Thank you

We have had two really long days. I was going to write a post last night but I fell asleep before I was able to get on the computer. Tuesday was truly an amazing day! Brylee was visited by three amazing women, Miss Utah, Snow White, and Cinderella. These women were willing to take time out of their day to come meet my amazing little girl. Brylee was super shy while they were here. She was excited when I told her they were coming but then when confronted with them she was nervous. She even fell asleep while Miss Utah was here hahaha. But Miss Utah was understanding and very patient with my little Brylee. Snow White and Cinderella brought her presents and were very patient as well. Brylee's favorite present was a pair of princess pajamas that they brought her. She changed into them the second the beautiful princesses left. Even though she was shy and sleepy, she didn't stop smirking the rest of the night after the three of them left. Thank you so much girls for taking time to come visit my princess. Today we had our first clinic visit after radiation. Her blood counts were great! Her immune system hasn't crashed yet which is good. They said that when her blood counts get too low they will have to do a blood transfusion before they can continue radiation. I hope we never get to that point. The part I don't understand though is that they added a whole extra 7 days to her radiation schedule today. Does that mean that they are not seeing the results they want? Or does that mean that they forgot to put us on the schedule earlier? I have no idea and trying to get straight answers out of her doctors is like pulling finger nails out with pliers. I feel like I never get a straight answer from anyone!! So frustrated! I just want to say a universal thank you to everyone who has been so willing to give so much of their time to and for Brylee. We truly are a very blessed family and we appreciate everyone in our lives. I've been trying to send out thank you cards and I can not keep up with the generosity! So if I, for whatever reason, forget to write you a card know that I really do appreciate you. We've been so overwhelmed with loving, caring friends and family. Thank you so much everyone! If you want to help out but don't know how make sure you email at bryleein5@gmail.com! Love you all!

Come back

I've decided that I hate radiation.  The doctors said that it is suppose to help alleviate her symptoms.  I have yet to see my baby girl come back.  She still can't stand on her own.  She still is slurring her words.  She still can't smile.  She still can't swallow.  And she sleeps all the time and is constantly saying her head hurts.  The only time she does talk is when she's coming out of sedation after the radiation.  And this isn't even nice talking!  She's mean.  She scratches, bites, kicks, and spits.  She yells for us to all go away and leave her alone.  I don't know if I can do this for 6 horrible weeks!  I miss my cute, bubbly, talkative little girl.  I want the sweet giggles back.  And the hundred "Mama"s in a row followed by the ummmms after I ask what.  I miss the smile that lite up her eyes.  I miss how she would squeal when I chased her down the hall.  I miss the eskimo kisses followed by butterfly kisses at bedtime.  I miss the none stop chatter about her baby sister.  I miss her telling her brother that he needed to obey the rules.  I miss her so much and all I have right now is a ghost of what use to be.  I had the most horrible thought today while I was watching her sleep, I thought that she's always going to be a vegetable and she's never going to be my little girl again.  The doctors promised that she would come back and they better be right.  I do not want these next few weeks to be how I remember my princess.

Bricks

I cried again today.  It seems like there's always something new to cry about.  I try hard not to cry.  I try really hard to hold my cool and be strong for my little girl.  Yesterday will be a week of chemo and a week and a half of radiation.  She is finally starting to lose her hair.  I had her in the tub and I washed her face and 7 eye lashes fell out at once!  I couldn't help myself...I just started crying.  I know that she is going to be beautiful no matter what she looks like but it finally felt real today.  She's going to lose her long lashes and her beautiful ringlets!  I knew it was coming and I expected it but I was not prepared for the emotions involved with it.  I don't want this horrible nightmare to be real and I've done really good about ignoring it.  The feeding tube and meds I can glaze over but the hair lost hit me like a ton of bricks.  I don't want to lose her.  Once again I'm clinging to her saying "Don't leave me."

Reality

I need to clear some things up so I stop getting my feelings hurt and I stop wondering why people don't get it.  I must not have been clear enough when I talked to people or wrote on this blog or facebook.  Brylee's tumor is 100% fatal.  95% of people die within 9-11 months after diagnosis.  5% survive 2-3 years after diagnosis.  I need that 2-3 years that's why I keep saying Brylee is going to make the 5%.  And when I talk about her dying it's a for real thing.  I am going to lose my baby.  And I know everyone is trying to be uplifting and helpful, and I appreciate it, but I'm not being depressing or unbelieving when I talk about her passing.  I'm being honest and blunt.  I need everyone to understand that in order for her remaining time on this earth to be the most wonderful time possible.  I love her so much and I don't want to lose her.  But I am going to.  When I say pray for a miracle I'm being serious.  That is the only way she is going to remain on this earth is by a miracle sent straight from God himself.  But in all reality she'll be gone as early as Christmas or as late as her 6th birthday.  That's why my life is on pause.  I need every last remaining second with her before she goes on to greater things.  She is the most amazing, special little girl I've ever met.  She is loved by so many people and I know everyone is going to miss her.  But you all need to know that her time is limited so make whatever memories you possibly can before she is gone because she will be leaving us...it's just a matter of when.