The Relapse. The Plan.

Relapse high-risk AML is a wild world, much different than the initial diagnosis for many reasons. When Aspen was first diagnosed she was critically ill, warranting an immediate response with treatment without much time to really think about the “right” option. At that time Aspen’s disease burden was extremely high, flowing through her peripheral blood; the leukemia was rapidly spreading and if we hadn’t acted immediately she would have likely passed within a short period of time. In Aspen’s case of relapse, the disease was found in low levels in the bone marrow during a routine monitoring biopsy. For context, at initial diagnosis Aspen’s blood contained ~85% leukemic blasts, whereas at relapse the disease was found at .01% in the marrow, i.e. barely detectable. With disease levels so low we had the “luxury” of working through various treatment plans and consulting with a wide variety of some of the foremost leukemia experts.

In the medical world, like anywhere else, there are practitioners that lean conservatie, i.e. stick with the tried and true, and those that lean more experimental/progressive. The fun part is that neither ideology is wrong nor right. In Aspen’s case the tried and true has proven to never work. Aspen has an out-of-the-box disease that warrants a similar response. After much consideration, we chose an experimental route that has shown promise in pre-clinical trials, meaning most of the evidence of efficacy was shown in a lab, not in people.

Going the experimental route meant that we had to find an institution that was willing to administer the experimental drug, STRO002, and go through the necessary steps of accessing the drug. In this case, the only way to access STRO002 is through compassionate use with approval from the Food and Drug Administration (FDA). Fortunately, our oncology team supported our decision and went to bat for us. On Wednesday, the FDA granted compassionate use so that Aspen can access STRO002. Aspen will be 1 of 10 children with access to STRO002. Ultimately, we do not know whether the drug will work, but at least there’s some research to indicate that it can, unlike other known treatments.

Many chemotherapy regimens require the use of a central line to administer the drugs into the bloodstream. Yesterday, Aspen had surgery to re-implant the central line that was removed only 2-months ago. She also had a repeat bone marrow biopsy to ascertain an updated baseline of disease burden and a lumbar puncture to determine whether the disease metastasized into her spinal fluid. Fortunately, the disease has not spread into her spinal fluid. We should know more about her bone marrow in the next few days.

On Monday, Aspen will start outpatient chemo, receiving an infusion each day for five consecutive days. Then she will have a two day break before receiving STRO002 around Day 8. She will also receive an additional chemo agent after STRO002, but the timing remains to be determined. We will have the final plan on Monday morning before treatment actually starts.

Next week is a massive shift in our house. Aspen starts chemo again. Elliott is going back to school, the same one he was at prior to COVID, which introduces a whole new level of anxiety. Children in school are vectors for all kinds of viruses and bacteria, which clearly poses a huge risk to Aspen who will become severely immunocompromised, again. However, we have to make hard decisions that are ultimately in the best interest of our children and family. As Aspen progresses through chemo she will likely become ill, commanding even more time and attention, rightly so. With Troy needing to work full-time and Ashely as the primary caregiver during the day, school was just one of those other difficult, but positive, decisions that had to be made.

Ultimately, the use of STRO002 in children with high-risk AML, specifically RAM-phenotype AML, would not be possible without the work Dr. Soheil Meshinchi funded by Project Stella. Project Stella is funding Dr. Meschinchi’s work to save Aspen and kids like her. Rare diseases in children simply are not funded through normal channels like the National Institute of Health (NIH) or pharmaceutical companies because there’s not enough people affected by the disease, meaning there’s no money to be made on our kids. For context, only 4% of NIH funding for cancer goes to pediatric cancer. Our children deserve more. Please visit https://www.projectstella.net/ to learn more about Project Stella and the important research being done.

Hold your children close, and be kind to one another.

