The weather is fitting – an early snow starting to blanket the area signaling the change that is coming soon – and as I sit and write and watch the fat flakes accumulate, softening the edges of the day and dampening the sounds of the outside world I feel as if I’m situated inside a little snow globe, a bubble of sorts.
You haven’t heard from me in quite some time – I’m acutely aware as I have been fielding off texts and emails from caring friends and family who were reassured that our Will was on the road to recovery but were just, kindly and sweetly, “checking in”. I wish now I had the update that would cast all anxiety aside but I do not. Instead, I am posting on the eve of our journey back to Children’s to start another round of treatment for Mister Will.
On a warm summer day, August 8th to be exact, we got the news that Will had relapsed. We were in for a routine weekly clinic visit for labs and a quick exam to make sure things were continuing to trend in a positive direction. We laughed and chatted with our team and then went on our merry way, the drive home nothing remarkable but certainly more calm and peaceful than when Will first got discharged in late May. Those visits always held a bit of dread but as we were putting more distance from transplant day we were starting to allow a joviality of sorts into our clinic trips. We were making plans about returning to school, taking out Will’s central line and moving into a new normal. When my phone rang a few hours later, caller id letting me know it was clinic, I answered casually and assuredly. In mere seconds, however, I knew something was up – sure here was our nurse on the line but also Will’s oncologist? The lab tech had detected blasts in the peripheral blood; and just like that we learned our Will had relapsed with active disease.
Now let me tell you, we were sturdying ourselves for the impending 100-day bone marrow biopsy that was scheduled just a few days out from this particular clinic visit. Because the nature of Will’s AML was so aggressive we would not have been shocked to learn that there had been a tiny percentage of residual disease in the marrow and there was a plan for that. This news, however, cut everyone to the core and we were just there – trying to remove the dagger out of our guts. All of the sudden there wasn’t a plan. There were tears and despair, there was fear and there was a hole that needed to be filled…..the fine nurses and doctors at Children’s are healers and doers and planners and it’s real hard when there isn’t anything to do or say to help set us all right, except “we are so so sorry”….
Silver lining; we were moved back to the oncology service and some of Will’s restrictions were lifted (no unwieldy green mask!!!). His first question to his oncologist was, “Can I start school?” and the answer was the biggest and best “YES” I have ever heard. The next day we returned for a bone marrow biopsy and that evening Will kicked us out of the house and hosted a group of his best buddies for a dudes poker night – not going to lie, I’m pretty sure we told him to help himself to the Modelos in the frig. And thus we started to follow our smart and strong Will’s lead and embrace the gift of living in the moment.
Will set a few important goals; the biggest was he wanted to stay in school and make it to his very first high school homecoming before he started treatment. We are fortunate in that Will’s oncologist has a deep respect for our son and works in collaboration with him to honor his wishes while still making sure he is safe. Will’s in charge but she has final veto power (although I’d like to see her try) and so they worked together to create a reasonable plan to help him reach his goal. Will agreed to bi-weekly lab checks and full disclosure if he wasn’t feeling well and she agreed to let him jump wholeheartedly in to the full teenage experience of starting high school and all the social regalia it brings.
And that is exactly what he’s been doing, bolstered by weekly bags of blood and a drug to suppress the leukemia, Will has been doing his normal teenage thing and we have been cheering him on with gratitude and amazement. No expectations and no getting bogged down in the unfairness of the situation but just the opportunity to be under one roof, doing normal family stuff and generally just being annoying to our teenage crew. Lessons come in all shapes and sizes and our Will has taught us these past few months that it’s ok to exhale and just BE. We have had our moments of quiet and pain, we have had to turn our heads away to hide the tears while watching our beautiful boy try to exist lightly while bearing the extra weight of what surely will come. But he has strength and fortitude to spare enough to spare and so we have had the permission to be filled up by this time, this pause, this space in between.
This pause, however, is now over and we are all feeling the reality settle over us again.
Will has already been through so much, too much for anyone, let alone a kid. But that is the nature of the beast; cancer doesn’t play fair and it has picked Will to go another round. Despite the prayers, the promising results from his initial bone marrow biopsy after transplant and despite the fact that we aren’t the family this kind of “stuff” happens to we are about to bring our son back to Children’s to begin his battle again. Tomorrow Will will undergo a bone marrow biopsy to get a new baseline as well as an LP to administer intrathecal chemo into his spinal fluid, just as he’s done countless times before. We will then make the walk down the hall to 7 East and be admitted to start another round of chemotherapy. It’s as he’s done before but with a bit more of a hardened warrior’s heart; who could blame him. And we will stand watch for as long as it takes; our sigils a bit more tattered but stitched back together by hope for Will’s future and the love we have for our family.
That’s it for now, tired mama here and need to sign off – peace and love to you all xoxo
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