I must come clean. In the deep recesses of my heart and brain, I too, was/am waiting for the day when things will be better. Amongst all the muck and grime, I had a moment of joy that was awfully brilliant and it shifted my head and heart. On Tuesday, between sleeping, puking and generally feeling like crap, Gregory decided he wanted to ride a tricycle. He enthusiastically hopped on the tricycle and took two spins around the unit. I was internally bursting at the seems during this moment. Just a few days prior, he wasn’t even bearing weight on his feet. Tuesday he decided to go for a ride. This was not a corner turned. This was a moment. By Wednesday he wanted nothing to do with the tricycle and was too weak to even stand on his own. As is my MO, I’m always looking for “The Next”………. Waiting for it to “Get Better”. It dawned on me that these moments of happiness are not sustainable. They will happen when they happen. Which means I need to enjoy them AS THEY ARE HAPPENING and be glad that they happen. Instead of constanly wanting it to be Better or happen Again.
Gregory has been sleeping a ton. Monday night it was 8:30pm-11:00am. Tuesday it was 1:00am to 3:00pm. He’s currently sacked out so we will see if this trend continues. We started G Tube feeds Tuesday night around 8:00 and by 5:30 in the morning he was having belly pain and heaved huge at 6:30. Wednesday we started feeds at 6:00 and he has yet to have noticable belly pain and hasn’t heaved. He is incredibly weak, though. When he stands he shakes and can’t takes steps without assistance. He is going to need some time to rebuild his strength. This gut episode has wiped. him. out. We have not bee able to determine the exact cause of all this. Doc suspects a viral infection. We just cannot find it. Why? You ask. Well, it’s tied to his symptoms and his blood work. Which is a double edged sword. Gregory’s Hematocrit has made a significant drop. His white count is also down, quite a bit. His platelets are continuing a slow downward spiral. The content of his White cells is all over the place, too. Gregory’s leukemia, as Doc puts it, is a slow burning disease. It smolders. It can be active and you might not know about it for some time. Gregory’s current counts could be related to a viral infection, bone marrow failure or relapse. Or it could totally be just his body recovering from surgery/belly issues and it’s trying to correct itself and since his marrow is not fully formed, it’s going to take a while for it to bounce back. Needless to say, on Sunday doc said we are not leaving here without a Bone Marrow Aspirate. You can (well at least some of you) imagine what kind of a tailspin that puts us all in. I do not know when we will do this. When I talked to doc about it, yesterday, I was “that” mom. A bone marrow aspirate at this time is not an emergent issue. I will NOT put Gregory through on until he is feeling markedly better. I will NOT do an out-patient/slam-bam/in & out BMA. Due to Gregory’s sedation needs, they have to put him out with heavier duty agents then is typically used for BMA’s. When he came out of the sedation for his G Tube, he experienced some scary respiratory issues. I’m NOT taking any chances. Gregory’s over all health is still incredibly fragile. He does NOT need another set back. I pretty much spoke all this to Dr Reynolds. He took it very well and agreed. So. We won’t have a date for the BMA until Gregory starts to feel better and can recover some of his strength.
Speaking of being “That” mom. The Tacrolimus issue worked itself out. The morning after I posted about it, they tested his Tacro levels. (The amount of Tacro in his blood.) It came back much higher than we want it to be. Therefore……. They took him off the 24 hour infusion and put him back on 3x/day oral. IV problem solved. I honestly believe that The Universe knew that this was a battle I wasn’t going to find resolution in. I believe that me making a stink about it would have just frustrated me. By putting my fears and concerns out there, The Universe took care of what it could. Part of Tuesdays “Tricycle Happiness” was also supported by the lightness of the load that I carry. I forget that writing really helps me to shed some tension. Writing is not a purge, for me. The word purge signifies that something has been expelled and does not exist in me, anymore. No matter how often I write, this is still a part of me. Writing though, allows me to spread the burden, put my heart and my head in your trusting selves and allow myself to share the burden. Not that my intention is to worry all of you or expect you to carry us through this. It’s something I can’t quite put into words. It’s knowing that when I call/run into any of you, hopefully I won’t have to re-hash most of this and you can look me in the eye, knowingly. With an unspoken “I’ve got it.” Writing is also a release of my “stuff” to the greater unknown. Putting it out there and seeing what happens. ‘Cause I certainly can’t do this by myself, but I’m far too proud to ask for anything I might really need.
Yesterday I did something I haven’t done in over eight months. Something I probably shouldn’t have done, but I wanted to, so I did it. Larry came down yesterday afternoon and suggest I be the one to pick up Curtis and AnnMarie from school. So I did. The kids stay after school, until 3:30, for Study Club. It’s just an extra 30 minutes of time in the class room. Time when it’s quiet. I pulled up to the school at 3:00, ran into the grocery store (which is across the street) grabbed a few essentials, dropped them in the car and headed across the street. I stood there on the sidewalk, staring at the school, stuffing my anxiety. Trying not to think about the germ infested petri dish that is an elementary school. Walking onto campus and seeing familiar faces, at this point, is so challenging. Watching their faces as they glance at me, really look at me and register who it is. Watching the emotions flutter across their face. Shock: “Is that who I think it is?” Joy: “Things are OK. She’s here!” Realization: “Crap. What do I say now?” Then there’s the fact that things are not OK, yet here I am. Curtis and AnnMarie even had that moment. I kid you not. Both of them had the exact same reaction to me walking into their classrooms. They each looked up at me, SHOCK. JOY, REALIZATION. Except their realization took them to a different place. Both of them, the first words out of the mouths: “Have you moved back home?” With all the hope and joy that comes with this very loaded question. Of course I had to say no and they had to settle for just a Pick-Up. They were troopers, though and powered right through it. Seeing Paula and Mrs Bowman was hard, too. Despite the fact that I probably shouldn’t have, they recieved *fierce squeeze*s. Something all parties needed.
Today is a new day. My ability to even make that statement is big. Today I can make that statement. This moment I can make that statement. I’m OK with that, too. Ask me in an hour and it could be radically different. I’m OK with that. For now. For this moment. No more waiting for corner’s to be turned. No more wanting “this moment” to be sustainable. Relapse, Bone Marrow Failure and Death are just too big to allow for anything else. I have imagined writing “The Relapse Entry”. I have envisioned “What I would do if Gregory died.”. I already have made the decision that Gregory will not be buried. He will be cremated and in our home. I will not be tied to a gravesite. I will have the ability to take him with me, wherever I go. I have envisioned a second transplant. I have “written” his obituary. All of these things and more, race through my mind. Unbidden. I do not ask them to show their ugly mugs. They simply exist. I do let them run their course, have their head. Hoping that those moments are short lived by doing so. Which is why I might not be able to make the above statements in an hour. This is the reality.
Yet. This moment, this day. It’s new. ’til later. Gotta jet.