Aside from that wonderful news, Niki saw her Hematologist yesterday and thankfully did NOT get referred for an endoscopy...yet. Niki's lovely Hematologist sent a referral for her to see a GI doctor. (Side note: In an effort to maintain the MD's privacy, from now on I'll refer to Niki's Hematologist as "Dr. Awesome". Why "Awesome"? Well, because she is!) Anyhoo, we're going to consult with the GI doc to figure out what Niki's treatment plan will be. Maybe Niki won't need a scope after all and that's just fine by me. YAY!
Dr. Awesome decided that it was also time to increase Niki's NovoSeven dose on the account that her weight changed so drastically in the last month. Who knows, maybe the increase will help prevent her GI bleeding! Effective today, Niki is back on factor every other day. YES! The pharmacy will be genuinely thrilled. John gave Niki's first dose of 160mcg today and we're skipping her dose tomorrow. Things are looking better already. That's a-okay with me...and Niki of course. :)
In other news....I don't believe I've ever mentioned that Niki is a LadyBug.
The original readers that followed me to this blog may remember that I wrote this post about ladybugs shortly after Ethan's passing. Who would have guessed that ladybugs would hold a whole new meaning for me less than one year later. Niki has a link to ladybugs just like Ethan did. BTW - I still see real ladybugs from time to time. :)
Aside from Ethan and Niki, we've only "met" two people (both women) with FVII Deficiency. One of these women wrote the LadyBug link I posted above and she is also the Chairperson of the organization. (I've talked to her through e-mail and she is wonderful!) Anyway, I learned of her (and exsitence of LadyBugs) from a NovoSeven rep I met at HFNC's "Family Information Day" back in March. The drug rep takes care of the westcoast and he told me that Niki is youngest person using the drug specifically for FVII Deficiency.
My special little LadyBug. :)
FVII Deficiency is rare, so the NovoSeven rep only knew of 3 people living on the westcoast (including Niki) with this disorder. It is my understanding that NovoSeven was created to help people with Hemophilia A or B who developed inhibitors to their factor. NovoSeven is the only drug that is FDA approved to be used for Factor VII Deficiency. We learned at Family Information Day that a few other companies are in the process of creating recombinant FVII as well. But shoot...that's still years in the making! I've also read some pretty exciting news about another factor manufacturer that is working with a biotech company right here in South San Francisco! I saw a press release dated for 6/30/09! I LOVE NovoSeven, but I fear the idea that it is the ONLY drug available for Niki's condition. What happens if some catastrophe causes NovoSeven to be in short supply or unavailable through my health insurance? I doubt it, but still. It's nice to know other products will be available in the future. Gosh, we are so fortunate to live in this day and age! Medical technology is definitely on Niki's side.
But I digress...back to the LadyBugs!
This wonderful organization in Washington supports women with bleeding disorders (WWBDs) like Niki. Bleeding disorders are already rare, but it is even rarer to be a WWBD. Hemophilia (deficiencies in FVIII and FIX) is linked to the X chromosome making it more common to be a male with a bleeding disorder. Women typically don't get diagnosed until it is too late. So, we feel so fortunate to have met two "WWBDs" with FVII Deficiency!
When I look back at the "ladybug connection", I can't help but think that someone above was trying to tell me something. Was it God? Was it Ethan? Was it both? Maybe. Perhaps the ladybugs I saw everywhere were my son's way of communicating with me. Niki probably wouldn't be here if it weren't for Ethan. She came from his death and lived because of his diagnosis. Ethan the Angel. :)
I hope she loves and cherishes him as much as we do.
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