...was what they told my daddy when he was a little boy in Sunday School. I just wish I knew what "the right thing" is.
We met with the doc from Prestigious Cancer Hospital today. His plan was dramatically less aggressive, and he had good reasons for it. The Husband and I walked out thinking, hey, this is the way to go.
But I stewed and stewed and researched and researched all day. Because if we choose wrong ...
So, I'm using this space to dump my brain. Feel free to ignore and come back another day when I'm, I don't know, posting recipes or something.
Big Children's Hospital: where we've been treated the last two years. We like 'em.
Plan: Radiation + high powered chemo. Doxorubicin, Vincristine, Cytoxan, Etoposide. Chemo every week in the office, then every third week, chemo in the hospital, for 3 -5 days.
The Big Risk: Etoposide can, in rare cases, cause leukemia. And she could relapse.
Doctor: Very experienced with Wilms' Tumor. Very familiar with her case.
Prestigious Cancer Hospital: where LE's Big Brother is a Big Poohbah. (But not a doctor.) We'd be treated like royalty there.
Plan: Radiation + less aggressive chemo, including 2 she's already received. Doxorubicin, Vincristine, Dactinomycin. Chemo every week in office, no hospitalizations.
The Big Risk: Not high powered enough. And she's already taken 2 of them. She could relapse.
Doctor: Very experienced with pediatric cancer. Not very familiar with her case yet.
I'm leaning toward Big Children's Hospital. The doctor talked to The Husband for half an hour today, explaining every step of his decision-making. It all seemed very well-thought-out.
"I wish one of the doctors were a mustache-twirling villain," I told BFF-DRE. "Then we'd know."
But they're both good people, good doctors.
For me, it comes down to: Big Children's Hospital Doctor knows the most about Wilms'. And knows the most about LW.
For The Husband, it comes down to: if the results were bad, which choice, had I made it, would allow me to live with myself?
We agreed ... in that situation, if we had chosen to go with Prestigious Cancer Hospital and it went south, we'd feel that we had chosen wrongly, that we'd wimped out.
With the other choice, we'd feel that given the information we had at the time, we made the best decision we knew to make.
Decision feels mostly made. But we're going to call Big Children's doc and ask him his thoughts about the risk of secondary leukemia in the morning.
Spirit of Life, come unto me ...
And bring wisdom. Please.
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I just want you to know I'm thinking about all of you. I don't have any insight or comfort. Don't know if it helps or hurts to hear someone living in "normal" to say, "I can't begin to understand what you are going through," but that's all I have to offer right now. That and tears of hope.
LE,
I just want to say from the bottom of my parental (as opposed to ministerial) heart that I don't know how you do it.
At least with addiction, I know that I cannot make the choices that will cure it. My son has to do that and my job is just to love, support, and tempt him toward his better self. It seems easy in comparison with what you face.
I hope you know that you have people praying for you all over the place. I hope LW can feel that she is one loved little girl. I hope we all look back on this as "the journey" of a lifetime--a long, wonderful, life.
LE, my troubles seem so inconsequential compared to the choices you and your family need to make. I'm thinking of you all, a lot.
We--parents--do the best we can. That's all we can do.
I know you are doing the very, very best you can.
Which is all that we can ever ask of each other, or ourselves.
Someone told me once that parenting wasn't for the faint of heart. I thought I understood that. Now, I read your posts and I just ache for you and LW and everyone else. Continuing to hold you & LW in the light, and hoping...
contact Dr. Jeff Dome at Childrens National in DC. Formerly of St Judes - leader in Wilms in the US - he consults on my daughters case - she is treated by Dr. Harris at Tomorrows Childrens Institute at Hackensack University Medical Center (great ped oncologist who runs a great ped cancer program in a great hospital)
Hi, Steve! Yep, already contacted Dr. Dome. He approved the Children's plan ... but also approved the Prestigious plan.
I'm not in your shoes but I think you are processing everything very wisely. Hang in there...
Dearest Lizard Eater (so funny that I do not know any of your real names, although I understand!), I return here all the time to see how you are doing and how LW is doing, and understand all the more why people make casseroles - because it feels like something solid and tangible to be able to do in the face of something that a million casseroles or blog comments or candles lit cannot fix or make better. But, since blog posting and candle lighting and prayers and hopes and sharing to some little degree in your family's amazing and brave and hard and scary journey is all that I can do, I will just keep doing it and hope that, mixed with all the other casseroles and blog comments and prayers and loving-things-done-in-LW's name, it will make some small dent in this amazingly horrible journey that you have to go through again. I am thinking what I will do for LW's book. And wishing that praying hard enough for something would make it happen. In hope and solidarity, Elizabeth
Okay. I've cried and cried and cried about LW...but...Today is a strong day.
My vote is for Big Children's Hospital.
When you fight, you have to fight with everything you've got and everything available to you.
The Heavy Weight Champion doesn't get in the ring and just slap someone silly...he knocks them on their butt!
Having someone familiar with Wilms is what will make the difference, if other complications arise.
And I know you are feeling helpless and a bit lost right now, but you have to force yourself not to second guess yourself, now...or later.
Once you have all the answers and information, you choose what is best and that's all you can do. Second guessing after the fact, serves no purpose but to torment yourself. You have to force yourself to not feed that negativity LE!
I love ya girl, and you are all in my thoughts, every day!!!
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