What a weird day. Gregory and I headed to clinic around 9:30 this morning. They were, of course, crazy busy. So we went to the playroom to wait. Gregory sat in my lap and cuddled while we waited. Dr Reynolds was just kinda hanging out, talking to patients. We were not on today's schedule, so he did not know we were coming in. He noticed us and asked how we were doing. I told him and he immediately took us back for an exam. He took one look at Gregory and predicted that his Platelets would be at 8 and his hematocrit would be at 23. He ordered platelets and red blood cells without blood counts. They got going on the order, drew his blood and we took off to run a few errands. About an hour later I get a phone call from the office: (paraphrasing) "No red cells today. Gregory's hematocrit is 30." What? Really? Also, his platelets? They were at 28. We don't transfuse until he hits 20. We did get platelets, though. I feel good about that. What's even better, is that we are back on twice weekly blood counts. I tell you, his demeanor and the petechia had BOTH of us fooled. It still makes me think that SOMETHING is going on. Dr R also order blood cultures. As the day progressed, Gregory's petechia around his right eye turned into a really nasty shiner. The thing is, that I have been vigilant with Gregory. There has been NO rough housing. Everyone has been kept on sooper-dooper-be-careful-with-your-littl
One of the hardest things, lately, has been going to clinic and talking to other families. Don't get me wrong. I LOVE to meet new people. I believe in my heart of hearts in community and the power of the collected voice. It's weird, though, being on the receiving end of sympathy. These families don't know about JMML, but they DO know about Bone Marrow Transplants and all that is entailed. When I meet people, tell them our story, when I get to the BMT part, it's kinda weird. 'Cause THESE families KNOW what chemo looks like, feels like. They know that they are the "lucky" ones. Which is not to say I am jealous. Not even in the least bit. I'm trying to express how your perspective can shift. How in conversations I'll say things like "With "normal" leukemia". Whoa, right? What the hell is "normal" about leukemia, to begin with! I'm not articulating this very well and I know I have folks with "normal" leukemia reading. Know this: your fight is no less than ours. At all. Ever. It is different. I've also come to learn that EVERY fight is different. Even if you have the same diagnosis and circumstances. No two patients are the same.
The only thing we universally have in common, is this: Our children have Cancer. It sucks, it bites, it has to be the worst thing ever. Yet........ we have each other and those that have thankfully, gone before us. We have the collective energy of every single child and family who have been/are going through this. I offer my thanks to the families that I have learned from. The families that I have observed, read about, conversed with. You are all amazing warriors. I feel so honored to have met you. You give me strength, without even knowing it. 'Cause we are all just regular "joe's" (insert election humor here), trying to conquer the unfathomable. It's a club I've NEVER wanted or even thought about becoming a part of. Except we are and I'm grateful for all of you. Especially the ones I've met recently, face-to-face.
We are warriors. Hear us ROAR!
One of the hardest things, lately, has been going to clinic and talking to other families. Don't get me wrong. I LOVE to meet new people. I believe in my heart of hearts in community and the power of the collected voice. It's weird, though, being on the receiving end of sympathy. These families don't know about JMML, but they DO know about Bone Marrow Transplants and all that is entailed. When I meet people, tell them our story, when I get to the BMT part, it's kinda weird. 'Cause THESE families KNOW what chemo looks like, feels like. They know that they are the "lucky" ones. Which is not to say I am jealous. Not even in the least bit. I'm trying to express how your perspective can shift. How in conversations I'll say things like "With "normal" leukemia". Whoa, right? What the hell is "normal" about leukemia, to begin with! I'm not articulating this very well and I know I have folks with "normal" leukemia reading. Know this: your fight is no less than ours. At all. Ever. It is different. I've also come to learn that EVERY fight is different. Even if you have the same diagnosis and circumstances. No two patients are the same.
The only thing we universally have in common, is this: Our children have Cancer. It sucks, it bites, it has to be the worst thing ever. Yet........ we have each other and those that have thankfully, gone before us. We have the collective energy of every single child and family who have been/are going through this. I offer my thanks to the families that I have learned from. The families that I have observed, read about, conversed with. You are all amazing warriors. I feel so honored to have met you. You give me strength, without even knowing it. 'Cause we are all just regular "joe's" (insert election humor here), trying to conquer the unfathomable. It's a club I've NEVER wanted or even thought about becoming a part of. Except we are and I'm grateful for all of you. Especially the ones I've met recently, face-to-face.
We are warriors. Hear us ROAR!
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