Dear Lexi,
Well, three weeks has passed since your surgery and you are doing SO MUCH BETTER! I am so shocked by the amount of change we have seen in you. Changes we weren’t even expecting to happen.
Daddy took you to your post op appointment about a week ago. Remember the swelling that we took you to the Dr over? Guess what? I was correct. Not swelling. At this point I am not sure why doctors even question when I tell them something is abnormal. Apparently, after surgery your body can actually form what is best described as an internal blister, a really big one as we found out. The surgeon told us not to do anything for it unless it got worse in which case they would need to drain it. Yours started going away on its own. Now, it is almost gone!
Your incision site looks fantastic! I don’t know what I was expecting. Maybe a scar that was thick and mangled looking with the stitch marks on either side? Nope, not yours. It looks like your flesh was cut with the tiniest of blades and glued shut maybe slightly different than it was before. All you see is a thin pink line. I was SO afraid to let you have a real bath. Dad was taking you in the shower but a few days ago I broke down and let you take a long fun play bath with Libby. She was so happy to have her bathing buddy back. The surgeon told me your incision was water tight in 24 hours and I could give you a bath in a week but I was so sure you were just going to peel apart at the seam if I did. Yes, I am a scardy cat, but only because I love you so much.
Two days ago I got an email from the oncologist saying that you need to be seen next week. She also gave me the time line for the next two years of scans. You will need a MRI at 2, 4, 6, 12, 18 & 24 months post op, and the one a year after that for several years. I was told before that the anesthesia that they have to give you for these scans is very dangerous for kids under the age of 2. We are going to talk about it at the appointment next week and see if maybe we can space them out a little bit further just so we don’t expose you to possible brain damage. It is so hard as a parent in this situation to know what is best for you. If we don’t do the scans the cancer could come back without us knowing and if we do the scans we could inadvertently cause brain damage. Neither sounds like a chance I want to take so we will see what ideas the doctor has.
The changes… This part makes me want to jump up and down and scream and shout with pure joy! Libby has always been the happier baby. Just something we had grown to accept. Chalked it up to “personality differences”. Boy were we wrong! I think that you were uncomfortable or in pain from the tumor inside of you. It took a couple weeks of recovery for you to feel better, but now you are so much happier than you have ever been! I have always loved you, but you are making me fall more in love every day. You have had such a great personality change. You are developing the biggest sense of humor. You started teasing and joking around which you never did before. Your laughter that used to be a very sparse sound now constantly fills the house. My heart is overjoyed and overflowing with the love and happiness you and your siblings bring me. I think I am the luckiest mom alive. I love you to the moon and back, infinity times infinity. Keep fighting baby girl!
XOXO,
Mom
12/28/2013


How happy and Pleased I am to read this most precious update on Lexi, but also all of you as a family. What wonderful precious memories you are building. I am so sorry that Lexi had to endure such pain, but God has seen to give her to parents who will love and see her through all of this. My Prayers continue for all of you. Thanks for keeping all of us posted and please continue. Lots of hugs
Thank you Mary. We have been so blessed.