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Monday Wishes

by | Mar 24, 2019 | 0 comments

I am cocooned at Children’s with my boy on this rainy evening – we are enjoying the more mellow pace of a Sunday night here and soaking up the moments of calm before tomorrow arrives.  We look to Monday with both excitement and a little trepidation as Will has his bone marrow draw and biopsy in the morning and there is so much on the line for this kid.  I am humbled by his strength and tenacity in the midst of so much, I am in awe of how much he has endured and how he continues to stay positive and engaged and I am honored to be by his side no matter what tomorrow brings.

If the results of the biopsy are clear (no evidence of leukemia) Will will be able to make it to bone marrow transplant.  If the results show very little evidence of disease there is a possibility he can repeat the same round of chemos to try and achieve “remission” and subsequently transplant.  If the results are not in his favor we will have to look at alternative clinical trials – a option that I have managed to pack deep away and do not desire to unfold.

We are praying the powerful combination of chemotherapies he has received this past month has worked in his body as it has worked for the many adults preceding.  We are praying for the best possible outcome – the entire oncology team, bone marrow team and nursing staff will be with us in this hope.  Will is leading the way to better treatments for other kids diagnosed with this specific challenging biology comprising their AML and so we know that this is bigger than just a moment in time when a family sits on pins and needles and waits for results.

I am just now struck by the position that we have been put now that cancer has snaked it’s way into our family; just a few months ago we learned Will would need a bone marrow transplant and the earth seemed to fall away at the news.  Oddly, it will be the learning he CAN move on to BMT that will put the earth back under our feet. Cancer is weird like that, perspective being a foremost lesson.

The plan for BMT is unusual as they need to meet Will’s aggressive cancer with a very aggressive plan for transplant.  Typically patients would be given adequate time to recover from the oncology side of chemotherapy to allow the body to get stronger and more stable before transplant.  In Will’s case however, they will push him quickly into the harsh conditioning regimen preceding transplant as they know his leukemia is fighting to make a hasty reappearance.  His BMT doctor told me he would never do this on an older patient as it’s very risky but it is the only way for him to get Will on the other side of this diagnosis.  The silver lining here is that his brother, Stathi, is his donor – a perfect match – and is ready and willing to go at a moments notice and we rejoice that we have been given a “win” in a war that has been so very challenging to wage.

In a journey full of unwelcome twists and turns, full of “family meetings” where we have stared into the eyes of Will’s doctors and not found as much reassurance as we were seeking, full of unwanted suffering and pain for our boy we have also, as I’ve stated before, experienced so much love.  My heart holds on to that and it quells the rising tides of anticipation for tomorrow.  We stay in the moment because that is what we have and it is enough.  In the meantime, in your quiet moments this evening we ask for your prayers and beautiful energy to carry us through to tomorrow and the days that follow.  Love and peace from room 761 and Go Blue!!!!

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Will’s Stuff

While in treatment Will was often confined to his hospital room. In order to satisfy his creative and entrepreneurial nature he opened up a little online clothing business featuring his own designs. Soon after he began donating portions of his own proceeds to childhood cancer charities and in in this spirit we have kept the store open and ALL proceeds now go directly to WillStrong Foundation. Shop with purpose and help us help others!