Favorite Hannah Picture

Favorite Hannah Picture
"Yes, the park!"

Hannah Ballerina

Hannah Ballerina

Play Time

Play Time
"Go super fast!"

Hannah's Room

Hannah's Room

Happier Hannah

Happier Hannah

Hannah sleeping 4-13-10

Hannah sleeping 4-13-10

Preschool Friend's Art

Preschool Friend's Art
Yeah! Friends!

Wednesday, February 2, 2011

A Big Decision To Make

I have had some news to share for about a week now. I have a couple of acceptable reasons for being late with this. I am drowning in work right now (not such a bad problem to have), the news is extremely medically detailed, and the real problem; it is good news wrapped in very hard shell. It is good news that also makes me sad. I feel like cancer has come around and punched me in the face.

Here are the facts. I will do my best to make this readable. :-)

The treatment plan Hannah is following is a clinical trial study. It is specially designed for children who were originally standard risk, then didn't respond to chemo. Most patients have zero cancer left at 29 days into Induction, the first phase of treatment. Obviously, Hannah did not. She is now on the high risk arm of that study. That plan was taken from a trial designed for kids who were high risk from the start. Age and presenting white blood count are the main determining factors for this group.

That high risk study was cancelled last week in favor of another study for high risk kids due to "far superior results". COG, the group of oncologists who make the studies, are considering it unethical to let the other group continue on, while there is a treatment plan available that is working so well. The study plan that works differs from ours in that they use a dramatically higher dose of the chemo drug methotrexate, HD Mtx for short, vs our study which uses the capizzi method of an escalating lower dose of Mtx. In our study, if your child's ANC was at 750 or higher, during the Interim Maintenance phase, they would receive increasingly higher doses, not to exceed 350mg. In the HD Mtx study during the IM phase, they receive 5000 mg of methotrexate. It is making a huge difference in their incidence of relapse.

In order to give that dose of methotrexate, without it being lethally toxic, patients are admitted to the hopspital for 3 to 4 days, hooked up to a round the clock IV and given a "rescue" drug shortly after the huge dose of Mtx. Methotrexate is a folic acid blocker. The rescue drug, Leucovorin, is a type of folinic acid, that can help the bone marrow and the stomach from the toxic effects of methotexate. It works because it is a form of tetrahydrofolate, the end result of folic acid in our bodies, that does not require the conversion action of dihydrofolate reductase, which Mtx blocks. Ok, that is confusing. It will have to stay for now due to time reasons. I will edit this paragraph later, promise.

Hannah is already finished with both phases of IM and heading into Delayed Intensification 2. What COG is recommending, is that we consider adding a HD Mtx phase to begin when DI2 ends. The choice is ours. Keep her on the plan that has all the relapses and hope she is not one of them or try the HD Mtx route with all it many and horrific possible side effects. Not to mention her quality of life this summer. Going from the DI2 right into eight weeks of HD Mtx is going to be more awful than I have words for. However, the potential alternative to is just unthinkable.

In the end we are lucky to have the opportunity to move to a study that is working. I will have to work out the mushy emo reactions separate from what is really best for Hannah's long term survival. It is heavy to say the least.


  1. JUST another perspective that might help you think about it differently... is there really any kind of chemo that is anything less than awful? ((( hugs ))) and prayers for you & yours.

  2. Man Carrie...thats a hard one!!! I will continue to pray for your strength and Hannah too. Love you and call me if you wanna vent I am always here!

  3. Sometimes it seems like you never get a chance to take a breath and not have to make all these huge decisions, almost impossible decisions. I wish there was something I knew, or some way I could help you, beyond reading your blog then writing some obivious comment. Whatever choice you make will be the right one, because it will be made from love and hope.

  4. Sorry I got a bit lost there - I'm one of those very fortunately people who have not had to understand this minefield. Carrie this is so tough on you, I just can't imagine. I'm just writing to wish you all the best really, and to say I'm thinking of you.

  5. Hi Carrie,

    I read this and it made my head spin. I don't know how someone absorbs so much medical knowledge so quickly. Other than you just HAVE to, cause you are the Mom.

    I know you will do what's best for Hannah. It sounds like a daunting decision that nobody wants to have to make.

    Call me, email me...love you. Liz

  6. What a shocking position to be put in. That is so so hard for you. Let it sit with you for awhile and you will make the right decision. You probably already know what that is but somketimes we just need the time to come to terms with it before we acknowledge it to ourselves. I hope you are getting lots of hugs and support right now. x

  7. Rock and hard place, you guys are there too much. I wish I could find that magic wand to change it..

    I think that if you can put the options into words that Hannah can understand she will help you make this decision. Yes, she is only a child, but empowering her with choice in the battle for her life is best.

  8. Carrie, wow. I'm amazed at how you articulated all the medical jargon and risks so clearly. All the more so given how very difficult this is for you and your family. I just thought that at this difficult crossroads, it may be of some comfort to know how much people are with you and standing behind you. - Your friends from the West Seattle YMCA (Cat, Gabriel's mom)

  9. I can't imagine what it's like to face a choice like this (or really any of what you have been through over the last year). Know that you and Hannah are always in my thoughts and prayers. Always. Hugs. Kathy

  10. goodness! and I thought my dilemma at Costco was hard today; "do I get Swiffer wipes or use a different mopping solution?" -seriously.
    I can't imagine having to make these decisions and yet you face them on a daily basis. I will pray for you. For wisdom and clear direction and a good, healthy, hopeful outcome.

    We also still do want to come see Hannah, its just that horrid time of year where someone is ALWAYS sick. Right now its Kara - she has a virus :(

  11. Happy thought- Miss Alice looks adorable in your pic.

    I know you have a lot to decide and I wish they were of a nature that weren't so heavy. With all my ignorance I think I know the direction I'd take but can't even pretend to know what I'm talking about.

    She will beat this. Of that I am sure. And with you as her mother I have no doubt she has the best team on her side. Xoxo

  12. I just wanted to say how much I admire you for your courage. My hope for you is to have all the strength and clarity you need to fight well for Hannah. You’re not alone – all your friends are there rooting for you too. For both of you.

  13. gosh, such complicated and difficult paths.
    will be thinking of you and especially of Hannah, it does sound promising, if terribly complicated.

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