Medical Update: Mayo Clinic

12 Dec

Last week was my paperwork – paperchase week.  I sat down and filled out the forms needed for our big trip to Mayo clinic. (Or should I say, looked at all of the questions I couldn’t fill out and checked “unknown”.)

But I could fill out two very easily.

  • How many fruits/vegetables does your child eat a day? (Do not include french fries.)
  • How many times does your child eat french fries a day?

Really!? At Mayo?

We hunted down  all of Cora’s medical records. Our favorite is from a Neurologist talking to our general doctor who said, “As you know, Cora is an absolutely beautiful 5-year-old who….”  Yes, yes she is. 😉 And let me say how hard it was to get them all.  7 months of visits = 2 inches + of papers.

Because our care has transferred to 3 dermatologists in the past 6 months, we’re feeling a little bit like the case that is “the case”.  The hard one.  The one that isn’t easy to solve. (Of course it’s not) The one that causes stress with lack of treatments.  (We’re definitely that case.)

Cora’s cancer is a genetic cancer. There isn’t a cure or a real fix because one of her genes that is responsible for blocking tumor growth does not work properly.  But I’m not OK “no cure”.  It infuriates me.

In the past few days I have been able to get general thoughts on a couple of questions from Dr’s across the country.

Is bone marrow transplant an option?  No.  In situations where bone marrow transplant is an option, a small amount of healthy bone marrow is needed to “heal” the sick bone marrow. In Cora’s case, most, if not all of the marrow would need to be replaced because the sick would “sicken” the healthy.

Is chemo an option?  I found an online medical journal article that states it could be.  There are so few of Cora, we just don’t know.

I spoke with a geneticist who told me that he wanted to do a study that never got funded using a drug they use after organ transplants that has been shown to decrease risk of skin cancer. It’s a carrot.

Ah, a carrot that the doctor at Mayo said today was really just a fake carrot. Not a carrot at all.  But isn’t that what happens when you get opinions from many doctors? Or thoughts from many people? Conflicting ideas and thoughts?

Today we drove 3 1/2 hours one way to sit in an office for an hour and half with one of the top Dermatologists world-wide.  We were told this by multiple people.  He fit the role. Glasses down to the bridge of his nose, spoke with authority, knew everything about everything and called other nationally known doctors by their first names.  His knowledge trumped everything in the room.

We were not rushed, we were allowed to ask any questions we had, he googled while we talked, and often times our questions were answered with, “That’s a good question. We just don’t know yet. There aren’t enough people. Not enough cases.”  He took notes, looked at her skin with cool micro-glasses that he let Cora wear, ordered medical records he needed to have in Cora’s mayo file and left promising contact with more info soon. Hopefully before the end of the month.

We finished our conversation, headed to the medical photography room where little Cora had to have about 30 measuring tape stickers on her body and about 100 pictures taken standing on what looked like what you’d see at JC Penney photography place, but far different.  She posed in various positions so they could photograph every inch of her skin, wearing nothing more than her underwear.  (I hated it. hated, hated, hated it.)

What did we get out of the appointment?  Open doors.  A genius doctor that doesn’t see children has decided that he is going to keep seeing Cora as we need while he reaches out to the #1 world expert in Cora’s condition. He knows him by a first name basis and he is going to see what is happening in a world where the only medicine are not approved for children.  Might she be part of the study that sees the safety and effectiveness of this drug on children?  So many factors to consider before we could even get close to thinking about it.  We also got recommendations to nix what our current Derm wanted to do next as a treatment. (Scraping. Sounds fun, huh? Modern? Not.)

What we didn’t get from this appointment? Answers.  Plans.  A, “Yes mom and dad, I can help you!”, A “This is what you should do this year and here is how we will handle it.”

A carrot, I guess, right?  A real one.  A promise of communication from an internationally-known genius to the top dog medicine creator with a passion for Cora’s future.  That’s a good thing.

But I’m not going to stop searching for an answer.


2 Responses to “Medical Update: Mayo Clinic”

  1. Kangkook December 12, 2012 at 5:03 am #

    I will pray for Cora and your family. Thanks a lot for warm post.

  2. stephanie December 16, 2012 at 3:04 am #

    So hard. I’m glad you got as far as you did, but so wish you got more solid answers. You are such a great advocate for Cora’s health!!

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