It came with a book to explain what each bead represented. A black one for a poke. A long one for his broviac line. Red ones, yellow ones, big fancy ones for major hurdles and glow-in-the-dark ones for radiation treatments.
Every week Trish meticulously counts every bead-worthy thing that's happened and hands a sheet to a nurse, who dutifully finds them for her.
As you can imagine, the beads number in the hundreds, if not the thousands. The hospital actually switched companies they do their bead program through this spring; the old set of beads measured 16 feet long and now he's on a new one which is coming up on 10 feet.
On Tuesday he got nine more beads, getting another MRI, lumbar puncture, more bone marrow biopsies and samples drawn. The results were discouraging - the leukemia is up to 30 per cent of his bone marrow. Without treatment he'd be dead in a few months.
The "last chance" chemotherapy began Thursday. He'll get a last dose of T cells on Tuesday. Whether he gets more glow-in-the-dark beads for the still-uncertain chance of leukemia in his brain will be decided sometime next week as well.
They'll also decide whether he gets to come home to Medicine Hat for possibly the last time. We of course would love that, but the danger of GVHD symptoms could be too great to allow it. We will go along with whatever the doctors recommend.
Today, there was a special bead handed out. One for courage, perseverance, love, bravery and so much more. One that represents sacrifice and strength beyond anyone's imagination. One that means so much more than the rest.
It's a little metal acorn. Dominic already has one.
This one was given to Trish.
With no string to lace it on to, she put it on her bracelet. The bracelet with the word hope inscribed on it.
There is no person more deserving.
There is. It's you. Because, and I speak from experience here, she couldn't have done it and continue to do it without you. Her sacrifice and strength is yours, too. I hope you get something even better than an acorn, though. I hope this last-ditch chemo gives you and Trish and Dom what you all deserve.
ReplyDeleteMy heart melts each time I read your updates........know that you are always in my prayers.
ReplyDeleteI read your blog faithfully .......the heartfelt love you pour into it touches me every single time.My son(age) 20 was diagnosed with a rare genetic illness this past January....an although we differ as he is not an infant and I have had 20 years with him,I do know where your hearts are and some of the pain you are feeling.His future is uncertain as well. The advice that is given to me always is stay strong,love him while you have him,cherish each and every moment and always be there for one another.You,Trish and little Dom are in my thoughts and prayers.Stay strong for that little man.
ReplyDeleteEverything that is done in the world is done by hope.
Martin Luther
Although I don't know you and your family, I've followed your story and as I read your updates, my heart also aches for you, Trish and sweet little Dominic. My thoughts and prayers are with you and I'm hoping that this last attempt at treatment provides the opportunity for a new and healthy life for the three of you. A big hug to that beautiful little boy and sending more strength your way.
ReplyDeleteKate
I can feel the love and am hoping for the best outcome for little Dom. There is always hope. Even though we haven't met, your spirit is so strong and your story is so touching that I feel like I do...you all are in my thoughts and strongest well wishes.
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