Tuesday, February 15, 2011


Recently at the clinic, I had a long conversation with Dr. R.  As you know, I have been concerned about the increased dose of mercaptopurin (6MP), and I had emailed Dr. C with my concerns.  The conversation continued with Dr. R. and I was utterly shocked at what I heard.  Now, I know we are on track and all is going to plan, but I could not even put this down on paper until now, such is the heartbreak at the news.

Sammy was probably born with the Leukemic Clone that was triggered at age five and turned into the leukemia we found growing in his body and filling his chest cavity over a year ago.  The trigger could have been anything…we try not to dwell on “what if?” and just accept it as it is.  It was my understanding, and most peoples’ as far as I can tell, that once the cancer is in remission (undetectable), then we would begin counting up to the five year mark when the patient, Sammy, will be considered “cured”. 

Well, it turns out, “cured” is a matter of semantics.  While we are increasing chemo, adding to the toxicity of Sammy’s treatment in the hopes of getting to therapeutic levels to fight off any chance of relapse, we are never going to get Sammy “cured”.  Leukemia patients are born with the Leukemic Clone and it is a glitch in the system; it cannot be got rid of…. it will stay with him forever. 

I know there is a HUGE chance Sammy will not relapse after five years of remission.  But knowing he will always carry the clone scares the hell out of me.  That’s just me… I am a born worrier… but there it is. 

Later... I just put Sam to bed with our customary snuggle and chat.   He commented that a cold is bad (we both have one), but cancer is worse than that!  "Still," he added philosophically, "there are people who are much worse off than me, because they have things that never go away."  I will never tell him what I know.  And I love, beyond words, his optimism despite his daily battles.  


  1. Sam sounds like a really really brave kid.....*hugs*

  2. Oh, bless him.

    Of course you’re a worrier, Katy, who wouldn’t be? That’s love for you. Give him (and yourself) a HUGE hug from me x

  3. "Cancer is worse that that." Well, that puts things in perspective. Out of the mouths of babes....

    Sammy must be the bravest kid. And the wisest. When I was a little girl, my best friend across the street got cancer. I used to sit with her in the hospital. We would play on days she felt up to it. Other days, we would just sit and watch TV or just sit. I remember sometimes she would just come out with these wise thoughts and I would be amazed. Like all of a sudden she would shift from being a kid to being a sage.

    You are a brave mom. I admire you so much.

  4. Thanks everyone...having a really bad day...will blog it later when I'm feeling more sane.

  5. In my lifetime I have seen impressive progress and new, highly remarkable medications for cancer, as well as other disorders, that did not exist in years past. I have also seen miracles of faith and love. Never discount the strength of your love for Sammy and your faith in his ability to remain strong and fight. While he is holding strong, I pray science will continue to find medical miracles as well.
    Hugs to you all. xoxo

  6. Lisa, you are so right....I lost a friend to leukemia at when I was in 7th grade...it became the disease I feared most of all...I'd panic when I got pains in my legs, it was that bad. The progress that has been made since then is incredible and the only thing that kept me sane upon hearing my son had my worst nightmare. I now know there is much worse out there (sadly), and we really do have a very treatable cancer.


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