6 months old

Today is kind of a big day. January 7. Exactly 6 months from when the stem cells from an unknown little boy’s umbilical cord were dripped into the veins of my 17 year old cancer-fighting boy. Half a year since he was re-born with another’s DNA taking over his own blood in hopes of giving him life-long freedom from anaplastic large cell lymphoma. Twenty six weeks plus 2 days since we knew that they had completely destroyed his bone marrow factory using intense chemotherapy and radiation treatments with his only chance of survival being the cells from this umbilical cord doing their job, setting up shop, engrafting, giving him life.

Six months ago, we had no idea what these 184 days would look like. They don’t really tell you just how awful it is going to be. Partly because they don’t know exactly the level of awfulness that awaits you. And partly because there is absolutely no way to fully grasp just how horrible it will be. You sort-of think you understand, because everyone keeps telling you it’s hard, but there is no way to know until you’re standing in the middle of it. To purposefully bring your child to the edge of death in order to attempt to save him with someone else’s cells and pray that nothing else breaks along the way…it is impossible to think that it would be an easy process, yet to imagine just how terrible is equally impossible.

There were plenty of extremely dark days. When kidney failure set in. When vomiting would not let up after 90 straight days. When he was in so much pain he asked to die rather than endure. When he sat awake all night long crying, hurting, hungry, scared. When he couldn’t walk or stand or sit up. When his insides bled. When his eyes turned red from blood vessels breaking. When he gained 25 pounds in a couple of days from water retention. When his face swelled, nearly closing his eyes and he stood crying as he looked at the reflection of himself, unrecognizable, in the mirror. When he tested positive for a virus and a fungal infection. When his heart filled up with fluid. When his blood counts would drop without warning. When we didn’t know what day +184 would look like.

I remember saying a million times in those hardest of days, if I just could know how this is going to turn out. I don’t know what would have changed inside of me. Less anxiety, I suppose. There is something so unleveling in the unknown. To stand with one foot on the ground of the present while holding the other up hoping to just drop it onto the ground of tomorrow. Balancing in the awfulness of now, longing to know that the next step {or one down the way a bit} will be solid & secure. Or even knowing that is will be horrible, that the world would be falling apart. As ridiculous as it sounds, to know that it will end badly seems more comforting that not knowing how it will end at all. It’s the not knowing. It is uneasy. Painful. Turbulent.

Those days taught me a lot. Maybe to be alright with the uneasy of the unknown. Maybe to wait. Maybe to trust. God sat close to me on those days. He never told me what this day {Day +184} would look like. He didn’t share that my boy’s kidneys would heal up and he’d walk again and he’d finally stop vomiting and there’d be no signs of cancer or the millions of other things I wanted to know. He didn’t crystal ball me to where I wanted to see. He simply sat beside me and listened to my cries & complaints & anger & pleas. He allowed me to feel the squeezing uncalm of those moments. Perhaps in order that I would also feel the tender calm & security of him holding me.

Today. Six months. My sweet ginger boy is doing really well. There are still a ton of unknowns. Will the cancer return? Will a new cancer caused by the treatment to get rid of this cancer appear? Will his kidneys stay healthy? Will his heart? What if he catches influenza or chickenpox or the measles? A mama could go crazy. But I try not to live in that space…rather, I try to live with both feet firmly planted in today being held securely and calmly. Remembering how well and how gently he’s carried me so far & knowing he’s not likely to drop me now.

Because of the LORD’s great love we are not consumed, for his compassion never fails. They are new every morning. Great is your faithfulness. Lamentations 3:22-23

One thought on “6 months old

  1. I’m so glad that things are going well at this time, and sure thought more than six months had passed us by. Are you, your husband and other children also doing well? I’ve thought of you and Ginger boy often, I even tried to email you once, but my old self can’t manuver around a blog well enough to figure out how to do that. You continue to be in my prayers. Hallelujah for umbilical cords!!!!

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