marching orders

The last forty-eight hours or so have been so very hard. By the end of the day Friday, Caemon was very sick, and by yesterday, the doctors were trying to prepare us for potential ICU visits and making decisions we don’t want to have to make. These were the worst conversations, and they have had us very heavy-hearted. His disease is very aggressive, and it’s not been showing any signs of giving up. As the day progressed yesterday, however, things started to change a little. Caemon started eliminating a bit more fluid. Some of his swelling decreased, and he started breathing easier. This morning, his doctors came in more pleased, pleased that at this point he could turn around at all, pleased that his numbers are looking a little responsive to what they’re doing. That little bit of hope is enough to carry us for now.

Today, Caemon started a new therapy, a drug called Azacitidine, which is meant to affect his DNA in such a way that it may basically turn off some of his leukemic genes. It is treated a bit like chemotherapy, but instead of obliterating everything, it makes genes act differently, potentially helping get his leukemia under control. It is a rare drug here; the nurses, many of whom have been here for a decade or so, have not heard of it. We’re learning the best we can from the doctors, but it is a therapy that is quite a bit different from your usual chemotherapy. After five days of this infusion, he will receive another bag of donor cells (called a DLI: donor lymphocyte infusion). Beyond that, he gets more Azacitidine, and we wait and see if this works. It has worked in some patients; there is no telling how it may work for Caemon, but we have hope.

You see, not very long ago, leukemia was a death sentence to most children, and now, there are types of leukemia (a type of ALL specifically) with 90% cure rates. There had to be children who broke the mold, for whom treatments began to work. So much research is happening every day on this disease that maybe, just maybe Caemon can be part of a new round of survivors, a wave of miracles.

Today, when his team came in, one of the doctors said that his improved kidney function was a bit of a miracle. I would like this to be the first in a series of many. Let our boy be a miracle, a testament to what can happen when brilliant science and faith and love and magic all come together at once.

So, beloved supporters of Caemon all over the world, we have some marching orders for you: Keep your hope alive. Send love our way. Say your prayers and send your energy whichever way you know how. Know that miracles can happen and that our boy is pure magic.

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On a slightly different note, yesterday, we moved to a new room. A nurse had asked us what he could do for our family to help us, and we told him we wanted to be able to stay in the same room together. He and other nurses began to explore different possibilities, and by morning, another dear nurse friend was calling to place an order for a bariatric bed (a bed with a width almost twice that of a normal hospital bed) and was arranging for a new room to be cleaned. The room is on the corner of the hospital with windows filling two walls–trees off of one side and water off of the other. It is a room for healing. We hope we’re here for awhile.

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