go into remission quickly enough. While this current regimen did not get him into remission, it has well controlled his aggressive leukemia since last November and we are extremely thankful. For the last few weeks Brandon’s Leukemia Team has been looking into options for Brandon’s continued treatment.

Since Brandon is now more than 7 months post transplant, he has become eligible for more clinical trials than he was in September when he first relapsed. Brandon’s Leukemia Team has begun looking into the latest and most promising clinical trials in hopes that Brandon can be placed onto a treatment better suited to treat his type of leukemia. This week they identified a potential clinical trial and have begun planning for Brandon’s enrollment. During the coming weeks they will be transitioning Brandon off his current treatment regimen so that he will be eligible to start the new clinical trial once all of the current leukemia treatment drugs are out of his system. The big plan is still to get Brandon into remission and move forward with a second (haploidentical) bone marrow transplant.

Please keep us in your thoughts and prayers as we transition to this next part of our journey. This will be Brandon’s fifth clinical trial and although we are now familiar with the process, it’s still uncharted territory with each new trial. We continue to hope and pray that God is leading Brandon’s doctors to the best possible treatment for his body. We have the upmost trust and faith in our team at MD Anderson knowing that this is the place for the latest and greatest in cancer research and drug development. This is the place where miracles happen and we pray that our miracle is right around the corner!

Overall, Brandon has been doing well. All of his doctors and nurses are impressed with how well he’s doing given all that he’s been through since his diagnosis. Managing the symptoms of his leukemia is a constant struggle, but we try our hardest to make the best of it. He’s continuing to push himself and fight against this disease every single day. His bravery and strength are so inspirational, and we’re determined to keep fighting and moving forward. As we have always said, we’ll never give up! We’ve been given some sour lemons, but we’re working to make the best darn lemonade that we possibly can!

Thank you all for your continuous love, encouragement, kindness, and support. We are so blessed to have an army of people rooting us on every step of the way. I will continue to keep everyone updated with plans for Brandon’s treatment.

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Update About Brandon’s Treatment (2/6/17)

Happy Monday everyone!

We met with Brandon’s Leukemia Team on Friday to discuss the results from his most recent bone marrow biopsy (on 2/2) and his treatment moving forward. I am happy to announce that after 3 months of the current treatment regimen, his bone marrow only consists of 20% blast (cancer) cells! Last month, his biopsy showed that his bone marrow had 22% blast cells. Although the change has been small, it’s movement in the right direction and we are ecstatic about that!

Going into this treatment, we knew it would take time to see the full results since this regimen is a relatively mild treatment. Brandon’s doctor is very happy with the positive changes over the last 3 months. Prior to starting this treatment, almost all of Brandon’s circulating white blood cells were leukemia cells. Furthermore, he had to have multiple doses of emergency chemotherapy to keep his white blood cell count from becoming dangerously high. Today, his white blood cell count is well within the normal limits and the leukemia cells make up a small fraction of his white blood cell count. We are incredibly thankful that Brandon’s treatment is continuing to move in the right direction!

Brandon will be starting his fourth cycle of treatment starting this Wednesday. With another cycle comes another 7 days of chemotherapy and the continuance of his oral targeted therapy medication. This oral targeted therapy medication is currently costing us $22,300 USD per month at Brandon’s current dosage. We need your help so that Brandon can continue with this treatment so that he can get back into remission and qualify for a second stem cell transplant. Things are moving in the right direction and we do not want to give up on something that has been so successful.

Last Friday we also had a meeting with Brandon’s Stem Cell Doctor. Since Brandon’s relapse, he has continued to follow Brandon’s case closely. Last month we learned that Brandon’s doctor was considering a haploidentical transplant for the second transplant. In a haploidentical transplant, the stem cell donor is only a half match to the recipient’s tissue type (5/10).  Recently, 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. I am very happy to announce that Brandon has THREE confirmed possible haploidentical donors; his sister, mother, and father! There are many factors that come into play when determining the best donor, but all three of them are now eligible donors! We are excited that this new plan will allow Brandon to have his second transplant immediately after achieving remission.

Thank you all for your continued love and support. We are so blessed to have such an amazing support system throughout this journey. I will be sure to keep everyone updated as Brandon continues to move through treatment.

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Orange you glad to see me? =P 

 

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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