MD Anderson Week 4: Finding Answers

It seems as if each Tuesday gets exponentially bigger. A month ago, I was excited about starting a new clinical trial that may have been effective against the t315i mutation that has thrown my treatment plan into chaos. Two weeks ago, was the first appointment I’ve had since stopping the trial. I couldn’t see that well and the next day it was discovered that the pressure in my eyes was more than double what it should have been. Yesterday, we were scheduled to find out the results of my siblings and parents match testing for a bone marrow transplant. Each week, I’ve grown increasingly more thankful. This Tuesday was no exception.

We were scheduled to see Dr. Cortes, my oncologist, in the morning and Dr. Ciurea, my transplant doctor, in the afternoon. I had hoped that it would have been the other way around. I didn’t want to hear the news of my siblings matching or not matching until we had the opportunity to talk to Dr. Ciurea and see what it all meant. They’re both brilliant doctors, but each sees the big picture in their own related field. Bits of information from one about a procedure or protocol of the other is like having a sky dive instructor talk to you about scuba diving. I’ve learned that my imagination doesn’t serve me well when needed to fill the gaps of cancer treatment.

The last time I saw Dr. Cortes, two weeks ago, he walked into the room with four fellows. I was extremely tired so I was laying on the observation table with my eyes closed. When they walked in, I sat up and saw five guys with white coats. My vision cast a halo effect on everything so my first thought was that I was either in an episode of Scrubs or that MD Anderson looked a lot like heaven. This time, I have about eighty-five percent of my vision back so I was less worried.

“We’ve made a request to put you on Ponatinib,” said Dr. Cortes, after asking about my eyesight. Ponatinib is a drug trial has long been closed to new patients, as the pharmaceutical company Ariad seeks FDA approval to bring the drug to market. Ponatinib is a 3rd generation Leukemia drug that has shown relatively safe and effective responses for patients who’ve developed the mutation that I have. “We’re trying to get you in via compassionate care. We’ve submitted all the paperwork today, and I’ve personally emailed them to let them know that I’ll be expecting a response within the next couple of days,” he said, “Who knows if that will happen. They’re probably laughing at my email right now, but I just want to put a little pressure on them. They need to know that we have living, breathing patients who need to be treated.” That’s what I love about my doctor. He’s as influential as they come in regards to CML in America and the last thing I’d ever call him is arrogant. He really cares about people, and I’ve never heard anyone say his name without attaching some sort of praise to it. I’m really thankful.

As we further discussed finding out whether or not my family was a match for a transplant, Dr. Cortes searched the computer to see if he could find out any information. One of his fellows was sitting in the room next to him. “She said there was no match,” he silently said to Dr. Cortes. It wasn’t what we wanted to hear and it wasn’t how we wanted to hear it. Dr. Cortes excused himself from the room to search on a faster computer just down the hall.

I turned to Katie. A tear had made it to the bottom of her cheek. She had been anxious all week to learn the news. She really wanted to hear something positive. We both did. After a tumultuous few months, we just needed something good to happen. I put my arm around her and brought her as close to me as I possibly could. It was all that i could do to stay strong. The thought of her disappointment almost got to me. It was one thing to not have a match, it was something completely different to see my fiance’s hopes crushed. Nobody can ever really prepare you for that. It’s the most unforgiving emotion that we experience on this earth.

Dr. Cortes came back in and confirmed that there was no perfect match. He saw Katie’s tears, stopped talking, and asked her if she was okay. His compassion gave me renewed strength. “Hopefully, we’ll hear something soon with the Ponatinib. And who knows, you might respond really well and never even need the transplant,” he said. There’s the silver lining. There’s more to be thankful for.

Bone Marrow Transplant

The hours in between appointments were tough. Katie’s best friend Melinda, who happens to work at MD Anderson, met us in the cafeteria for lunch. We talked about the news, and I told them that it’s just more drama for my blog. Somehow, we began talking about how the drama could be turned into a movie, and how Cee-Lo would be cast to play me. We’ve watched the Voice lately and I’ve done this really bad Cee-Lo impression, “What up girrrrl, I want you on my team”. I guess I deserve it, but it felt so good to make them laugh.

During lunch, my mom called Katie to find out what we had heard. Katie couldn’t talk so she handed the phone to me. I told my mom the news. I could tell that she was trying to keep it together, but I could sense the disappointment in her voice. We had all hoped that it wouldn’t come down to finding a donor on the bone marrow registry. That’s always the last thingย  you have available.

