Chemo for Snow White

Presley has been talking about this day for a while. When the nurses told Presley she could wear her costume to clinic she was exited and has been asking when shes gets to go as Snow White. Today is that day Presley, the day finally arrived. I finished the dress just yesterday. It has been mostly done but I always leave the lose ends until the last minute. Getting to dress up today made going to clinic fun but complicated to get her port in and out. But I wasn't going to let that get in the way! The nurses are always so sweet to make Presley feel special and today was no exception. The nurses are her friends. She sees them more than anyone else these days.

Our beautiful princess...Snow White. You are such a brave girl. Love that smile.  You are my hero.

Vital check for Snow White!

Getting port accessed and working on a craft.

The other kids were dressed up too!

Clinic was pretty routine today,  but getting to be Snow White was the best part! Presley's ANC is 800 and her platelets are getting a little lower. I have noticed her bruising and so her low number didn't surprise me. So Doc. Fluchel decided to not elevate the dose of Methotrexate and keep the dose where it was last round. This will help so that she will not bottom out or let her numbers get too low. I asked the doctor a million questions today. I listened to a webinar yesterday for an hour or so with Doc Rheingold from Children's Hospital of Pennsylvania.  Doc Fluchel did his fellowship there and knows this doctor well. The webinar was great. I'm such a nerd and love to read and understand Leukemia.

Can you see what she wrote on the white board...PRESLEY! Love seeing her write her name.

Presley...I mean Snow White also made a fun spider today at clinic! Mommy was paranoid..black paint! We made it through the day with no spills on the new dress!

Snow White in the nurses station trying to find the right band aid for her port! They are getting low on Princesses :/ 

Clinic Nurses...We LOVE you guys! Thanks for all you do for Presley and the other kids.

RTU Nurses. We had to stop by to our friends down stairs!

RTU Nurses (Where Presley gets her back pokes) I use to hate this place and never thought I would go back for a visit! 

 We are on the count down. Two more rounds of this phase and then we hit the long awaited maintenance. Really, I have mixed emotions about this. We will get randomized and see what arm she will follow on the study that she is currently on. So all the details are not known for sure. But it's sure she will take an oral chemo everyday for 2 years and a handful of methotrexate pills every Thursday. No days or weeks off. Unless they take her off the chemo due to her numbers being to low but they don't like that so they will try to avoid that. She will also get pulses (5 days a month) of steroids and you guys know how much I like those. Immune suppressed for just under two years...ugh. On the other side, will have less often clinic visits and lower doses of chemo, less back pokes, and her hair will grow back! Mixed emotions with that, we've loved the bald head but know hair is inevitable. Did I mention she thinks her hair is going to grow in pink! I always am a little leery of the new phase of treatment. I'm nervous to start and don't know what to expect so naturally I'm feeling the same about the next phase. But as time goes on I grown to like the phase and learn the ins and outs and know how Presley takes the chemo. I have been anxious about Presleys bone loss due to the steroids and sometimes the damage shows up in maintenance. As I learn more and more about childhood cancers and make more friends in the cancer community. I must be grateful and be okay with where we are currently at. Presley has the best diagnosis at the best age. No it does not take the fear I live with daily away but I find each day I search for peace and find more comfort in things I never did before. I love more, I'm attentive to others needs and heartaches, I pray more, I'm more sensitive. I have more patience. I value the little things in life and have more faith in my Heavenly Father. As I always say..the Lord does not take from us without giving back to us in other ways. I know I have lost some things but in other areas I have been given so much. Thanks so much for our faithful followers and supports. Your love and support carries us through these hard times. I am forever thankful for the role each of you play. We love you!

Presley's port access was hard today and I told her we could go to the Disney Store. Clearly her favorite place!