Consalidation

This morning was intense. Presley is so aware of what is going on. There is just no way of tricking or hiding that it's "clinic day", she even asks, "Is today clinic day?" So when I told her it was time to get dressed and that it was clinic day she was not happy and cried the whole time getting ready. Crew being here was a great distraction after she woke up until it was time to get ready. Again today she was not able to eat anything after midnight last night. These morning are not easy on any of us. It's been a full week off steroids. It usually takes 3-5 days for the effects to wear off. Presley really has had a great week and everyday we see improvement in her demeanor and her strength. We got the cream and press and seal on, an outfit and out the door. Grandma was able to join us this week and to get to see what it's like to go to clinic. The morning was rough, but after Presley was accessed, she was playing "go fish" while siting by herself with Grandma. We waited for the CBC (blood count) to see if we would be able to have treatment today, she is count dependent. Presley was actually interactive with Kristen today (the best nurse EVER), she is our clinic nurse. Doctor Fluchel reported that her ANC was 900, and it needed to be 750. She again did not need blood or platelets. WHOO! We were given our new calender, and information needed for the second phase, Consolidation. This phase is 4 weeks long. On week one (today) Presley got Vincristine (chemo) in her port and a lumbar puncture (spinal tap) with chemo. Presley will take a chemo pill (6-MP) every night for 29 days.

Playing Go Fish with Grandma during clinic. Hard day for Grandma to see you so sad.

Today we had a lot of tears on the way here, but it's not so bad now that I'm playing a game.

Clinic Day, 1 week off steroids, still a little swollen.  Love that you still have a smile in you everyday!

LP (spinal tap) went much better than last week. Presley was super sleepy this time and the nurses finally came to get me to see if Mommy's voice could get her to wake up. It was a sweet moment when I rubbed her back and said, "Presley, mommy is here", she opened those beautiful blue eyes and looked right at me. She ate fries, deacessed (that darn sticker) and went home. We took her to Target to pick out a game for being so brave. Presley's energy and little spirit is back 100% but not her strenght. I have been so wore out at night trying to keep up with her demands!
Grandma was glad to get to come and see what this is all about, she has been with Crew for the past 5 weeks. It's intense and very hard to see little Presley go through all that she has to endure. Each week gets a little better!

Consolidation (4weeks)

Day 1-LP (back poke chemo)
           Vincristine (IV chemo)
           6MP (oral chemo at home for 29 days)

Day 8- LP (back poke chemo)

Day 15- LP (back poke chemo)

Day 22- No clinic today!!!

Day 29- CBC to Check if we start the next phase


This month should be pretty easy. Only ONE chemo in her port ALL month, 3 back poke chemo and a nightly oral chemo. It feels so good to finally get a little bit of a break for Presley. This month we will focus on getting her strenght back and playing like a normal kid!