last dose of front line chemo

Today was a big day, well it was in our world. Presley received her last dose of front line chemo. Remember way back in March the doctors told us that the first 6-9 months would be the hardest! WE ARE DONE with the 6-9 months hard chemo treatments. What a relief. I feel like 100lbs has been lifted off my shoulders. We made it. We are no where near being done with treatments but getting closer. The road of "Maintenance" is not an easy road but better in many ways. Presley will still be immune compromised/suppressed and she will take oral chemo everyday, steroids every month (UGH-UGH), Methotrexate for an LP (Back Poke). Good bye to IV methotrexate, red devil, ara-c, PEG...these are just a few. I spent a lot of time lately thinking back on the past 6-9 months. We have come so far. I remember the days while we were living in the Ronald McDonald house with a very sick baby. So thankful she is doing good and continuing to show us just how brave she is. I want to be more like her! Everyone comments on how good she looks! I can see her coloring come back a little and I smile every time I look at her hair growing in. For the most part she is happy and healthy. We are still working on insomnia and sleeping issues and some of her independence has been lost and side effects from the treatment. We are thankful for modern medicine and what it has done for our little solider.
Today her ANC was 3200. Its has been 3 months since we have seen her ANC that high. I was getting a little worried. I wanted to shout when the doc told me her ANC was 3200. FINALLY starting to recover from those harsh chemos in Delayed Intensification. With an ANC of 3200 they increased her dose of methotraxte (IV chemo).

She loved playing with the stamps today. 

Hair makes me smile!

Mommy and her Brave girl!

Waiting for chemo!

Presley getting her last dose of front line chemo (IV methotrexate)

Today as I sat and held Presley waiting for chemo back in the "infusion" area. I witnessed yet another family whose world was turned upside down. I don't even have to listen to the conversation to know what is going on. It's all to familiar to me.  Some mothers look at you like "HELP", while others shut the curtain for privacy as they take all this in. Oh it is so much to learn and do and its hard. Usually I start up a conversation and try to see if I can help in anyway but today I didn't, I let curtain hide us today. I tried to just reflect back to that first week. The emotions, fear, hurt and anxiety. It's just as hard as a mother or father to be brave or to hold it in while you calm a fearful child. It is not just Presley going through this cancer mess, it's each one of us. We have been there for every step being strong for her. I can't get that family off my mind and the smile on the infants face. My love for all these little fighters is so strong. I cant explain how it feels but I will never stop fighting for our little cancer cuties. Sometimes I try to act like I don't know anything as to hide or try to believe this is really just a nightmare and it's going to all be gone in the morning. I held Presley tight today while waiting for chemo. I tell her all the time that she is brave and my hero. She just listens and really doesn't know what to say back. Today I just held her in hopes that she would feel how brave I think she is.

I love to crochet and the past 10 days I have been so busy. I made 5 Rapunzel hats to give away today. Nurse Becky got a hot pink one (Presley is coming, so they can be twiners. This was our fix, Presley still tells people that her hair is going to grow in pink! This girl loves pink! It feels good to your soul to give of yourself. The smile on that little cancer cutie that Presley gave a hat to at random was so excited. Her mother was in tears. It's not everyday that you can do something and know you really made a difference but today was one of those days. With a feeding tube, massive scare on her head and the "Moon Face' (chubby steroid look), the hat made it all feel better. I know brave little kids! I feel proud to know them! I am especially thankful for our sweet Presley. I'm proud to be her Mom. Not ashamed one bit, she wears that bald head so proud and stands tall. She never stops to think poor me, she is my hero.

We get 19 days off. 19 days, like your counting down for a vacation. I hope and pray the next 19 days feels like a year. What a gift 19 days of no clinic, chemo etc.

Presley and Becky. We made pink hair for Becky! We love you Becky!

They all realized in the hall they all had a new hat today! We met Zoe and gave her a hat today. Sill Doc Fluchel is wearing the hat we made for his little girl. We also gave Nurse Kristen 2 for her girls.