Relapse high-risk AML is a wild world, much different than the initial diagnosis for many reasons. When Aspen was first diagnosed she was critically ill, warranting an immediate response with treatment without much time to really think about the “right” option. At that time Aspen’s disease burden was extremely high, flowing through her peripheral blood; the leukemia was rapidly spreading and if we hadn’t acted immediately she would have likely passed within a short period of time. In Aspen’s case of relapse, the disease was found in low levels in the bone marrow during a routine monitoring biopsy. For context, at initial diagnosis Aspen’s blood contained ~85% leukemic blasts, whereas at relapse the disease was found at .01% in the marrow, i.e. barely detectable. With disease levels so low we had the “luxury” of working through various treatment plans and consulting with a wide variety of some of the foremost leukemia experts.

In the medical world, like anywhere else, there are practitioners that lean conservatie, i.e. stick with the tried and true, and those that lean more experimental/progressive. The fun part is that neither ideology is wrong nor right. In Aspen’s case the tried and true has proven to never work. Aspen has an out-of-the-box disease that warrants a similar response. After much consideration, we chose an experimental route that has shown promise in pre-clinical trials, meaning most of the evidence of efficacy was shown in a lab, not in people.

Going the experimental route meant that we had to find an institution that was willing to administer the experimental drug, STRO002, and go through the necessary steps of accessing the drug. In this case, the only way to access STRO002 is through compassionate use with approval from the Food and Drug Administration (FDA). Fortunately, our oncology team supported our decision and went to bat for us. On Wednesday, the FDA granted compassionate use so that Aspen can access STRO002. Aspen will be 1 of 10 children with access to STRO002. Ultimately, we do not know whether the drug will work, but at least there’s some research to indicate that it can, unlike other known treatments.

Many chemotherapy regimens require the use of a central line to administer the drugs into the bloodstream. Yesterday, Aspen had surgery to re-implant the central line that was removed only 2-months ago. She also had a repeat bone marrow biopsy to ascertain an updated baseline of disease burden and a lumbar puncture to determine whether the disease metastasized into her spinal fluid. Fortunately, the disease has not spread into her spinal fluid. We should know more about her bone marrow in the next few days.

On Monday, Aspen will start outpatient chemo, receiving an infusion each day for five consecutive days. Then she will have a two day break before receiving STRO002 around Day 8. She will also receive an additional chemo agent after STRO002, but the timing remains to be determined. We will have the final plan on Monday morning before treatment actually starts.

Next week is a massive shift in our house. Aspen starts chemo again. Elliott is going back to school, the same one he was at prior to COVID, which introduces a whole new level of anxiety. Children in school are vectors for all kinds of viruses and bacteria, which clearly poses a huge risk to Aspen who will become severely immunocompromised, again. However, we have to make hard decisions that are ultimately in the best interest of our children and family. As Aspen progresses through chemo she will likely become ill, commanding even more time and attention, rightly so. With Troy needing to work full-time and Ashely as the primary caregiver during the day, school was just one of those other difficult, but positive, decisions that had to be made.

Ultimately, the use of STRO002 in children with high-risk AML, specifically RAM-phenotype AML, would not be possible without the work Dr. Soheil Meshinchi funded by Project Stella. Project Stella is funding Dr. Meschinchi’s work to save Aspen and kids like her. Rare diseases in children simply are not funded through normal channels like the National Institute of Health (NIH) or pharmaceutical companies because there’s not enough people affected by the disease, meaning there’s no money to be made on our kids. For context, only 4% of NIH funding for cancer goes to pediatric cancer. Our children deserve more. Please visit https://www.projectstella.net/ to learn more about Project Stella and the important research being done.

Hold your children close, and be kind to one another.

4 responses to “The Relapse. The Plan.”

  1. Continued Peace my friends. When you’re doing rodeo one must Cowboy up. Not all truths are facts. Always in my heart.

    1. Thank you Marcia!

  2. Megan browning Avatar
    Megan browning

    God bless this sweet baby.. I send a prayer every single day for Aspen and will continue to pray for Aspen and all of you 💗💗💗💗

    1. We appreciate it Megan!

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