Meet Lexie

WARNING: We have an emergency news update- Due to recent behavioral changes brought on by a high dose of steroids I will now be referring to Lily as her alter ego Lexie. Lexie is very demanding and unwilling to compromise. She needs everything RIGHT NOW!!! Lexie requires that I have at least 3 food options available to her at all times throughout the day or night. If these demands are not met then Lexie starts screaming a series of chants, moans, and groans that can only be described as an ancient mating ritual. This will go on indefinably until Lexie either gets what she wants, decides she wants something else, or, very rarely, falls asleep. Lexie is very territorial and will pounce and attack if she feels threatened so its best to stay away until Lexie is gone which will probably be a good 5-7 days. We will update you more on Lexie as tonight program continues.

For some reason these blog posts are getting harder and harder to write. I don't know if its because we are in a really intense phase of treatment and I'm trying to pretend its not real, or because I feel... nope, that's it. I don't wanna believe its real. With no evidence written down it's not happening right?

I admit I was having fun writing about Lexie but the truth is right now I have one sick baby. She was neutropenic on Tuesday when we went to chemo and in this phase they just continue on treatment anyway. (Normal neutrophils-cells that fight infection, should be around 1400, they usually don't do chemo if her neutrophils are under 500 which is considered neutropenic. Lily was at a 370 and they did chemo anyway. I have to assume at this point that she no crime fighters left.) After chemo on Tuesday I watched the color drain out of her. She took a nap and when she woke up she was as white as a ghost. She has some color back now but still just pale with dark red circles around her eyes. I am glad that we get a break next week. We go in next Thursday to check counts and then if we stay on schedule and her body can produce more neutrophils fast enough we will be planning an over night stay at our favorite resort, St Luke's Children's Hospital around the 25th or 26th of Aug. If she is not ready then, we will wait until she is.

It has taken me until this last week to truly understand how sick she must feel. Mostly right now she just sits or lays down. She will play but she gets worn out fast. The other day I was cleaning and the TV was on. She came up to me and asked me to turn it off so I did. Next thing I realize its quiet so I went to find her and she had randomly made herself a bed on the floor and fell asleep. I was pretty shocked. Not that I blame her but for my 3 year old who hasn't even been sleeping at night, to just lay down and sleep means she is exhausted. She has still been like that ever since. Last night, like the creeper that I am, I just sat and watched her sleep on the couch. There was something contradictory about her face, Peaceful yet troubled at the same time. Its hard to imagine that combination on 3 year old without seeing it.

She will remain on steroids until tomorrow and then she is off of them until maintenance. Despite her being so worn out right now, she really has responded well to treatment so far and we really are lucky that we gone this far with out any big setbacks. The good thing about the steroids are that they do give her a small burst of energy for an hour or two after taking them. We will just continue to fight and stay healthy here and pray for more energy and strength.

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.