This was our second appointment with Dr. Ciurea. The last time we had met with him, we received a lot of information so I knew we’d get the big picture that we were hoping to get. He came in and began talking about the HLA matching of my family right away. “We’ve examined the results of your family’s HLA testing,” he began, “Your parents are a half match and one of your siblings matched at 9 of the 10 locations. They are three good candidates for a transplant procedure.” He said that a perfect match with anybody on the registry is going to be difficult for me because, OF COURSE, I have one allele that is rather uncommon. I couldn’t help, but to smile at the irony. Go figure that I’d have an uncommon leukemia (for my age), with an uncommon mutation, and now I have an uncommon allele. I’m glad I didn’t know all of this when my self-esteem was developing.

The word “good” never sounded so great. In fact, “good” almost sounded “perfect”. “You said good candidates, right?” I confirmed. “Yes, we’ve had a lot of success with patients whose leukemia has changed from chronic to acute. In your case, there shouldn’t be any problems. You’re young, healthy, and don’t have any other conditions that would make a transplant complicated,” he said. Of course, the possibility of starting on Ponatinib might change the timeline of when we’d actually go through with this. If I’m unable to get into the closed trial then a transplant could happen in a matter of weeks.

This was all great news. Our day went from somber to joyful, from disheartened to optimistic. My levels of thankfulness continued to build. The bar has lowered immensely, but there’s time to build it back up. The main thing is that there’s time. That’s all we can ever ask for, right? When faced with heartaches of any nature, we want time. Yesterday, I was given time. And although it’s not guaranteed, I’ll celebrate it with thanksgiving, hope, and praise to a God that continually shows us that he hears the prayers of his children. I’m forever grateful.

I’ll expand more on this in a more deserving, separate, blog post, but let me just say that I mean this from the bottom of my heart; thank you. There will be a season when this will pass, one way or another, and I’ll never get to have another moment to tell you how much your thoughts, prayers, messages, comments, texts, etc. mean to me, Katie, and my family. It may turn out that, on the other side of this, I’ve been the lucky one all along. I truly believe that. Your encouragement along the way means the world.

19 Replies to “MD Anderson Week 4: Finding Answers”

  1. Whew…what a rollercoaster! A lot like our lives if you think about it. We have to enjoy the “highs” and endure the “lows”. God will bring us through. Love to you both.

  2. I’ve GOT to stop reading your blogs at work! It’s a tearfest every. single. time! Haha.. I keed. Seriously though… I am thankful for your friendship and your willingness and superb ability to share your story. You don’t realize how many hearts you’ve touched. I’ve shared your blog with coworkers and family and we are all praying for you Justin! God has a plan. ๐Ÿ™‚

    P.S. CeeLo is definitely the way to go, as long as he’s petting a white cat! Give my love to Katie and tell her to give you a big hug from me! xoxo

    1. Thank you so much Yesenia! When it’s all said and done, I’ll have a really great story to tell that I hope will bring more smiles than tears. Or maybe just tears of joy! Thanks for sharing!

  3. Good news! Katie passed along the info yesterday, and it was a huge relief. Your movie should be called Unique Allele: The Story of How One Allele Changed the Course of History.

    I’ll be played by Amy Adams

  4. You better be glad all our patients are checked in at work! I hate crying in front of people! But at least they’re tears of joy. I’m so happy to hear this wonderful news! Thank you for sharing. ๐Ÿ™‚
    You, Katie, and your family are always in my prayers.

    1. Thank you steph! That should be a rule from now on. No reading my blog at work. Or maybe I should start writing disclaimers. Or maybe I just need to receive some incredibly awesome news! Either way, thanks for reading!

  5. wow this thing(can i call it a thing) reads like a best seller book! We’ve never met, in fact I haven’t seen your dad since high school and find it ironic that we are both welders and travel the world doing it!at one time ,my family lived on 23rd street and I went to Carrigan Elementary School. Wish you the best, and pray that your doctors heal you. We know its only possible through the one and only Jesus Christ.

    1. Thank you for stopping by and taking the time to read my blog, Raymond! And thank you also for the prayers and encouragement. They mean a lot.

  6. Hello Justin, You don’t know me but I work with your mom. I just want to say how grateful I am for your words. I can see what a beautiful heart that you have inside. I doubt all your rarity is from a unique allel, but whatever it is… I wish the world had more of it. Thank you for sharing yourself with so many people. You are way to beautiful to not share. ๐Ÿ™‚ Continual prayers for you and love to your mom.

    1. Tobi, those are such sweet and uplifting words. Thank you so much for taking the time to share them with me. Your thoughtfulness made my day. Thank you.

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