Follow The Yellow Brick Road

No time for creative introductions, I’m just going to get right to it. Theo’s MRD is ZERO. That’s right, Theo has NO leukemia cells in his body! Now, go grab that fancy bottle you’ve been saving for a special occasion and toast! (Thanks for the champagne, Mom!) Needless to say we are beyond happy, thrilled, overjoyed to receive this news. We know this is not the end – not even close. It does not mean he is cured, yet… but it is a huge victory. It means that Theo is responding very well to treatment and will not likely need a bone marrow transplant in his future. It means that his chances of being cured are even greater. It means that Theo’s treatment moving forward will not be as intense. It means that Theo is indeed a super hero… duh. So what now?

Here is the simple answer: more chemotherapy. Satisfied with that answer? Me neither. First, some things to keep in mind when talking about Theo’s treatment. Theo has a RARE form of leukemia, Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL). Treatment standards are different and overall more intense than the other more common types of leukemia. He may be in the “standard risk” arm but his treatment will always be considered “high risk” when compared to other types of leukemia. It is also why he has to take Imatinib, a chemotherapy drug (the one we used to call “water medicine”) every day for the remainder of treatment (three plus years). Now, for those of you looking for a more thorough explanation… bear with me.

When in doubt, refer to a flow chart. This chart shows the phases that Theo has already completed and the phases that are to come. The MRD came back less the 0.05%, which means he goes to the “standard risk” arm of treatment. Within that arm, there is Arm A and Arm B. Great, another fork in the road. “Now which way do we go?” Asks Dorothy. Luckily we don’t need to depend on a scarecrow’s advice to figure out which direction we are going. We got our answer from a clinical study. Let me tell you why. When this all started, when Theo was first admitted to the ICU, we met with a very large team of specialists assigned to Theo’s case: doctors, researchers, fellows, nurses, you name it. Again, it was all such a blur at the time I rarely knew who was who or what they were talking about. We were told that treatment planning heavily relies on results from clinical studies. In other words, experimental studies are needed to help figure out the best way to treat patients with leukemia. We were asked to participate in a clinical study and we said YES. We believe that if we can help doctors and researchers find a better way to treat leukemia then we should do it. It plays a huge roll in the advancement of medicine. It is why Theo can be treated so effectively today and eventually cured. It is why there is a drug, Imatinib, that works to kill the Philadelphia chromosome… because 15 years ago, it did’t exist. So, back to the flow chart. The fork represents the clinical study. The purpose of the clinical study is to find out if extra chemotherapy is needed. Is the addition of the Imatinib drug enough to kill the Philadephia chromosome-positive leukemia cells? OR is a higher intensity chemotherapy regimen needed as well? Arm A is the standard treatment: higher intense chemotherpay with Imatinib. Arm B is the experimental arm: less intense chemotherapy with Imatinib. Theo was assigned to Arm A. Now can you see why I love this blog? There is no way I could explain this every time I was asked, “What’s next?”

Buckle your seat belts everyone. Arm A starts today in full force! We have packed our bags and are checking into Hotel Children’s for six days. Consolidation #1 here we come. This week marks the first week out of a minimum 30 weeks that represent Arm A. That means we have roughly eight or more glorious months until we make it to the maintenance phase. Trust me, I would love to tell you all about what is to come over the next 30 weeks, but now is not the time. Patience my friends, I have lots of charts to share! Mmmmwwaaaaah ha ha haaaaa! (evil laugh). All of that to come (hopefully) soon. For now we sing The Sound Of Music “so long, farewell” to the journey behind us and shout Spider-man’s warning, “watch out, coming through!” to the journey ahead. We cannot control this journey that was chosen for us, but we can control the energy we feed it. Yes, there will be lions and tigers and bears, oh my! But we have strength, love, courage… and this beautiful smiling face to always remind us to focus on the beauty and good in life.

“A heart is not judged by how much you love; but by how much you are loved by others.” -The Wizard of Oz

Published by kavila38

The mother of the beautiful, smart, best rhymer of all timer boy with leukemia hoping to keep friends and family informed of my son's progress through treatment while also expressing my feelings and making poetry

2 thoughts on “Follow The Yellow Brick Road

  1. “A heart is not judged by how much you love; but by how much you are loved by others.” -The Wizard of Oz
    And, we love you all beyond compare! You are our heroes, with Theo leading the way. The journey is full of paths, and choices, and always a new adventure. We’re loving following this adventure. Come what may, your Army of Love and Support from us is strong and will be here every step of the way.
    Now, what kinds of things will help Theo in his day to day struggles of meeting his challenges? And what about you and Luis? And Manu? Let us know. It helps us to keep focused on being a part of this while we are so far away. And, probably can’t see you if we come up there! Text or Message anytime.
    Tons of love, thanks to you and your postings we can understand where you are at and where you are going. Cate and Terry


  2. You guys are amazing!!! We’re thrilled to hear this news – Theo is indeed a super hero! We’re continuing to send good vibes your way. Love to you all, Kristen & The Girls


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