Pressing Start.

tuxedoAt 6:17 p.m. last Wednesday, I gave thoughts and intentions to St. Jude and Mary.  I took a deep breath and looked at Ky and watched as he turned his eyes away from my tears, he wasn’t shocked, but it wasn’t necessarily something he was ready to see either.  Then I said thank you, over and over, to the magical man in the Netherlands who graciously gave a liter and a half of his bone marrow to my son.  I verified with the nurse that I was about to press the correct button, then I pressed start.

I pressed start on a chance to put the nightmare of AML behind us.  AML might always be like that awful neighborhood dog that got off his leash once and bit Ky, hard.  Now, no one in our family dares walk by the metaphorical dog slowly, even if the chain is reinforced and no one thinks the dog will get loose again.    Maybe we’ll get away from it, maybe we won’t.  Our whole family wants to run because we think we can outrun it.  I pressed start to give Ky that chance, to give us that chance.

I pressed start to honor the work that Ky has done thus far:  an early pick-up from school that turned his whole world on its head – he didn’t go home for four weeks that time, two intense rounds of chemo, two pretty gnarly infections, seven plus weeks in the hospital, remission, a bridge chemo program at home to hold him in remission.  He’s put in work.  Damn it, he deserves this chance.  He’s more than earned it.  I pressed start to honor Ky.

I pressed start for a five hour infusion of a substance that, on a table, would look like ketchup – but in a giant bag, hanging on a pole – it takes on a serious mystique.  It was a quiet five hours.  We had very few lights on for most of it.  Nurses warned me it would likely be anti-climactic; they haven’t yet mastered this highly emotional mama.  No bells went off, no music chimed overhead, there was no ticker tape parade.  Ky wore a faux-tuxedo shirt all day and into the night, which made me smile each time I looked at him; it was the perfect shirt for the occasion.  It was silly and Ky-like, but it let me wonder if someday he’ll go to a prom or get married, he’ll wait for his partner at the end of an aisle, ready to make a promise for a long life together.  For now though, there was a pickle boy, his savage mama, and a giant bag of marrow.  How much does hope weigh?  In this case, 3.3 pounds.  But I pressed start for an infinite amount of hope.

I pressed start as were at the base of what we’ll call Mount Awful.  The prize for reaching the summit is engraftment, when the donor marrow settles into its new home and begins making blood of its own in Ky’s body.  Ky’s conditioning regiment is cumulative – the toxic built as we went along.  Fumbling toward awful, we couldn’t have known it would be quite this bad.  In fact, we hadn’t even reached the base of Mount Awful when his cells went in.  When his numbers didn’t dip as quick as I thought they would, the attending physician assured me that the two chemo-therapies were ablative; any fast-growing cell was a target for the duo.  The result of cumulative and ablative are a combination that no one, especially not a child, should experience.  His body is pissed.  Add to that mix a bunch of new cells that, with all the best intentions, are trying to find their place in a whole new world (Ky’s body).  Ky’s body doesn’t entirely trust the new cells to not be up to no good, so – it’s suspicious.  Pissed and suspicious make for tears, his and mine, vomit, mostly his, a high fever, him. and sleepless nights, me.  I pressed start, knowing it will be worse before its better.

I pressed start and dove a little deeper into being a medical mama; a mama who has to walk a delicate line between just wanting to snuggle with my baby and forcing myself to help him negotiate this world.  A mama who can no longer truly hear the dinging of the alarms on his IV – they’re more natural than a television in the background at this point in my life.  Alcohol wipes have become smelling salts for me.  When one of those 2×2 packages is opened, even if I’m in the bathroom showering, I can smell it; something is wrong, they’re accessing his central line.  A mama who chooses to participate in rounds, with Ky’s blessing, so that I can learn as much as possible about what’s going on.  Slowly, I’m picking up their vernacular…and with the confidence of a stone rolling down a hill, no choice but to gather speed, I’m learning to speak their language, enough to watch for trends and provide data that I can, when I can.  I pressed start, he’s counting on me to be his voice.

How did I end up pressing start?  That’s the silver lining; for me, a moment of beauty in this disaster.  Earlier in the day last Wednesday, when we knew Ky’s cells had landed and were being prepared for his body, Colleen asked if Ky wanted to press start on his new marrow – “Lots of kids your age love doing that!”.  Ky looked up at her, over to me, then asked “Can my mama do that?  I want her to press start.”

 

 

 

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40 thoughts on “Pressing Start.

  1. As you always do, you’ve left me in tears mama. I wish I could give you a hug. I hope in 5 weeks, I’ll be able to do that when I go to Maine. For now, I’m sending all the love I have. You are continually in my thoughts. *hugs*

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    1. I am so humbled by your strenght and love. I am lost for words. i am inspired and reminded what is truely important….sending strenghth and prayers.

