Friday, November 2, 2012

The Phone Call: It's Going To Be a Long Week

The phone call I have dreaded, but never really expected to receive, came last night as I was cooking dinner.

Spencer had his Oncology clinic visit on Wednesday and while everything initially looked good (and he, himself, seemed great), the blood smear isn't read for abnormal cells/blasts until the next day. So we got to enjoy our Halloween and then everything fell apart yesterday.

His doc told me that his white blood cell count had dropped a little but that could've been from the clots that ended up on the slide. But one thing that wasn't from the clots was the presence of blasts in his blood. Yep, the abnormal cells are back. I'm not sure for certain what this means besides the fact that it CAN'T be the pre-Leukemic condition that he had. Once that resolves, it's gone.

I have to bring Spencer back into the clinic next Wednesday for more tests. Just another blood draw for now. But while we're there, they will determine if he needs to have a bone marrow biopsy. This is terrifying to me for 2 reasons:

1. I'm fairly certain they get the bone marrow sample from the hip or sternum and that it's extremely painful for adults, let alone 15 month old boys. Thinking about them doing this to my baby makes me physically ill.

2. If they're considering looking at the bone marrow, they're looking for Leukemia. I knew he'd be at risk to get full-blown acute Leukemia but I never thought it would really happen. He's been dealt such a junky card, I just hoped he'd catch a break.

Now of course, they may not even need to do the biopsy. But with the appearance of the blasts...I mean, the fact that they're back is NOT good. You Google "blasts" and all sorts of Leukemia stuff pops up. I don't think (but I don't KNOW) that they can signify anything else. I guess I'll find out on Wednesday. Todd's birthday. 2 years in a row he had a dramatic birthday. Last year, I had surgery to remove a kidney stone, and now this. This is FAR more painful to me.

All of my friends and family, those who know since we only found out 12 hours ago, have been very supportive. They've offered support, thoughts, prayers, vibes, blood products, and bone marrow! While I don't want to get ahead of ourselves, it's nice to have that safety net. And it's also semi-comforting to know that Sully's cord blood is hanging out in Phoenix just in case we ever needed it. Looks like that possibility just became more real.

I wish I knew more and could share more with you but I don't. He is my best pal, the love of my life, and I'm supposed to protect him from hurt. I've had a LOT of friends deal with cancer but with the exception of 1 awesome little dude, they were all adults, better capable of understanding what was happening. And it was difficult and heartbreaking and painful for THEM. If it turns out to be Leukemia...he's not even a year and a half OLD! How can he understand any of this? I don't even understand. All I understand, and I understand it well, is that his pre-Leukemic condition was associated with his other condition and we did that to him. We decided to have a baby and at conception, his genes were what they are. We did this to him.

The doctor is supposed to call today or Monday because they're running a lengthier scan on the blood they took from him this week. But I can't remember what they're looking for...I think it had to do with the white blood cells. Nothing that would help explain the blasts. She brought up the bone marrow biopsy more than once and apologized for calling with "such bad news" twice.

This is bad news.

10 comments:

  1. I'm sorry to hear this news. I read your blog from time to time. All I can do is lend some advice-type support.

    I was born with a rare condition, too. So rare that my folks got blaimed for abusing me because my injuries were happening so spontaneously and frequent. Docs have said it most likely came from my dad's side. I spent my childhood in and out of Cleveland hospitals.

    But, pleassse don't say "we did this to him". You didn't. I'm a grown adult now and I don't blame my parents. I don't blame my dad's genes. How did they know??

    I'm grateful for all of their support...emotional, physical, etc etc. It brought us closer together and we shared a journey most people wouldn't understand.

    If he could vocalize it he'd just say, "Thanks for being there every step of the way. We'll get thru this."

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    1. Thank you for sharing. It's nice to hear from people who know a little about what we're going through.

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  2. I'm crying over the beautiful sentiment shared by your anonymous reader. Nothing I can come up with right now could come close to saying exactly that in a more perfect way.

    I'd do anything for you and for Spencer. Anything. I love you all.

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    1. I know you would. I just can't believe this is happening...

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  3. I'm right there with Phoebe, and offer whatever support I can give to you. Spencer is a lucky, lucky little boy - to have so much love around him; to have such a supportive family; and mostly to have such amazing parents who would turn their world upside down to make his life fantastic and fun. Just be there for him, and the rest of us are "the wind beneath your wings." Children live in the moment, and you make every moment for Spencer extraordinary. I can see that in his photos - he is happy and content. If he could speak, I have no doubt he would tell you just that. When Phoebe was just 5 years old, I sat down to have a Mother-Daughter talk with her about thinking I wasn't doing a great job at parenting. She ended up being the 'adult' in that conversation, and I totally got that my job as a parent was already complete! She understood life and love and reality, and she was happy and content. So is Spencer. He is a gift to everyone he comes in contact with.

    Hugs to you all.
    Phoebe's Mum

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    1. How I wish I could've seen 5 year old Phoebe! Spencer is the best kid...I think that makes it hurt even worse. How can he be so sweet and loved and living and so through such junk? I can't make sense of it right now. But thank you for the support. We all appreciate it.

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  4. i don't even have words right now. BUT you have to know two things: you're not alone in this, and its not your fault. xoxoxo

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    1. I'm glad to not be alone in it. I know that IF he ends up with Leukemia or something else, he'll need his team...mostly to keep his mom's head on. But I still feel like it's our fault. I just feel sick about the whole thing, especially since things were going so well! They mentioned stretching the appts to every 4 months! Sigh...

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  5. Positive vibes your way. Keep your head up, Lacey. You and Todd are the best parents Spencer Lee could have and this is absolutely not your fault. You'll get through this! Sending you love! Jackie and Joe

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    1. Thanks guys. I appreciated it. I think we are going into the clinic tomorrow so we should have a better idea of where things stand. I keep forgetting any if this is going on for a few minutes and BOOM, it hurts all over again.

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