Sunday, September 21, 2008

Decisions, decisions....

Well, I have been putting off posting...mostly because we have had some big decisions to make. It didn't become clear until I spent today at church talking with people who have been praying like crazy for Aspen. They just have such objective's nice to get those from folks who aren't emotionally involved in the situation.

So the biopsy came back with ALL NORMAL TISSUE!!!! Hurray!!!! That rules out a huge gamut of horrible things....cancer, cysts of all flavors, necrosis, etc, etc. We actually have two doctors who agree for a change...they think she had an acute case of pancreatitis and that the shrinking of her pancreas is the pancreas just returning to normal size. They now agree that there is NO TUMOR, that the head of the pancreas is very enlarged (still) and that is what we are seeing on the MRIs. But they don't agree on why....

The one thing the biopsy doesn't rule out is Cystic Fibrosis. We have one doctor who says it's definitely what she has and to not get tested for it.. because you will know she has it when it goes full blown if (it ever does...such compassion!). We have anther doctor who says she doesn't have it. And we have a third doctor who says she should be tested and to get ready for a bizarre litany of genetic tests...apparently if it is what she has it could be a mutation of her DNA in just the pancreas, that her DNA could be different in her pancreas than anywhere else in her body (so her pancreas could rob a bank and we wouldn't be able to trace it back to the rest of her...hope it doesn't go on a crime spree).

So in light of the fact that she seems fine right now, that we will be getting an MRI every 3 months for a long time anyway, that if she gets the tests and they are positive that she may not be eligible for insurance as an adult, that if she has CF she may have fertility issues as an adult and they wouldn't be covered, the fact that the savings account is empty, the fact that the bills are still rolling in and genetic testing is barely covered by insurance (we just got April's bills from the Children's Hospital...they're a little behind, but it has allowed us to pay things gradually which is a blessing), that she could get hit by a bus tomorrow (do I really need to know her life expectancy?), that Aspen is done being poked and prodded (she didn't get any immunizations this fall because she didn't think she could follow through on the series for Hep A and HPV), and as Pam says...humanity won't make it until Aspen is 70 the way the world is going. So, in short, we aren't going to get her tested.

I know there are going to be a lot of people who might disagree (like all the grandmas and aunties out there)...that think we need to know. That want to know for themselves. But please know we have agonized over this and sometimes the right choice is the hard's hard to not know, to think that we could get a ferociously unpleasant surprise at any time...but couldn't we anyway? And at some point we have to get on with life, quit wallowing in this mess and just keep living like today might be the last day or hour or minute, because it might be for any of us!


Hidden Jewel said...

Thanks for the update.

Lauri said...

What an example of true Faith. I am so proud of all of you.
God bless you and keep you.

beachbirdie said...

I am glad that you are able to make peace with all this, that is so important! Don't worry about having to defend your choice to *anyone*. You've prayerfully made the choices that are best for *your family*. The Lord bless you, and keep you, and make His face to shine upon you.

I am also so happy to hear that Aspen is feeling good. I pray that will continue.

Alicia, I still have your beautiful magazines. Please let me know when you will be down at the church in the next couple of weeks, I'll get them back to you. I've had them far too long!