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  2. This is beautiful and so scary at the same time. I pray for his young body. I have been following what I see here and there on Facebook hoping to hear about how he is doing. I will continue to pray for your family.

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  3. I am so touched by your post. I pray daily for Ky and each of you who travel this path with him. He is a lucky boy to have such love surrounding him. I have known your father in law since we were kids and have watched your husband grow into the fine fellow he is. Keep the faith and know that all of you are in the prayers of many many people.

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  4. I pray for this blessing of bone marrow to do its magic and make KY better so he can see all those days you’very wondered about. It truly is heart-breaking and makes me sob. Love and health and healing.

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  5. Thank you for this update. People far and wide are always asking me about Ky. He has touched more people than he can ever know! He is one loved boy!! Hugs from Mrs. Sands ❤

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  6. I am so touched by your words. He’s on the right road and headed in the right direction. I can feel it. I know it. Sending positive thoughts and love your way as always ❤️

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  7. Our family is holding Ky and the rest of your sweet family in our hearts and remembering you all daily in our prayers. All our love as you navigate these next steps!

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  8. I’m sitting in my Atlanta apartment crying. Though the tears aren’t tears of sorrow. They are tears of joy, because I know your son will get to the top of his mountain. He has an insanely strong mother and family right next to him. My prayers go out to you ma’am, but your son won’t need them. He’s going to kick that nasty craps butt right out of his body. I do wish I were up there to join in the fight, but Have no choice but to fight with you here in Atlanta. I love and miss the laughter and exuberant joy that filled all of us at Bridgton with. You will forever be my mom away from home. I will be keeping up on you and your beautiful son and praying every night for you both. If you ever need anything I’m here! -Mr. Pink fingers 💅🏻 (Christian)

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    1. Christian! Thank you for this – you are so sweet. We appreciate your prayers so very much.

      I really did love that color on you. My fingers are a hot mess – it’s good you aren’t here to see how badly I need a manicure right now. 😉

      Wishing you well and looking very forward to staying in touch. xo

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    2. Hey Binaca,
      Leigh Hayes shared this with me, and hope its okay to give my love and support to Ty and you and your family. We are thinking of you all in this hard time and hope the worst will soon be over.
      Justin from the bookstore

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  9. Your strength never ceases to amaze me. It warms my heart, my soul. Ky reminds me of Asland, his roar is heard all the way in China! He pulls strength from you and you pull strength from him. This bond is invincible. We are all witnessing it first hand through your incredible words. I think you should write a book about your experiences to do what you do best help others overcome their fears! Love to you all.. Judy

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  10. I discovered this blog through Chalmers, where I work. Though we have never met and most likely will not, I have taken Kyan and your family as my own, praying for you, an orange ribbon hangs on my cubicle and I follow this blog. Your son is Soo amazing in his spirit and will, you have stepped up magnificently and with great will. I wish you all the strength and courage you all need at this time and will be celebrating when you come back to Bridgton!!

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  11. Oh sweet loving momma….you and sweet Ky are pinnacles of courage and strength..I continue to pray and keep Ky and your whole family in my thoughts and prayers. You have whole cities, towns and families behind you…a force that refuses to give up …we’re are riding this storm with you…every ebb…every flow..sending lots and lots of love…looking forward to celebrating with you both❤

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  12. Dear Macdonald family,

    We’ve been following your journey on Facebook and you all have been in our hearts and prayers. Binaca, you have such a gift with words. I just know that Ky will conquer this mountain. He has amazing support behind him, starting with one awesome mama. Hugs to you all.

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  13. You leave us speechless with the courage you all have. Your hope and faith is inspiring and make us know that Ky will be fine. I remember him trick or treating at our house when we lived on Pleasant St. I remember him waiting with you for his sister’s bus at the end of our street. He has grown into a fine young man, and will grow into an outstanding adult. He will be compassionate and kind – not just from this experience, but from what you and Bill model for him. Keeping you all in prayer, including his donor. Pam and Bill Brucker (lived at 3 Pleasant until 2 years ago).

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  14. Binaca, your words are poetry and left me with tears in my eyes – Kyan is wise beyond his years – his values run deep and you should be so proud of the role you have played in raising such a strong, sweet boy. When Kyan is back in Bridgton and safely in remission, the Chalmers Insurance Family would love to have you visit us- my work family is praying for you and we are Team Kyan all the way. Much love to you, Bill, and the MacDonald family.

    Dottie

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  15. Hi 😉 I have been following Kyans story, he’s such a strong young man. I couldnt imagine what you guys have been going through, I have been saying many prayers for him… My son Tyler goes to school with ky and asks about him everyday, and can’t wait to see him when he’s able to come back to school 🙂 prayers and xxx

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