Day Four and Five

Today was the first time Presley was given chemo via her port, or IV. We have also started the dreadful steroids. She will be taking 2 doses a day for 29 days. 

Presley has loved eating "eggies", and that is pretty much all she has eaten while we have been at PCMC. We laugh at the menu, its definitely a Children's Hospital!

Yummy!!!

The nurses have been so good,  and the doctors have been amazing! We couldn't ask for better treatment. The child life specialists have been great for Presley. Before every procedure, they bring in a cotton doll, and do all the procedures they are going to do to her, on the doll. They always let her check the blood pressure and temperature on her doll.

Beautiful girl! Love that smile!

We have read so many books! I am so thankful I grabbed her favorite stories from home, those have been very comforting. Presley painted, colored and loved riding the trike and tikes car through the hallways. Our room was full of balloons and visitors. We met with nutritionalists, social workers, admin, etc. Its never a dull moment. We played interactive bingo with the other kids at the hospital from our room. Presley loves when the dogs and cats come to her room to visit, thats always a highlight! 

Presley doesn't love it when new people would come into the room. We have to reminder her that there  won't be any "owies". She was nervous because she didn't  know who was going to poke her. :( 

Meeting one of the service dogs... so cute!

Showing off her mad skills!

Go, Presley Go!

Racing through the halls! 

Sweet girl painting a beautiful picture!

Playing games! One of her favorite things to do!

Our Oklahoma family sent Presley a Mini-Ipad! This has been a life saver, not to mention that all the disney movies that were pre-loaded! Her new favorite movie is the Lorax. She wants to watch this movie over and over again! We were told this is very normal for these kids. They want things to be familiar. Our hearts our full, we have so much to be thankful for, even with this horrible diagnosis. We have faith and hope that all is going to be well. I was told today that I was known as the "poster parent" and was told I was on top of things. I assume that is because I ask a lot of questions and follow the rules. We have had many education or learning sessions. We have a big binder of new information to learn and absorb. We feel a little overwhelmed, but they assure us that we will be pros at this soon. Something we never wanted to be pros at, but ready or not, here we come! They often joke that the parents of cancer kids should be given a nursing degree at the end of the 2.5 year of treatment. I agree. I already know how to turn off the beeping, do the blood pressure and pulse ox. I hear by the end of the course I will know how to flush, and administer drugs and fluids thru her port. Crazy!

I love her so much!

Day Five we were released from the hospital. When Presley was diagnosed she had 34% blast in her bone marrow and 18% in her peripheral blood. By day 8 they want the minimal residual disease (MRD) in her blood to be under .099 and day 29 at 0 in the bone marrow. We are only on day four and five of a long road ahead. Please keep us in your thoughts and prayers.