Tuesday, August 10, 2010

Updates on Lily...



I'm going to shift some of the conversation over to the blog so that those that aren't on Facebook can get the info. I'll post in both places after today. I'm going to start with the beginning posts and add what we've added the last few days...

If you want to add me on Facebook, the link is: http://www.facebook.com/MikeFisher
If you want to add Liz on Facebook, the link is: http://www.facebook.com/ElizabethBFisher
(You may have to be logged into Facebook to access our pages to add us.)

The Updates:

Saturday, August 7th:

Things are calm right now.

We are at Children's Hospital in Buffalo and Lily is playing and watching movies and acting pretty normal. She had ice cream for breakfast and has watched Princess movies all day.

Liz took her to the doctor yesterday for the continued vomiting and a new symptom of a wobbly gait. They scheduled a CT scan for next Tuesday. After the doctor visit, Lily just wasn't right, and Liz called the doctor back and decided she should go to the ER. The went ahead and did the CT Scan in the ER and found the tumor in the mid-part of her brain.

They've scheduled an MRI for Monday and surgery on Tuesday. The neurologist said that there are 20 different scenarios at this point, and we're hoping for whatever the easiest one will be. Obviously, we're worried about whether it's benign or malignant, but the doctors are more concerned about what the tumor is doing in her head. If it's separate from the brain tissue, we're all good. If it's all wrapped up around stuff, that's the bigger problem for removal.

We don't have a lot of answers at this point, but should know more after the MRI on Monday.

Liz and I both thank you all so much for all of your thoughts and prayers. You can reach us by text, twitter or facebook, but we can't talk on the phone in the ICU.

We'll update again soon as we find out more information...

Monday, August 9th:

Lily went in for the MRI about 7:30. They had to do anesthesia first, then the imaging was to start around 8:00. Hopefully, we'll have some answers in a little while.

Meanwhile--there are several other kids here in the Pediatric ICU--they could use a few prayers too. There's a little baby beside us just snoring away...in the midst of all of the chaos--it's the sweetest sound...



Lily had her MRI this morning. The used general anesthetic and she whimpered some, but did okay. She woke up before they took the breathing tube out, but they were able to get it out and she's doing fine now.

She's having sips of juice and waiting for around 3:00 when she can have a cupcake.

The MRI only gave us a little more information. We don't know much more about the tumor except where it is located. While it's not really good or bad news, they have decided not to remove it yet. She will still have surgery tomorrow and they are going to biopsy the tumor and relieve the some of the pressure from the fluid in her brain.

After that, we wait some more. It will take a week or so to get the biopsy results back and determine the best course of treatment.

We are trying not to think about anything other than right now. We've been playing the "what-if" game since we found out on Friday...and we are trying to stop doing that.

We appreciate all the prayers and support and don't know how in the world we would be able to handle this without each and every one of you. Thank you so much!

-Mike and Liz and Lily


Again, thank you everyone for today's support! It means so much to us to know that all of you are out there keeping watch over us from afar. We still don't know much about our destination, but we're on this road, whether we like it or not.



Tuesday, August 10th:

OK. We're out of surgery. The docs did what they set out to do. We saw Lily briefly and are waiting for her to get settled. Now we wait some more--Should have pathology report early next week.


She's laughing.
There's no better sound to hear.
We are back in the room with her in the ICU. Her little head is wrapped but she's saying "Boo" & telling us that her head hurts a little.
Everything went as planned & the surgeon was able to relieve the pressure in her brain, hopefully eliminating her symptoms for now. We'll deal with what have to deal with later, but for now,
We're just breathing. And smiling.

3 comments:

Toony said...

I'm here, there and everywhere watching for updates!

Kelly Burgess said...

Thank you so much for keeping us informed! It is very generous of you. Lily is an amazing little girl! I am so happy to hear that she is laughing, and telling her daddy what to do (to stop wiggling her toes). Sounds like everything is back to normal, except for the hospital part. Love you guys!

Anonymous said...

Love the pics of Lilly with the cupcake and the book...I think we should all send cupcakes and books to the hospital and you can share them with all the kiddos!