Last journal entry had us waiting for an increase in Will’s counts to allow a short return home before starting round two of chemotherapy. Will was feeling pretty well; increasing his physical activity and enjoying a hearty appetite. We were filling our days with laps around the wing, board games and trips to whatever food establishment served what Will, like a pregnant lady on bed rest, was craving. We’d dash off to fill his order and then marvel at his appetite as if somehow we could cheat the whole diagnosis by restoring him back to his original weight and youthful vigor. The waiting game to return home, while at times frustrating, almost seemed “normal” and we fell into the somewhat predictable rhythm of each day feeling assured all was on track.
But, alas, behind the returning rosy glow and the sturdier looking frame, the leukemia had started to sneak it’s way back into Will’s little body. The good counts had, indeed, risen but so had the percentage of “blasts” in his blood which told a story we did not want to hear. On Monday they performed another bone marrow draw and lumbar puncture which confirmed evidence of leukemia and, once again, the bottom fell out from beneath us – the induction round of chemotherapy had not been as effective as they had hoped.
We have an incredible team of doctors at Children’s and they recognize there is much value in time away from the four walls of the hospital room, the poking and the prodding, the constant reminders of being sick. They granted Will a few days reprieve while they worked to evaluate the information gleaned from the latest bone marrow draw. The caveat for our little sojourn was that Will had to do every-other-day outpatient labs and if the team decided any levels looked alarming he’d have make a hasty return to the hospital.
So, we packed up his room which was full to bursting with decorations we’d brought in over the course of the past month, snacks, games, clothes, cozy blankets – precious items to provide cover from the sterile environment of the hospital. We arrived home Monday night and it was pure – albeit fleeting – happiness having our kid back. He mostly remain parked on the couch as Monday’s procedures and the still-active cancer had taken their toll on him but, even so, all of us living under one roof was soothing to our fragile souls.
Behind the scenes Will’s docs have been consulting with other specialists at Dana Farber, St. Jude, to name a few, to come up with the new treatment plan. His diagnosis now officially includes Myelodysplastic Syndrome (MDS) which, in all likelihood, was the precursor to his Acute Myeloid Leukemia. There are several types of MDS and, in keeping in line with all the other rarities in this situation, the type Will has is more unusual (MDS with excess blasts). The goal is still a bone marrow transplant (BMT) but the treatment plan will be tweaked accordingly to get his cancer into “remission” before he goes to BMT. Once again we readjust and, with chins up, we move forward. I try not to get online as it’s a dangerous rabbit hole that can take me down dark pathways where I should not go but when I do I am astounded at the layers of rare and unusual elements to Will’s cancer. It’s as if he’s a 75-year old man, not a 14-year old boy who, heretofore, has never had any health issues to speak of.
Friday afternoon the familiar number of Children’s popped up on my phone. Will and Jack were building a lego creation, Stuva was just coming home from a Costco run, I was drinking a cup of tea, making a todo list for the weekend and trying to motivate to go to the gym (needless to say, it’s been a while:). I considered ignoring the call as I just didn’t want this little bubble of nirvana to be broken but, of course, when your child’s cancer doctor calls you answer. Time to come back, guys – the percentage of blasts were rising again and his body was starting to pay the price.
So here we are, tucked back in our little spot – treatment with the new combination of therapies will begin today. And, although we seriously considered hopping a plane to Mexico instead, I’m glad we’re here – I’m feeling hopeful and strong. I’m feeling intense gratitude for all the children and parents who have walked this path before us; I’m feeling overwhelmed by the ongoing love we receive from our people and I’m feeling connected to humanity in a way that I didn’t know was possible. My eyes land on those around me and I see and feel deeply, layers peeled away, the pain and joy that it is to be alive…..to quote Mary Oliver ” My work is loving the world.” With much love and light to each of you, I continue to ask for the same in return in order to raise the vibration around the healing efforts for Will and every other person who is suffering right now.
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