Tuesday, September 22, 2009

Home. Do we have answers? Not sure...

We were discharged this afternoon after completion on the EEG and after the MRI report came back. I am so stupid tired that I am just going to make this very quick, unfortunately I can't make it to the point.

Here's what we know:

The bizarre bloodwork spike....
The docs feel this could be indicative of a seizure and the bodies stress response to it.

The EEG was normal, which I am told decreases, but does not rule out seizures.

The MRI was essentially stable. Extensive myelin vaucoulization, left parietal
lobe still noted that enhances with contrast, bilateral optic gliomas
still noted with intraorbital components.

The CT did note the myelin vaucoulization, as well as noting the left parietal lesion.

Thing about the two radiology studies, the CT did pick up the left parietal lobe area, that coupled with the fact that it is enhancing on MRI makes it almost definitely a structural mass, meaning a 2nd tumor.

What happened on Sunday behaved very much like a seizure or like the
events back in 2005 that were never diagnosed. We searched for a year for an answer to those episodes. We went to Dallas for a doctor. We went to Birmingham, AL for a doctor. We spent countless hours in doctors offices and inpatient in the hospital. And no one could ever figure them out. It was heartbreaking and incredibly debilitating to Mandy. They were happening several times a week at the worst point. Eventually the rule became, as long as she wasn't unconscious for more than 30 minutes, don't bother going to the ER. They didn't know what to do to help her. We hit 29 minutes once. It was pure hell. And the longest 29 minutes of my life.

As for Sunday, she was perfectly fine before the episode and fine within several hours after, and has not had another episode since. However, frankly, we are not optimistic that another one won't occur. Given her history, the doctors certainly aren't optimistic that it was a one time event either, and were very honest about that. I was sent home with the eerily familiar instructions of 2005, "Call us when it happens again." They were not certain they were seizures, but were not certain they were not either. They did not want to do anything further at this point as far as treatment goes for the potential seizures, or not.

When I got home I called her regular neurologist and gave him the run down of test results. He has been her neurologist since 2003 or 4...I can't remember for sure, but a long time. He was her primary through all the uncertainty back in 2005. He was 110% certain that Sunday's event was a seizure. The convincing factor for him? The crazy spike in white count and ANC in the bloodwork. He is so sure he was ready to call in a prescription for seizure meds right that minute.

I also spoke with my friend, who was also Mandy's geneticist back many moons ago when we still needed a geneticist. I tease her that she is a one stop shop for me as she happens to be married to a neurologist. She concurred that she was certain it was a seizure.

So, what to do? Seizure meds or not to seizure meds? We are thinking on that.

The fact that her head turned to the right during the episode on Sunday and that the area in the left parietal is almost now 100% certain to be a second tumor does concern me greatly. The left side of the brain controls the right side of the body. So,a head turn to the right would stem from the left side of the brain.

She only has this week and next week left for chemo and then she is done. For now.

We have to remove the chemo to know if that area will do anything. We can't leave her on it indefinitely. I get that. And I agree. But, to take her off chemo, especially with this development scares the ever loving crap outta me. When we remove the subduing factor of chemo will that tumor take off and grow like crazy? No one knows.

That, among other reasons is why we are so careful about how we present this "end of chemo" to her. It's a break. We hope the break last a long time, forever even. But, we have to temper that with a degree of realism.

It probably won't.

The fact is, Mandy has neurofibromatosis. She lacks a tumor suppressor gene. Her body doesn't know any better now not to grow a tumor than it did before. The optic glioma is still there and now this 2nd tumor is there. And with the addition of the potential seizures..... it's a chemo break. I just hope and pray a break is the right thing to do. And that it lasts.

And now, I am beyond exhausted. I am not even entirely sure that this post is the least bit coherent. If not, I apologize. If you have a question I didn't answer or I didn't answer coherently, feel free to ask. But, in the meantime, I think I have amassed a total of 4 hours sleep since Saturday night. So, I am going to bed. Have to be up at 5 to get two kids to school and one to chemo. Ronnie comes home on Friday. Zachary starts his audition process for the 5th grade musical tomorrow. He desperately wants a big role. Send him some good mojo, if you would. Alannah had seatiing auditions at her youth orchestra last night, that she actually managed to make it to, due to some wonderful friends. Good mojo for her too. It is so hard to have our family scattered to the winds like that. I was so happy to be able to hug all three of my kids tonight. They have been worried and scared, but rise to so much more of a challenge than they should ever have to. They are amazing kids, all three of them and we are so blessed to have them.

A million thanks to a million people for all the love and prayers and help with Alannah and Zachary and food and visits and and and the list goes on and on. We are oh so blessed to have you all and so incredibly grateful.

Goodnight and

Love to all~


Joanne said...

Glad you and the kids are all home together...I know you are looking forward to Friday when Ronnie comes home and you will all be together. I will be keeping you all in my prayers. Thnx for the update tonight... xoxo

smacknee said...

You're doing great to keep the other kids' activities going in the midst, with Ronnie traveling. It all sounds overwhelming. I'm sending that audition mojo!