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giving blogging a bad name since 2013

CML Is Not Yet Down

I am immensely grateful for the treatment advancement Gleevec represents. I am even more grateful for the percentage of patients who do so well managing their CML using this drug, and experience so few side effects, that they and their caregivers feel comfortable using the word cured. I wish everyone with CML fell into this sub-category, but sadly that isn’t the case. 

I am disappointed they chose to continue using the “onedown” tagline for this.  It’s disheartening to see one of the flagship research facilities, and arguably one of the most prominent researchers in this disease field, make a choice to use the largest advancement in the history of cancer treatment in a way that is misleading at the expense of the most vulnerable members of the CML community.  

I understand the hype and the marketing and the “provocative” campaign angle. It’s just never going to feel good when your patient is the one being marginalized. I completely understand WHY it was done. I just don’t agree with the methods for this particular campaign. It’s a very good cause with an unnecessarily divisive strategy.

I am the caregiver for a CML patient who is a statistical outlier in the worst possible ways. He has more than one mutation. He is unable to achieve a response to standard therapy. He has no matching donor for transplant. The thing I think most people who haven’t walked in our shoes fail to understand is that life as an outlier is very hard, and sometimes the most difficult aspects of it come from interacting with other patients and caregivers.  You fight to be taken seriously, to have your situation understood, to have your patient matter. You struggle with unkind and insensitive comments about whether you’re “doing it wrong” or whether your struggles matter since so many others aren’t experiencing them. You listen to people muse aloud that perhaps your patient wasn’t compliant with their medication therapy. You watch people take for granted the very thing you’ve so desperately prayed for, the result you’ve sold your home, your life and your sanity to try to achieve.  We’ve experienced all of that and more, and we’re not alone. We may be a smaller percentage of the CML patient population than those helped by Gleevec, but “smaller” shouldn’t mean “insignificant”.

I have always been confident we could count on the researchers to understand our place. Our position within the CML data pool. This situation makes it feel like that was a false sense of confidence.

One down or take down?

To my CML friends and anyone else following the saga of ‪#‎takedownonedown that’s been playing out:

Like many others, I too spoke to Dr. Druker last night regarding the onedown.org campaign. I appreciate his efforts to call each individual who complained on social media, and I understand the reasoning behind OHSU running a provocative, attention grabbing campaign. They’re trying to raise a lot of money, and this got a lot of attention.

While I’m grateful for the removal of what I considered the most egregious part of the campaign from the internet and marketing efforts, I’m disappointed in the choice to use what is undoubtedly the largest advancement in the history of cancer treatment in a manner I felt, and still do feel, is misleading at the expense of a vulnerable population. Perhaps CML is manageable for many people, but it isn’t for our family and it isn’t for our friends still dying of the disease.

To me, more than anything else this situation reiterated the need for the CML community to find a unified voice and a way to speak as one. I’ve done advocacy work for CML patient community in many forms, and it’s often hard to get people involved and interested and keep their attention long enough to promote change.

More than anything, I hope this experience opens a dialogue that encourages people to contact The National CML Society and get involved. Our best hope at making CML patient’s lives better comes from banding together and turning‪ #‎onedown into ‪#‎onevoice for the benefit of everyone.

tarynharperwright:

Progress!  (I was making a W sign after reading how to sign “West Side” in a Gawker article, but let’s pretend it was something much cooler than that).

You look fantastic!

LIght it up

It has been said that when a life altering event takes place it is as though our very soul is plunged into darkness. All of a sudden, we no longer know which way to turn. We remain in darkness until someone comes along to help us light the path; we struggle to figure out which way to go and what to do to make things right again on our own. 

This happened to me. To Tyson. To the rest of our family. We were unequipped to handle the immediate aftermath of his leukemia progression on our own. We had entered uncharted territory in pediatric cancer. The specialists we relied on for answers could not even agree on what the next steps were.

If not for the path that was lit for us in part by The National CML Society and its founder Greg Stephens I do not believe we would have found the right combination of people to speak to and things to do so that Tyson could enroll in the clinical trial that ultimately saved him. I remember distinctly the first time I spoke to Greg. He called me. At home. On Christmas Day. He read my email and he knew we were living in darkness, unable to find a way out. 

Greg spent part of his Christmas Day, at the expense of his own family, helping a stranger from Nebraska who could barely stop crying. I cried because it was the first time I knew I found someone who could help us. After weeks of not sleeping and trying to read scientific texts I didn’t understand and find money that wasn’t there for treatments that I didn’t even know how to choose from it was the first time I felt like I might be able to see the faintest of lights at the end of a very long tunnel. He helped me because he knew the darkness we lived in. He lived there once too.

