April 30, 2009

Still With The Cancer

My daughter still has cancer.

I've gotten a few emails and comments about something I posted on Facebook, that basically said that Mad still has cancer.

It seems that many people are confused about that. She is out of treatment and is doing very well. Her Hickman line has been removed, which often is the marker for the "end of cancer," so I see how it is confusing.

She still has cancerous tumor in her abdomen and maybe a small amount in her spine. The plan that we are currently following is to let the tumor mature on its own without intervening with chemo or radiation. Every month her urine is tested for chemicals that the tumor puts out, VMA and HVA. She was tested last week and the VMA has risen a bit from the last measurement and is now at 28. The HVA has dropped a bit and is now at 48. These numbers don't really mean anything, except that in a child without neuroblastoma, those numbers are much lower. The HVA and VMA aren't the best indicators as to what is going on with the tumor, but helps the doctors see if there is an overall trend. Urine tests coupled with MRIs give them an even better picture as to whether the tumor is still growing, or not. We have been told to expect the VMA and HVA to rise a bit while the tumor is maturing. The tumor is also expected to grow a bit too. We don't know how long it will take to reach maturity, there really isn't a timeline for that sort of thing. Once it is mature it will no longer cause any problems, won't put out chemicals, and will just be a mass inside her body. It will not be surgically removed unless of course it is getting too close to any organs.

I hope that helps to clear things up a bit. Mad's next MRI is scheduled for May 18th. I'm not looking forward to it, or the preceeding clinic visit. It will be the first clinic visit for labs (blood draw), and MRI that she will have had since the removal of the line. As much as I hated it, the line did make labs and anesthesia so easy. And also, we have never gotten a good MRI report. The tumor is always shown a little bigger than it was the last time. Which I guess is what we expect, but still, I always have hope that it will just be the same instead of growing.

Madeleine is doing very well, she's busy with her swim lessons, gym classes, and frequent trips to the neighborhood park. Today I took her for a five mile run in the stroller (which was somewhat difficult because it's hard for her to sit still for that long), and we came across a new dad walking with his week-old baby. It's hard to imagine that she was ever that small.


Hope said...

I love that picture!!!!
I have been in remission for a long time and still have to get CT scans and bonescans yearly. I don't think testing ever stops.

Amber said...

Hope is right, the testing will never stop. The tumor, on the other hand, will eventually mature and stop growing.

Bree said...

I'm sorry that Madeleine is still going through this. Its not fair. She is such an amazing little girl.

Let me know if you need company on the 18th. I can come sit with you or I'd love to bring you dinner that night. Let me know if that's okay.


Anonymous said...

It looks like Madeleine is enjoying checking out the sand at the beach. Thanks for the update on the medical information.

Love and kisses, NaNa

Susan Dana said...

I'm sorry you're still going through such a harrowing ordeal. Thank you for having the patience to keep us all updated and informed. I have to admit, I was confused about her status. The blog is such a wonderful way to get all the right information about what is going on with her. We loved visiting with Madeleine in San Diego. She's such a fun and beautiful little girl:) I can't wait until she and Sophie can play!