September is a whirlwind month for our family. It is Childhood cancer awareness month, blood cancer awareness month, the Kendal's Angelversary, and Kenedi's remission date. This September, we have decided to continue to fight back against the nasty disease that stole one of our children - sweet Kendal Mae - and continues to affect our family not only with the loss of her, but the continued remission of Kenedi.
The Leukemia and Lymphoma Society is the only organization who has taken AML on in over 40 years with their Beat AML master trial. Although this trial is currently for adults only, I am happy to say that the LLS has recently made it their mission to beat pediatric AML. Now is the time. To achienve this it is necessary to continue to raise awareness and fund research for this fight.
For those of you not familiar with our story, please read below. We appreciate all the continued love and support as we enter our year of seconds without Kendal, and while we continue to celebrate Kenedi and her being 3 years in remission.
As many of you know, our identical twins, Kenedi and Kendal, were diagnosed with Acute Myeloid Leukemia (AML) at 3 months old. In August, 2015, the twins and I quickly moved into the hospital in Rochester, Minnesota to begin their fight, while Aaron and Teagan (2.5 years old at the time) remained living in Pierre, South Dakota.
The twins underwent 4 rounds of chemo while living inpatient, in one room, for nearly 6 months. While AML has a 26% survival rate with some very dangerous chemo treatment, the twins proved to be fighters. In January 2016, after 127 days, 80 doses of chemotherapy (4 total rounds), 19 dressing changes, 106 lab draws, 27 different procedures (echocardiograms, ekgs, x-rays, ct scans, and more), 16 blood product transfusions, 4 bone marrow biopsies that included sedation (all times two children), a new PICC line for Kenedi, and an endless amount of antibiotics and other medications, Kenedi and Kendal were released from the hospital in remission and off treatment.
After enjoying an amazing year out of the hospital (17 months of remission), Kendal’s cancer came back. Relapse. Devastated doesn’t even begin to describe how we were feeling. But we forged ahead. In February 2017, Kendal and I moved back into the hospital and began gearing up for another fight. Kendal underwent 2 rounds of chemotherapy followed by a bone marrow transplant in May, 2017.
Besides some minor side effects, Kendal sailed through it all like the tough cookie she is. But despite being so resilient, 36 days after her transplant we heard the unthinkable. Kendal’s cancer had yet again returned. At this point we weren’t willing to give up and searched high and low for any other treatment option. It was then we learned of a drug called Mylotarg. The chance of it working was slim and the drug didn’t come without risk – Mylotarg had previously been pulled from the market due to being more harmful than beneficial – however, with further research and testing, and with the help of the LLS, in July, 2017 Mylotarg was re-approved by the FDA. And we knew we had to try it as our last effort to save our baby girl. Kendal tolerated this drug well, but again, her cancer came back quickly.
At this point she was considered terminal so we packed up our tiny hospital room, headed home, and enjoyed our last moments together as a family of 5. On September 7, 2017, Kendal Mae Breyfogle died in our arms.
We will never stop fighting for cures. It's in our blood.
The Breyfogle Family