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!

Friday, February 25, 2011

Showing Cancer the Door


Big pink panther from Rob @ Owens Corning, one of our insulation vendors.


I believe my co-worker, Barb, summed up the decision the best. "Do you want to get hit hard? Or do you want to get hit harder?"

At the end of January we were presented with a choice to make regarding Hannah's treatment. It felt exactly like what Barb had said.

So after almost a month of research, crying, praying, facing down demons called cancer, and a bit more research, it came to me.

I want to show cancer the door.

We are going the high dose methotrexate route.

Just in case the post I wrote on this previously made no sense (I know, it didn't), here is a review of the situation.

The treatment Hannah's plan was based on; cancelled. The plan Hannah was on used an escalating lower dose of methotrexate during the Interim Maintenance, IM, phases. The second plan used, instead, a very high dose of methotrexate, HD Mtx, during the IM phases.

Turns out, the HD Mtx had results so far superior that the doctors who design these treatment plans, COG, considered it unethical to let our kiddos continue on the less successful study.

The HD Mtx study was increasing the event free survival rates by 6.5%. For us, that is a very real, very big number. Hannah had just finished her last phase of IM using the escalating low doses of Mtx. Her oncologist presented us with a choice. Finish her treatment plan as is, or add the HD Mtx to the end of her next phase.

It seems like a no-brainer. Stay on the study where the kids are relapsing, and hope she isn't one of them, or move to the high dose treatment that seems to be saving lives. One second decison, right?

Wrong. There were so many factors to consider. For time and space reasons I am only going to discuss the most important ones. First, the difference in dosing is significant. The highest amount of Mtx she had before was around 320 and that made her sick! The high dose amount would be 5000mg. She would need to be in the hospital for three to four days to receive it so they could monitor her and give her IV fluids. To help with the toxicity of this drug, Hannah would be given a rescue drug, Leucovoen, around 42 hours after the methotrexate.

The side effects of methotrexate range from uncomfortable to unthinkable. Mouth sores top the list of common. I think we could handle that. There is the usual list; diarrhea, hair loss, skin rashes, headache, backache. After that; pancytopenia, liver damage, renal failure, kidney damage, limb weakness, loss of memory, behavioural and cognitive issues to name a few.

The real concern, is that this chemo drug crosses the blood brain barrier. Neurotoxicity, is the side effect that keeps me up. Hannah is so bright, so smart. Annoyingly smart. I see some of temporary memory loss she struggles with already. It breaks your heart. I don't know if I can watch her light dim. To watch her struggle under a fog, with the memory of how she was, how she might have been.

There were other questions. Since we have already been through two IM phases, are we too late? Would this actually make a difference for Hannah? (I was told, it would improve her odds)

Then, I got the email from a friend of mine whose child had relapsed. They are preparing their goodbyes.

Sometimes when I think too much about the side effects I get lost. I don't want any of those things. I forget the fight is against cancer. If Hannah were to relapse, the side effects of high dose methotrexate would be the least of my worries. This is war and I want as big of an arsenal as possible.

We are being given a chance that doesn't happen very often. If this is what it takes to keep cancer out of my baby, then, we move forward. Our summer is going to suck. Hopefully, it will allow us to have many more.

7 comments:

  1. What a hard decision for you to make Carrie but like you said...one hard summer traded for MANY more summer memories together sounds like you have it all together! I have been dealing with a ton of sickness with Luke since he was in the hospital in October....I can't even imagine CANCER! Just seeing my baby sick has rocked my world. You are so strong!!!!! Financially we have been turned upside down due to Luke's medical bills and I know they are in no way close to what you are dealing with!!! Stay strong and I love you all!!!!

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  2. oh gosh, i can't imagine having to make ANY of these decisions!
    I've been praying for you guys and will certainly continue.
    I love what you said at the very end - your summer will suck, but hopefully it will give you many more. What a good outlook.

    When we were all sick in January I found myself thinking "this is so hard! I hate having sick kids - I can't get on with life until they're better. I'm tired of being stuck and confined to our house!" - then it hit me like a ton of bricks - Moms like you deal with this, on a MUCH higher level, ALL the time. 24/7 with no end in sight.
    Needless to say its whipped my atitude into shape many times :-)

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  3. Carrie,

    It sounds like you are doing the right thing for Hannah. You are such a strong Mom. I know it will be tough. You have many people reaching out to support you in anyway they can. If there is anything I can do, please just ask. Even if it's just to bend an ear...or whatever you can think of that I can do.

    I pray that this works for Hannah and kicks cancers @ss to the curb.

    Love you,

    Liz

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  4. Carrie, I'd love to see a post on how you make these decisions.

    I think I"d be paralyzed with over analysis.

    How do you know what to do????

    I have such love for you, and your family.

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  5. I want to hear you and Hannah singing "Forget You!" like Cee-lo to cancer. :) It sounds like you are choosing the option most likely to make that happen.

    We have seen that it took a lot before Hannah's hair came out, perhaps the side effects won't be quite so terrible for her mega strong little body; at least that is what I am going to hope.

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  6. Carrie, thanks for sharing your story with us - I am rooting for Hannah, and I'm going to stay updated on your path to slamming the door in cancers face!

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  7. Hi Carrie, this is the first time I've visited your blog. I just wanted to wish you all the luck in the world with Hannah's treatment. I hope you will have many wonderful summers together. Positive thoughts from people many, many miles away probably don't do much to help,but on the off chance that they do, I am thinking them and sending them to you.

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