Week 2 -Consalidation

Today's clinic was great. The nurses said that at about 4 to 6 weeks the clinic experience for Presley would become must easier. They were right. They also told me that Presley would stop walking, reverse her potty training, and act much like a baby again. They have been so right on all of it. The nurses and doctors and of course the angel moms who have been down this hard road before us, paving the way, have helped this experience so much. I am forever thankful.
At three years old I am amazed at just how much Presley picks up on. Monday of these week, I said today is Monday. She then said "No clinic today, and tomorrow is Tuesday, no clinic." In her little mind she is figuring all this out. She knows that on wed we go to clinic. Last week when we got her ready for clinic she cried for an hour. This morning she seemed just fine with the fact that we were going to clinic. We have prepared for this day all week. We picked out a special outfit to wear and talked about what hat she would wear. I try to prepare Presley and really talk to hear about what is going on. I can tell this is really helping, and she is figuring it all out. We have talked about "EMLA cream, the "darn port sticker", the nurses etc. We talk about all the nurses during the week, we use their names. She can tell me all the nurses that we see at clinic by name and tell me something about what they do or what they say. Sandy, Pam, Kristin, Doc Fluchel, each one of them have really touched our lives.
Our big moment today in clinic was that she was able to stand on the scale by herself for them to get her weight. It's these small moments that make us happy. We also got to show everyone that we are walking! Presley was able to walk (with help) around in clinic today. All week she has been talking about asking Kristen (her nurse) for some extra port stickers so she can put them on mommy, daddy and of course Crew. The port stickers are the worse part of clinic. The only tears today we saw was when it was time for the sticker to come off. First thing at clinic this morning Presley asked Kristen for the stickers. The child life specialist then brought in all the nurse and doctor toys to play with. A basket of gloves, port stickers, masks, blood pressure cuff, and a doll (buddy) to interact with. I have loved this part of the hospital. They have been so good at showing Presley what they are going to do on her, with a doll. The little mommy in her loves this too. Again I'm amazed how much she picks up. She knows the exact steps in the port access.
1. Put masks on everyone
2. Clean the port area, with the sponge tool (she knows it clicks and it's cold)
3. Then the "tubies" you push in (this is the actual needle, she just doesn't know that part!)
4. Then the "darn sticker" to cover the port
5. Stickers that go across the port to identify that it's a power port
6. Clean the tube and screw on the syringe and pull blood and push medications
She can walk thru all those steps and tell us what to do. With the doll she did all these steps, a few time while I was talking to the Doctor.
Her numbers are great this week, a little low on blood but her red blood cells should recover on her own so no transfusions. That was one of my questions for the doctor this week, How often should be expect to get blood products? She has only had one blood transfusion so far. As long as things go expected, we won't have to have too many, until the nasty Delayed Intensification Phase (at about the 4-6 month time frame) Her ANC (immune fighting cells)  is 3,000. WHOO! We don't have to be on house arrest and I can take her to the store without a mask! Today marks our second week of Consolidation. No Chemo in her port, just a spinal tap (Lumbar Puncture) to administer chemo in her spinal fluid. Each night she takes a oral chemo and is a pro at swallowing pills.
Next week should be a lot like this week no chemo just a back poke and then we get the following week off! This phase of treatment has really given us a break and Presley is feeling much better. We really don't have any symptoms we are dealing with besides getting her to walk. After the LP (back poke) shes a little sore in her back but nothing to wild. Everyday we see improvement. By next week, I hope she will be walking on her own. It only took Presley about 5 mins to come out of anesthesia so today's clinic was only about 1.5 hours.
Our days have been filled with playing games, singing, watching moves, going to the park, shopping, coloring and playing more games, then a game after that. Sister loves to play games!

Ready to play Go Fish!

Getting the port and sticker ready to acess her buddy.

Blood Pressure check.

Pushing meds into the port.

Checking the heart beat and eyes.

Today after clinic I promised her we could do to the Disney Store, she had a gift card (Thanks Nana and Papa). She was so excited and held her "card" all day at clinic until it was time to go. She picked out the "Belle" dress and shoes. Presley loves the pricesses and loves to dress up.
Great Job today Presley, you are so strong and have really come along way in just a short 6 weeks. You are one smart and brave girl.