Monday, August 04, 2008

Appointment Update

Well, it certainly has been an information-filled couple of days.

As you know, we met with Dr. Zage at MD Anderson last Thursday. He was just terrific and really gave us some direction. We felt so good leaving there and if we lived in Houston, that would be our first choice of care for sure.

Armed with new information and ready for a discussion this morning with our doctors, we left for the appointment.

Dr. Goldman said that Dr. Zage had called him after we left on Thursday, which we really appreciated.

There was much discussion, chemo vs surgery vs careful watching. None seem like such a great option, to be honest. The problem with the chemo is that it may cause damage her heart, among other things. It could also change the tumor type to where it will not spontaneously go away on its own as some nb tumors do. Surgery is risky for many reasons generally, but to up the ante on this surgery, the tumor is located on the side of the heart. Careful watching could be fine except for, again, the location of the tumor which is, as Dr. Goldman showed me on today's xray hugging the spine. Which also means that there is a shot that it might not be able to be removed ANYWAY!

Oh, and her catecholamines were normal today. But, as Dr. Goldman showed me, the were rising each month within normal ranges. We are right at the edge of normal so next time, we'll probably be high. What does that mean? Well, it just means we have a bit of time to make the right decision for Eva, but not too much time.

Bottom line:
We are scheduling a CT for three weeks from now. At that time, we will take a look at our options.

In the meantime, Dr. Goldman is sending Eva's file to Dr. Brian Kushner at Sloan-Kettering just to get his opinion. Dr. Kushner is THE MAN when it comes to neuroblastoma. Of the 600 kids diagnosed with nb a year, his clinic sees 300 of them.

Also, he is meeting with the radiologist and the surgeons to discuss our next move.

Obviously, as I have mentioned, the hardest part is the fact that there does not seem to be a clear cut position. But, I am comforted by both Dr. Zage and Dr. Goldman who have made me feel better about Eva's outlook.

One thing that my mother pointed out. She said that from speaking with me, she feels very comforted by the fact that at every level, each doctor we seem to be coming in contact with, has put Eva first and foremost. There does not seem to be any ego overwhelming the situation. I believe that she is absolutely right. We are truly lucky in that regard.

Jon and I are ok. We're both worried for Eva but feel ok about the direction of her treatment. I think that in some ways, I am have a bit of advantage over Jon when dealing with this situation. When I was dealing with my own leukemia, you learn that things change every minute with cancer. Every plan is not written in pencil, it seems to be written in sand and just before high tide. I think that has been hard for Jon but, God bless him, he's doing very well.

And the beat goes on.


Anonymous said...

this one made me sad and i don't know why. well, partly. just thinking about my own mom and how we're all adults trying to deal with everything. and eva's just a baby.

but kids handle stuff like this better than we do b/c their thinking minds aren't factors. i know she's going to be just fine.

i ache for you, though, and wish i could help you deal with some of the stress. we're all so effin' helpless. :( BUT ... if i could do something i would. :)

Nan and Gid said...

This is so tough. I so admire your spirit during all of this. You really are a remarkable person. I am so glad you have this blog to keep us up to date. I wish we lived closer so that we could be more helpful and see you guys. We would do anything to help. Our thoughts and prayers are with you.

Carolyn Wing said...

We see Dr. Kushner in NY and his treatment plan is the ONLY plan that put Laura in remission when chemo and bmt did not. I am praying for you. Hugs and prayers. Carolyn Wing grandma to Laura Stage IV neurolastoma page name LauraVDB

Anonymous said...

Continuing to think of you and your family. And so happy that Eva has amazing medical care. Blessings on you all.

...deb said...

That last one was from ...deb.

Nicole said...

Think about you a lot, Kristi . . . as often as I think about my own cousin who has osteosarcoma and has undergone 2 surgeries and months of chemo. You really do have a great attitude and seem to be doing all the right things. Eva is blessed to have such great parents! See you at St. James in a few weeks!