Our local mall had a Princess Party today and we went with our friends Sarah, Reagan, and Sydney. (It's Sydney's birthday today!) We did crafts and got balloon animals and took pictures with all of the Princesses! We had a REALLY good time!
Saturday, August 28, 2010
Friday, August 27, 2010
Wednesday, August 25, 2010
Treatment Options...
We talked the doctors again today.
They got together as a group to decide the best course of treatment for Lily. While we didn't get the news we were hoping for, what we got is not awful.
We go back in a couple of weeks for a follow up CT Scan, with a follow up MRI in November. Between now and then, we wait. Depending on what the November MRI shows, we will either continue waiting or start the next step, which will be surgery to remove as much of the tumor as possible. The most likely scenario is that we will watch the tumor for awhile before surgery is necessary. She will have MRI's every three months for awhile, but if the tumor doesn't grow, the MRI's will decrease in frequency.
While we're glad that we are not jumping right into surgery or chemo, this scenario is kind of maddening. The tumor stays for now, and we have to just deal with it.
We continue to appreciate all of the prayers and support and kindness from all of you. You have all made a huge difference in how we've been able to cope with things throughout this arduous journey.
-Mike and Liz and Lily
PS. We did go to the dentist today for the toothache she's been complaining of. She got a clean bill of health from the dentist, as well as a new toothbrush and a bright pink plastic dinosaur. The dentist thinks the toothache is coming from either sinus trouble or perhaps the tooth being nicked during intubation when she was under anesthesia.
First Time At Dentist
We went to the dentist today for the first time! No cavities! Nice looking teeth, and Lily fell in love with Dr. Piazza, who she is calling Dr. Pizza.
Tuesday, August 24, 2010
Bath Baby
Lily looked cute after her bath. You can see the scar at her hairline. She's been complaining of a toothache so we are going to the dentist tomorrow. We're wondering if a tooth may have gotten chipped during the anesthesia procedure or if maybe a baby molar is coming in.
Found a note on my car!
Lily, with help from Grandma and Granddad, left a note on my car while I was working. That was nice.
Monday, August 23, 2010
Making cupcakes!
Lily and I made cupcakes today at her request. She doesn't really eat the cake but loves the icing! We are having a good week so far and are waiting to hear more from the doctors this week.
Friday, August 20, 2010
Reading the Paper
Thursday, August 19, 2010
Game Room in the Hospital!
Even though we're back in the hospital, we're having a BLAST today! Lily is playing with toys and we had fun playing air hockey. Then we found a train set. Those of you who know us know about the perpetual trauma that is Barnes and Nobles and their train set area. Once we go in, we can never leave. I pretty much thinking the same scenario is setting up here. There's a little boy playing with the trains, and when Lily walked up, he said, "Mine." Lily responded, "We share." Then she said to me, "Little boy will share with me." It wasn't a request. It was a demand. She's in a pretty good mood today! (And that keeps me in one too!)
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Back in the hospital...
Well, we're back at the hospital. Lily's incision is leaking a little spinal fluid. That by itself is not a horrible thing, but if it gets infected, it could get inside her head. They are keeping her for a night or two to keep an eye on it.
Wednesday, August 18, 2010
Presents from friends!
Lily got several boxes in the mail today and we took some pictures. She was VERY happy!
Tuesday, August 17, 2010
Pathology Report
We talked to the doctor today and found out that the tumor is benign. The preliminary reports last week were pointing in this direction, but we wanted to wait until we had proof from the report before put our eggs in that basket.
While that is good news, we're still just beginning this journey. We have to wait until the end of next week for the committee to meet and determine our next step and course of treatment. The tumor is not in a good place, regardless of what it is. It's wrapped around a couple of important structures and removal is dangerous and not our best option right now. There is a possibility of chemotherapy, and there's also a chance that they will do nothing and monitor with frequent MRI's until she's older.
The whole "until she's older" part is all we really care about. They can't tell us anything yet about longevity except that this is not the life threatening situation we thought we were in this time last week.
After we talked to the doctor today, we had to go back down to the hospital for another CT Scan. There is a small leakage of spinal fluid in her brain, which will eventually be re-absorbed, but is not great for the moment. There are a couple of places where it is collecting and they may have to go in and put an additional stitch in the incision if it continues to build up and/or leak.
We feel a great sense of relief knowing that the tumor is benign and slow growing, but are still apprehensive about whatever treatment options we are going to be dealing with. We know that the power of prayer works and we thank all of you that have helped us so far with your prayers, support, and presence. We sincerely appreciate our circle of friends and family!
We know enough now, I think, to be able to sleep. We can tackle anything that comes our way as long as Lily stays with us.
-Mike, Liz, and Lily
Monday, August 16, 2010
Not a lot happening right now...
We're still playing the waiting game.
Lily has been fairly vibrant since we brought her home on Saturday. She's still eating a lot, but we think much of that is due to the steroid. She's feeling better and walking better and looking better. She still gets tired easily and is lying around a lot, sleeping well at night and is enjoying playing games and drawing and sticking stickers on everything that stands still.
We're hoping that the doctors call within the next couple of days to let us know what we're dealing with and what our treatment options are. The waiting is agonizing but having her home and not in the hospital is definitely a plus!
Thanks to you all for your continued support and prayers. It has been so much easier to deal with this monster knowing that you all are out there.
-Mike and Liz and Lily
Sunday, August 15, 2010
A Few More Pics...
Our friends from Kannapolis, Bernard and Kristen, stopped in to see us today! We really miss them and were really glad to be able to see them this week especially!
Grandma and Grandad brought Lily a new (and loud!) Tyrannosaur! 
Our friends from across the street, Reagan and Sydney, came over to hang out and chat tonight!Saturday, August 14, 2010
Back to ABNORMAL!
She's been home for like six seconds and is already back to crazy baby mode! (Thank God!)
WE'RE HOME!
We still won't know anything until next week...but this week's hurdles are over and dealt with. We don't know what the road looks like from here, but we're home, and sleepy, and comfortable, and wonderful. I've never been so happy to watch Dora the Flippin' Explorer on our TV!
Friday, August 13, 2010
Friday night...
Some new pictures. Lily had a great day today. We're still in intensive care, but only because there isn't a room available upstairs. Hopefully we'll move tonight or tomorrow morning.She got to see some friends today...Joanne, and Karen and John came to visit, and she took a walk today. It's the first time she's been walking since last Friday!
She's been eating everything in sight and has been in a pretty happy mood!
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