My Fighter and the Little Family Clown

Okay I know that I have been super slacking on my updates lately so we have a lot of catching up to do! Lily is officially in Delayed Intensification (DI). This is pretty much how it sounds, its a very intense and harsh round of chemo. Its done over two 29 day spreads. The first 29 days started with another lumbar puncture and two IV chemos. That was last Wednesday. One of the chemos that she got is extremely nauseating and for the first time since her blood transfusions, she actually got sick and threw up from chemo. Its pretty amazing that she hasn't had any other reactions or complications thus far. She is amazing. We also started steroids again. Its a week on, week off, week on, week off and then we are done with steroids until maintenance! YAY!! Friday she got another chemo that is really nasty. It has a whole list of incredibly scary possible side affects or complications but she did great. In fact we went back to the Dr. today and her blood counts actually look really amazing! Other than a little swollen liver (totally expected), and some itchy skin from the steroids, Lily is doing great. We finished this week of steroids today so the itching should go away. She goes back next Tuesday for more chemo and then a week after that just to check blood counts and then we wait. This is the delay. We wont start the next set of 29 days until her blood counts are back up to normal. This could be one week, or it could be 3 weeks. I don't have major details on the next phase but I know it starts with a planned over night stay in the hospital.

Honestly though, other than this being an absolute nightmare of a 5 months that no parent should ever have to go through, it really hasn't been that bad. I read a lot of blogs and Facebook posts of other families/parents fighting this same disease with kids not much older than Lily, and some of the side affects of these drugs can be horrific. Other than the ridiculous side affects of the steroids, Lily has gotten a total of one ulcer on her arm, which was just basically like a little scratch, and has thrown up twice. Of course some days she is extra tired and her legs hurt a lot some days but really, how much better can it get!! (knock on wood) I really am feeling so blessed that she has been able to deal so well with everything that I just have to say it out loud. I know I complain a lot about things sometimes because the everyday struggle is real and still there, and she is still really sick. But she still has hair and the Lily I know still totally shines through. That is a huge accomplishment for my little fighter, and I have no doubt the prayers are working.

Tomorrow happens to be a big day for Makinlee as she has her FIRST BIRTHDAY! We are just shocked at how fast this year has gone. With all the attention that Lily has been getting lately I am excited to just try and focus my attention on my little bug. She is so funny and just has the best personality. She is always playing games with me and doing things to be funny. She is the family jokester for sure. She says some words, Momma, Daddy, done, ouch, uh-oh, Lily, and a few more that she will spit out every now and then. We are so blessed with our beautiful family. Having children is nothing like I thought it would but everything I hoped it would be. This is a week to celebrate our little accomplishments, high blood counts, and making it one full year of life. So far its been a pretty good week.