Tuesday, March 29, 2011

Finishing Strong

I've actually stolen this entry from Tyler's blog, Mandy posted this recently. Tyler's father, Scott has designed a shirt in memory of Tyler, and is selling them to raise funds for Leukemia research. As most of you know, research in this field is very much has had a personal impact to me, and I hope you'll consider purchasing a shirt in support to help find not only new treatments, but a cure one day.

From Tyler's blog -

If you attended Tyler's memorial service, you may have heard that Scott (Tyler's father) was designing a t-shirt to sell as a fundraiser in Tyler's memory.  The shirts are in and I have posted a picture of the images on the shirt for you above.

They are bright green (like our beloved Sounders colors) and have a silhouetted image of Tyler running on the front.  The back of the t-shirt has a picture of Tyler with the quote "I have fought the good fight. I have finished the race. I have kept the faith."

If you would like to order a t-shirt, please contact Scott Bledsoe at (206) 546-2629.  If you can't call him, you may also try e-mailing him at mycaga@hotmail.com, but you will be more likely to catch him by phone. 
In addition, if you want you can simply contact me with a shirt size and I'll work with Scott to get you the shirt. Suggested donation is $20 for the shirt.

Saturday, March 26, 2011

18 Month PCR results...

Yeah, no kidding, it's already 18th months on Ponatinib. Still staying on 60 mg, and side effects are manageable. My blood counts were steady compared to 3 months ago, and my PCR came back with "Weak Positive" again. This is the 3rd weak positive result I've had in 4.5 months, so either the decline is just happening much slower, or possibly I have bottomed out there. While it would be wonderful to be in PCRU (Undetectable), I won't complain about holding steady at weak positive either.

The tests that show the cytogenetics are still outstanding, they can take up to 3 weeks so I won't know for another week probably.

Wednesday, March 2, 2011

Alexander Tyler Loland turned 2 today...

Yep, our little boy turned 2, and he's quickly developing his own personality and giving us new insight into his thinking and what makes him tick every day. It was just a low key birthday party with the 4 of us, and Christian trying to 'help' Alex opening every present....oh, to be 4 again :)

What I realize sitting here, after they both have fallen asleep, probably dreaming about the cake and hoping for left overs for breakfast tomorrow, is that I have never known Alex without me having CML. When we found out about my diagnosis, Cynthia was 6 months pregnant. In fact, since Christian is so young, he will also never remember me without CML in my life.

That poses a challenge. One day, we will have to have the 'conversation'. I often think about how that will be, hoping that by then it's so far in my rear view mirror that it's more a conversation at the dinner table going something like this...."Hey Dad, I broke the car again, could I borrow yours"..."Sure son, as long as you have a $1000 deposit and note from your teacher that you're a good student...oh, and by the way, I have CML, have had it since you were born, no big deal...and don't mess with my preset radio stations again ! "....I really hope it's that simply, but I have to take a day at a time.

Tyler's passing is still impacting me a lot...It probably will for as long as I can look forward. Alex is named after Tyler, for all the right reasons...I sometimes try to look at him and hoping to see if he's grow up to have some of those traits. The numbers guy, the athlete, the kind and gentle person who graced us with his presence....I keep hoping....One thing he does have that they share in common, is a totally contagious smile...I look at Alex and suddenly a hard day, isn't such a bad day after all...Tyler could do that, he'd make you forget about the troubles around you, and focus in on the important and real stuff in life, and the not so important stuff....

So what does all this has to do with CML ? It does and it doesn't....CML is part of me, it was part of Tyler, but it's not who we are or were. I am reminded that between now and the conversation with our sons, it's about the non-CML part of life...That is what they need from me.....