8.17.2009

So this is summer...



I love scaring everyone (especially doctors and nurses) with my purple vampire teeth. Arrrrr, arrrrrrrrrrrrrrr...

My first tub frolic in about ten months


I still love the Swiper ride at Kings Island the best of all!



Check out all of my hair!

My new port (which I call my "new Ariel") totally rocks! My old (Broviac) central line was an external line with a cap on the end that allowed me to receive chemo and have blood taken without being poked. The nurses could just hook into the cap, and I didn't feel a thing. The problem was that if the external dressing got wet, we would need to change the dressing to prevent infection. They make these things called "AquaGuards," which we tried to use, but they don't keep out the water very well at all. Someone needs to invent something for kids who have central lines, so that they can swim and bathe, too... Another bad thing about the central line was the dressing changes once a week (sometimes more), since Mommy or Daddy needed to pin me down screaming while the other one ripped the dressing off, cleaned the area, waited for it to dry, then applied a new dressing. The whole ordeal lasted about 45 minutes each week.

With my port, I don't need to have my Ariel flushed each day, Mommy and Daddy don't have to worry about someone/something pulling on my line, we don't have once a week dressing changes, and I can swim and take baths all I want! My new Ariel (port) is under the skin on my chest, which makes a very watertight bandage that doesn't need to be changed each week. The downside is something I experienced yesterday and today, though. When they need to access the port, a BIG needle is poked through the skin on my chest into the port, and a dressing is placed over the needle and part of the tube to hold it in place. Nurse Julia missed the first time yesterday, so I got poked twice. I didn't like being pinned down while she poked me or when the dressing was removed after my Vincristine infusion today, but Mommy and Daddy say that five minutes of screaming once a month is better than 45 minutes each week. I totally agree, and besides that... I can swim now!!!

All summer long, Mommy, Daddy, and Lily have been trying to keep me out of water, and since I got my port placed on July 29th, I've enjoyed being submerged in some type of water every single day. I even started swim lessons last week, and I'm swimming along fabulously.

I'm feeling great, in case you were wondering. My hair continues to grow back, and I'm acting like a normal three year old (unfortunately for my mom and dad). I'm full of energy, attitude, singing, and dancing, and I've been making lots of people smile and laugh with my words and actions. I have quite the personality!

Mommy and Daddy had a little scare last week, though. I started limping again, and they were worried because that's what clued them into the fact that something was originally wrong last October. Mommy was petrified that some leukemia cells were back, which made Daddy go pale thinking about it. We went into the clinic on Thursday and saw Dr. Raj and Diane, my nurse practitioner. They watched me walk for popsicles and agreed that I was definitely limping. Next they tickled my legs all over to check for acute pain, but I didn't have any. The two agreed that the limp was probably due to some muscle shortening and lengthening from the cumulative effects of chemo and steroids, even though the timing seemed off. The doctor called for some x-rays to be safe, and Diane was going to work on setting up some physical therapy for me so that we can ensure there isn't any damage from the hobbling. The x-rays didn't show any bone or fluid issues, and my blood test from Sunday didn't show anything. Dr. Absalon didn't seem really concerned about it at my clinic visit this morning, so I think Mommy feels a little less scared.

The next time I go to the clinic, it will be for a lumbar puncture and intrathecal Methotrexate on September 15. It's so nice to only have to go to the clinic once a month now, although I really miss all of the nice doctors, nurses, and other support staff at Children's Hospital. It's amazing that I do NOT despise going to the hospital! Usually, I don't want to leave, and that says something for the people that work there and take care of me.
Please pray for Mommy, Daddy, and Ms. Julie this week. I am on steroids again, and I am super mean. It's incredible how my body can remember with only one dose of Dexamethasone how nasty and indecisive I am supposed to be. At swim lessons tonight, I was throwing the swim ring at Mommy's face, splashing her on purpose, hitting her, and screaming while laughing. While this seems like normal toddler behavior for some kids, I'm actually very sweet and didn't do these things last week during swim class. Hopefully, the Clonadine prescription that Mommy had filled tonight will help to keep me from being so agitated and mean. Mommy's worried that I'll get kicked out of Goddard during my first week there. I'm excited about starting school tomorrow, but we'll see...