February 3, 2010

Scan results

A couple weeks ago Madeleine had an MIBG scan that shows how much of the tumor is still active. She also had her usual urine test. The doctor finally called today to discuss those results. The scan shows that she still has active tumor. Her VMA/HVA numbers are both up a bit from where they have been. VMA is at 32, and was in the 25-31 range for the last four months. HVA is at 41, the highest it's been since April. All of that means that there is still immature tumor, and that it's probably growing a little (as was seen in December's MRI). The doctor is consulting with the specialist in L.A. that we saw over a year ago, and the neurosurgeon. Thankfully no one thinks that chemo is a good idea at this time as maturing tumor does not respond well to chemo. As long as Madeleine isn't having any symptoms (tumor interfering with her ability to walk and move her leg - which so far isn't a problem), surgery to remove it doesn't really make sense right now either.

Except that the tumor may be interfering with her ability to know when to use the bathroom. I know that she is still young, or right about average, for potty training, but I just feel like something isn't right. She really wants to use the potty, but so far hasn't been able to. After explaining my concerns to her doctor we now have an appointment in a couple weeks to see a neuro-oncologist. He will be able to tell if she has sensation in that area or not. If not, surgery might be a good option, because its not like the tumor is ever going to go away, even after it matures. If it's in the way, it will remain in the way until it is removed.

So, I feel disappointed, and frustrated, and a little angry, that we seem to be in the exact same place that we were last year. The tumor is still in the process of maturing (hopefully), and may or may not be causing problems. I know that things could be so much worse. The tumor has not migrated anywhere else, and we are not currently facing chemo, radiation, or surgery. We'll see what the neuro-oncologist and neurosurgeon think, and go from there.

7 comments:

Hope said...

*Hugs*
I'm praying for her and I hope you get some answers soon!

JT said...

We are doubling up on our prayers for your family! We are glad you are listening to your intuition---Madeleine's best advocates!!
Our 2 year old grandson is not in the least interested in the potty... :-)

Bree said...

Having trouble finding the words to express my sadness, frustration, and anger. Know I think of you guys so often and am sending all my positive energy out into the universe for you. I am available to talk, yell, bring cake, throw plates, whatever. xxoo

AM said...

I'm so sorry , Amber. We are, as always, thinking and praying for good news for Maddie. She's such a cute little girl. Thinking of you all...

Ericka said...

effing tumor.

I am, as always, holding you and your family in my thoughts and prayers. At the very least, Mads seems to be resilient and is enjoying life. Love you guys!

Adelaide Morris said...

I'm sending you a huge hug, and praying that this sucker matures and causes no further problems for any of you. Mad is such a smart little girl and I know 3 kids that weren't potty trained until 3 yrs old, so she's still ahead of the game, even just being interested. I'm so sorry you're having to deal with this again Amber :( I am at a loss for words - you and Ryan are so strong and Mad is such a fighter, I just believe with all my heart that it will be ok eventually. You'll mount this hurdle too, and leave its badness behind you and your family. I am still thoroughly convinced that you all are going to win the lottery, Mad will marry a real Prince, and have the happiest lives of anyone in history after all you've been through. <<>>

Susan Dana said...

We're so sorry that you and Ryan are facing this. Please know how much we love you, and don't hesitate to ask us for anything. We think about Madeleine all the time. She's such an amazing little girl and a beautiful blend of the two of you.