Greg’s Mom Carolyn, who I never met, lost her battle with leukemia the very same day Tyson was diagnosed with the very same type of the very same cancer she had been fighting; in what has become a defining coincidence in my life, her time of death is the very same month, day, year, hour and minute listed on Tyson’s diagnosis report. Amazingly, while our life altering moment caused me to cry on the phone on Christmas Day to a stranger from Birmingham, Greg’s caused him to set out to change the world for patients with leukemia. He is obviously better at handling this whole “life changing moment” thing than I am.


In an effort to take a lesson from my friend, and in an effort to have a certain peace in my heart that comes only from doing the right thing even when you have nothing to gain instead of bitterness and anger over all that has been lost, I also want to change things. For my Son. And other people’s Sons. And any other person who might have the horrifying misfortune of having to walk this same path in the future. Because I know how bad it can be. I know how overwhelming and frustrating and gut wrenching it can be when your insurance won’t pay for the things they are supposed to pay for and you are responsible for life saving medical needs that come at a cost so far beyond your resources you want to laugh out loud, except its not funny at all. 

Please help me do so. It isn’t expensive or time consuming or hard. It takes minutes to write your Representative an email in support of making insurance companies actually pay for the coverage they are selling; it takes seconds to share the information with your own friends. Sponsorships for luminarias are accepted in any amount. All of these might seem like little things. A drop in the bucket. Not worth it because their impact can’t change things. But combined the impact is enormous. Little ripples, when created by many, make big waves. Big waves can change the world.

Visit www.nationalcmlsociety.org/advocacy to learn more.

What Does it Mean to be Aware?

September is an “awareness” trifecta for us. It is CML Awareness Day September 22nd, Leukemia Awareness month is the month of September, and National Childhood Cancer Awareness month is also the month of September.

I’ll confess: I’ve never been completely sold on awareness months/days/etc. I always thought promoting “awareness” as an end point could be the wrong approach. I’m not sure. Of course I want people to be aware of the struggles faced by families of children with cancer, by leukemia patients, by people like my son who face a future that requires more than $100,000 a year in maintenance chemotherapy, forever, to keep a monster at bay that will kill him if not suppressed. I’ve just always worried I guess. What if awareness isn’t the issue? Do people really not know about childhood cancer? I want the outcome to change. I do not want things to FEEL better. I want them to BE better.

It should come as no surprise to people who know me that I’ve always wanted to replace the word ‘awareness’ with ‘advocacy’. So along those lines, I challenge you - If you’re at home, healthy, reading this - if you’re watching your kids play, and they are healthy, and you are reading this: do something this day or this week or this month for the people who are not.

Write your congressmen and women in support of legislation that makes insurance companies take care of their subscribers. Sponsor a luminary. Sign a petition. Visit a children’s hospital. Donate to research. Find a cause and be passionate. Help them change the outcome. Because everyone, including me, thinks it won’t happen to them. It won’t happen to their kids. But sometimes it does. And when it does, it crushes your soul and steals your family’s future and leaves scars that are far deeper than I could ever explain.

If you’re willing, start here: www.nationalcmlsociety.org/advocacy.

I know people like this…I wonder if they got that way from spending too much time with cats?

I know people like this…I wonder if they got that way from spending too much time with cats?

tarynharperwright:

Half dead with disbelief today that my newphew Kellan is ONE.  I call him Fat Baby exclusively.  His feet are so fat that Bizzy had to special order his shoes.  I love looking at his bread dough ankles puffing out of his Fat Baby shoes.  
He has also perfected the “You amuse me with your immaturity” look towards me.  He’s already advanced beyond my sense of humor.
Love love love him.

That face! How did you hide him from me anyway? It hasn’t been a year since I’ve visited and yet I’ve not met this baby.

tarynharperwright:

Half dead with disbelief today that my newphew Kellan is ONE.  I call him Fat Baby exclusively.  His feet are so fat that Bizzy had to special order his shoes.  I love looking at his bread dough ankles puffing out of his Fat Baby shoes.  

He has also perfected the “You amuse me with your immaturity” look towards me.  He’s already advanced beyond my sense of humor.

Love love love him.

That face! How did you hide him from me anyway? It hasn’t been a year since I’ve visited and yet I’ve not met this baby.

Live IS good! What a great summer. Sad to see it go :)