We are accustomed to live our lives either moving toward a goal or an event or reflecting on moments in the past and this is certainly true even for our family as we live, somewhat suspended, in the midst of Will’s diagnosis of AML. Many of my days are hazy, they have run together in a blur of landscapes comprised of drives to and from Children’s Hospital, piles of laundry in baskets overflowing to greet me when I go home, the halls of Children’s Hospital lit in florescence and lined with artwork meant to impart cheer to those who walk them, the door to Will’s room opening and closing as nurses and doctors come and go. This morning, however, I reflect on moments in time that have earmarked the last few chapters of our lives and I am astounded how far we’ve come and what we have to be thankful for, even in the redundancy of our days.
This past Saturday marked five months at Children’s hospital. It was also the day we gathered, along with several other families, to throw a graduation party for Stathi and three of his friends (all who’ve grown up together since elementary school). As I left Will’s room on Saturday morning, I reminded him that it was the day of his brother’s party; Will got very quiet and a little sad and we sat together in silence for a few minutes holding each other’s hands. It occurred to me that Will is processing being stuck in his room at Children’s in so many different ways and not being able to attend the party was disappointing but also drove home the amount of “living” that has gone on outside these walls.
Tonite we will attend the Senior Banquet and tomorrow night Honors Convocation. Wednesday morning we will gather at Red Rocks to watch our eldest son graduate, with honors, from high school and we will celebrate with joy his achievement and the start of his next adventure at Colorado State University. We will do so without our youngest boy and his absence will be felt in ways I can’t even begin to imagine but we are profoundly grateful in the knowledge that Will is tucked into his room doing the important work of healing and strengthening his body and his soul. Although the perfunctory graduation pictures will be missing a VIP we WILL be together soon and we know Stathi will gladly don his cap and gown for a family picture “redo”.
As for an update, Will is doing exceedingly well. He is on day plus 17 – day Zero being transplant day on May 3. Stathi underwent the harvest early that morning – they took 1/2 gallon of marrow out of him, processed it and then later that day infused the beautiful stem cells into Will’s port. Stathi stayed the night right down the hall from Will and, although it felt kind of like a fun little sleepover, I certainly did not like seeing two Maniatis’ on the Blood Cancer floor at Children’s.
We were told that the next few days would be the “calm before the storm” and, sure enough, on day four Will developed Mucositis. Without going into too much detail, Mucositis is one of the delayed effects from the conditioning chemo and it destroys the mucous lining of the mouth and all the way down into the stomach and anus. It causes horrible sores and shedding of the lining and is intensely painful. Now on day 17 it is perhaps improving a touch and we hope to see it clearing up even more in the next handful of days. Mostly BMT is a waiting game as they teams looks at his counts and bloodwork to make sure Will is trending in the right direction. In another few weeks he will have a bone marrow biopsy to determine if Stathi’s cells have taken over as expected and to look for any evidence of disease. We feel very positive and hopeful but the reality is this is how our lives will be for a very long time…..hopeful waiting in between tests and results.
In a moment in time, seared into my psyche, our lives changed when our pediatrician called and told us to head straight to Children’s Hospital – that Will likely had leukemia. We’ve had many moments in time since then, mostly of the test result and family meeting variety, that have pervaded the last five months and kept us all perched on cliffs with edges that promise a free fall into a pit of despair. In between those moments we’ve shed more tears of sadness and joy than I thought possible. We’ve come together and we’ve fallen apart. We’ve played a lot of board games and walked a lot of laps and we’ve spent many hours in silence watching our boy fight through pain and suffering more intense than I’ve ever seen. We’ve become used to sleeping in increments punctuated by beeps of pumps and alarms. We’ve missed many moments in time in our other boy’s lives and we’ve let too much fall between the cracks. We’ve also been assured just what incredible humans Stathi and Jack are. We’ve become so much closer with our family both immediate and extended. We have been picked up and carried by our loving friends and community when we couldn’t imagine another step forward. Oh, and all that laundry? This is where I must give a huge shout out to my mother-in-law, Billie Kay (aka the Laundry Lady) for taking over that duty as I’m quite sure without her my family would not be clothed at all at this point….it really does take a village!
Please continue to pray that Will’s body is receiving and accepting the cells from Stathi and that his body continues to fight off infection and other effects from this intensive treatment. Your prayers are working and our Will is being watched over in ways that I can’t explain. Although I wouldn’t wish this diagnosis on anyone there is much to be thankful for in the moments in time….and the space in between.