odd time signatures

Living with Leukemia

I first heard about Phil Burns on Twitter about 2 weeks ago when someone re-twittered his most recent post saying that his daughter, Serenity, might have leukemia. And she does. Acute lymphoblastic leukemia. Fortunately, A.L.L. is the more curable type of leukemia, but it involves 2 1/2 years of treatment.

They’re on day 16, and it’s already a haul. Did I mention that Phil and his wife have 8 kids? Here’s a little bit of what they’re dealing with:

So, I cancelled my fantasy of maybe being able to actually go do something with Adria Friday night and got on the phone and started making arrangements for the other kids while I drove home, Adria packed our bags. I got home and we loaded up Serenity and headed to the E.R.. She really didn’t look good. By the time we got to the ER at Utah Valley, the oncologist had already been on the phone with Triage and they knew we were coming. As we pulled up, I had my little speech prepared to keep us out of the waiting room (neutropenic means her neutrophil (a type of white blood cells) counts are extremely low and she has little to no immunity):

“This is Serenity Burns, she was recently diagnosed with Acute Lymphocytic Leukemia, she is neutropenic and is symptomatic of requiring an immediate blood transfusion.”

I spouted that a few times, feeling a bit like Jane from Firefly in the episode where they break into the hospital. Anyway, they sent us into a room to check us in and the first question out of the RN’s mouth after hearing my little speech is:

“Has she recently been on any medications”

I was stunned for a minute, couldn’t think of anything to respond with that wasn’t just rude. After a second I said without further hesitation, ”well, with recently being diagnosed with Leukemia, she is now on chemo, zofran, dexamethazine, prevacid, oxycodin, PEG injections, sephra on mon and tues, and has recently had about a dozen blood transfusions and as many platelet transfusions – but that really hasn’t changed in the last few days.”

Then it was her turn to be stunned and ask me to repeat the list slowly. hehe.

So, in addition to being a web entrepreneur working to launch a new Web 2.0 app, raising 8 kids, and trying to have a life somewhere in there, the whole family is now struggling with a new and very scary paradigm — knowing that the youngest child is facing a disease that can be deadly and can be cured, and the line to walk toward a cure is a very thin, carefully balanced combination of medication, monitoring and love.

Friends have started a fundraising effort to help his family with Serenity’s medical bills. Even with insurance, it’s not a walk in the park.

It feels kind of like a startup company, which I’ve been doing for the last 18 months anyway, it’s familiar territory and I feel kind of comfortable here. Just like a startup, Serenity’s plan involves risk – a lot of risk. But there’s a huge reward and it’s very much worth time, effort and money. Going into this we have no idea how much money it’s going to cost but it’s got to be done and we’ll figure that out as we go – just like an early stage startup. The point is, I feel like I can do this, I’ve been doing it for a long time.

Please consider a donation if possible, and if not, please send good thoughts, prayers, and hope Serenity’s way.

Serenity’s website is here, and you can follow Phil on Twitter here.

Photo credit: Phil Burns

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