Wednesday, January 13, 2016

MEET EZRA: AND HE MOVED ON



Yesterday:
Josh scrambled to leave work after a meeting and circled the parking lot in the pouring rain, unable to find a parking spot at the hospital. Meanwhile, they called Ezra's name. You never know who you're going to get at the lab...and at first I had a moment of panic when I saw her face, but after sorting through the catalog of faces in my memory, I remembered, she got him with one stick the last time, she's one of the good ones. At this point Ezra knows what's going on: "No shot, no shot!" I have Judah with me too. He is pretty oblivious, but I want to be sure he doesn't see the needle go into Ezra's arm, or the blood. He's seen a lot of things with Ezra...massive amounts of vomit and horrible incisions, but he's never seen a blood draw. By this point Ezra is screaming and gagging himself. I'm simultaneously praying and hoping for them to get him in one stick and for him not to throw up on me. Judah is spinning in the chair in the corner, blissfully unaware. Thank God. Josh is still looking for a parking spot, but we've got to get this over with so I tell them to go ahead. It's amazing how much I used to not be able to handle blood. I'm sure I've told the story before about my years as a waitress, how there were a few times I nearly passed out when I had to carry out plates with too-rare meat. And now I look for the blood. I'm desperate for that moment right after they poke him when I can see the blood coming into the tube. And then I let out a quick sigh of relief, and I squeeze his little legs and arm to keep him still. I whisper, I sing, I plead. It feels like an eternity, but I try to convince him that's it's almost over.

But is it almost over? Is this ever going to be over?

The rain was relentless this morning. And at times, that's how this journey with Noonan Syndrome feels...so relentless. Sometimes he never seems to catch a break. And when he does catch a break, and when we take that moment to celebrate, it's becoming harder not to wonder if it is only the calm before the storm.

Josh finally made it in right as we were walking out of the lab. Ezra stuck out his left forearm (we call his left arm his "money arm" - somewhere along the way we figured out that that arm has the best odds as far as blood work and IV's go) and told his daddy, "Owie." He started to cry a little again. Josh picked him up and he buried his head in his shoulder for a moment. I reminded him that he could color for a few minutes. And he pulled himself up onto a chair at the table with the crayons. And he moved on.
Oh Ezra, you teach me so much about life. You weather storm after storm...and you just move on.

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

***UPDATE!!!***


Not long after I clicked the button to publish this original post, we got some great news: Ezra's blood from yesterday is NORMAL!! As much as I have been holding onto the hope that this was all just a *weird Noonan Syndrome thing,* I was also bracing myself for another bone marrow biopsy this week or next after my last conversation with Ezra's oncologist. Thankfully, after speaking with some experts and with these results and the marrow results, she has come to the decision that the abnormal stuff over the last couple months is normal for Ezra. Translation: it doesn't seem to be a recurrence of leukemia!!!!! It's taken me a while to post this this afternoon because I was scared to celebrate prematurely, but this is truly great news. We're not 100% out of the woods. Ezra's spleen is still enlarged, so we will continue to monitor it and get labs done every six months...but as long as none of those nasty JMML symptoms pop up again, we're free to go back to weathering our other storms (that seem a lot less scary than cancer right now!). So thankful for everyone's prayers and kind words this morning...I feel like you completely expedited this rainbow after a very difficult day yesterday and all the uncertainty of the last couple months. So much love and gratitude from the Parker family.



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