On running a marathon (from FB 5/7)

Three weeks ago, our lives were normal. Well, as normal as they could be during a global pandemic. Today, Adeline completed chemo as part of day 15 of her induction phase of treatment. Today, we got even more information about her cancer. And today, honestly, it feels a little heavy. The doctors have discovered that Adeline’s cancer cells have monosomy 7. That means that her cancer cells have only one chromosome instead of a pair at the 7th chromosome. Her normal cells do not have this defect, so the deletion of the chromosome is happening somewhere with the mutation. This is also most often seen in myeloid leukemias, not lymphoblastic. T-cell ALL with aberrant myeloid markers=rare. T-cell ALL with aberrant myeloid markers AND monosomy 7=super rare. There is also a higher risk with monosomy 7 for a relapse of leukemia. It is not uncommon for patients with monosomy 7 leukemias to move forward with a bone marrow transplant even with remission to reduce the risk of recurrence. So today, we discussed next steps for Adeline after her induction phase, which ends on May 21st. She’ll have a repeat bone marrow biopsy, they’ll do HLA typing to find her a bone marrow donor match if needed, she’ll get a week respite from chemo, and then she moves on to a 70+ day consolidation phase of more chemo. Then a repeat biopsy and discussions about a possible transplant. Today our sweet Crawford had his HLA typing done so our doctor can eventually determine if he’s a match. On April 17th as I was driving Adeline to the ER at the urging of our pediatrician, I thought to myself “This is going to be a marathon.” Not only that, but this is like having a bib slapped on our chest and being shoved onto a marathon course with no other option but to run. A marathon we didn’t sign up for. But you all showed up and cheered us on at the start in a way that I can’t explain. You gave us the energy and strength to take those first steps and find a pace we can manage and a steady rhythm. You’ve been high-fiving and cheering from the sidelines. And today I realized- this is only mile 1. We have a LONG way to go. But we also know a thing or two about marathon running and cheering each other on. There may be some miles where we’ll need people to step in and run (walk?) along side us. We’ll need to see your smiling faces along the way, offering support at aid stations, telling us we can do it. But with you, with each other, we know this is a race we can complete. And we can’t wait to drink that celebratory post-race beer with you all at the finish.