Thursday, February 7, 2013

It's My Birthday: A Better Idea Of Things To Come

It's my birthday! And my baby slept through the night in honor of mommy turning 34 (9 hours and counting). But I'll post more about all the birthday madness and shenanigans after the weekend. Right now, I have Spencer information to unload before I forget it all. There's so much to know that it's confusing people. I'm trying to keep it as condensed and easy to digest as possible.

I will first tell you that I'm eating a Brownie Batter donut from Dunkin' and it's life-changing. They're only around for February so don't miss out! Phoebe, because of you, I'm going to gain 300 pounds this month. Sheeesh. Now back to your regularly scheduled Spencer update...

Phoebe and I took Spencer to the Oncology clinic yesterday so they could take a look at his platelets. They've dropped again, from about 67 to 54, but they're not low enough to need a transfusion. WHEW! His infection-fighting white blood cells are actually over 1,000 which they haven't been in weeks so that's a small improvement. Despite a little swelling in his liver, he looks great overall. He always does. Energy is high, no symptoms besides a little bruising, good appetite, and growing. He's gained 2 pounds over the last month. For him, that's awesome!

They are discussing his case in a panel today that they have every Thursday. It's a way to bounce around new cases and get info from other doctors about their experiences. Unless that yields something or the pathologist sees something outrageous, it looks like our plan for now will be as follows:

We're going to continue to go to the clinic every other week for a few weeks. They'll keep monitoring his blood as they have been. He will probably have another bone marrow biopsy in 4 weeks (which is way better than having regular biopsies like we have regular clinic visits...it was brought up as an option, YUCK). They want to make sure that the abnormal cells don't miraculously disappear. They said it was still a possibility, but that the chances were very slim. The doctor he spends the most time with said this will officially become Leukemia, it's just a matter of when. It will be AML when it meets the criteria, in case you are curious to read more about that.

Basically, they're giving him a little time. Time to get bigger, stronger, and even a little older. Kids who are a little bit bigger handle treatment better, that just makes sense. And kids who are a little bit older can communicate better (and Spencer already has issues with expressive speech). Even kids who can't talk yet, if they're a little bit older, can point to where there is pain or express that they don't like how their food tastes, etc. They can participate more in the treatment whic is helpful.

And giving Spencer a little time isn't going to hurt anything. Like I've said, it won't affect the type of chemo or the outcome. They said yesterday that this WILL cure him. They don't have any doubts. This type of Leukemia is highly sensitive to the chemo so it gets knocked out. Unfortunately, the treatment is typically 6-7 months. But if there's a good side to ANY of this, he does NOT have to stay in the hospital the whole time like we thought! He'll be admitted for about 3-4 days (or possibly a little longer if there's an issue), and even then, he's not having treatment the WHOLE time. They just keep him there to monitor, deal with pain, discomfort, etc. We then get to go HOME! For 28 days!!!! Then back to the hospital, then home, then hospital...and so on and so on.

This is GREAT news if there was going to be any great news. A few days in the hospital here and there won't disrupt his life (or selfishly, ours) too much. When he's home, if he's feeling up to it, he can continue all this therapies and regular activities. I won't have to worry about not getting to spend time with my Sully Moose or my husband, and I won't miss out on nearly as much work as I had thought! I can continue on with school as planned. And Spencer's life will be able to remain as close to normal as possible which is the MOST IMPORTANT. This is great.

While not being great at all. He's still going to have chemo. He's still going to have cancer! But his team is confident he will be cured. I have to keep reminding myself of that. And while he'll experience side effects (fatigue, nausea, and his hair will most likely fall out...maybe it's time to give him that mohawk), nothing should be permanent. When this is all said and done, he'll just move on with his life. We all will.

While we were there, an Endocrinologist stopped by, helping us eliminate an appointment from his schedule. She said his numbers look great so there's no need to tweak his medications. He's already on what she called "a baby dose, even for a baby", so that's good news, too. His thyroid isn't totally wacky. But as she said, that's the least of his worries.

So that's the update as of now. I'll be waiting for a phone call from his doc after the panel discusses my boy and the pathologist looks at his slide. If nothing dramatic happens, we'll be back at the clinic on the 20th. Tonight I will celebrate with some cocktails and some of my favorite broads at my favorite bar. I know the situation in general doesn't involve celebrating but some of the weight was lifted off my shoulders for sure. And a big thanks to Phee-Bizzle for keeping me company and nudging me to ask some of the questions I had. If I didn't, I wouldn't have gotten the relief that I did!

3 comments:

  1. There is so much good news in all that you found out! Hurrah! Now go have a donut :)

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  2. Hope, faith and encouragement being sent your way from Florida. You are all in my prayers! Love, love, love from Phoebe's tat dad....jim

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