7.16.2009

Maintenance!!!

My little cousin Ricky... I love his hair!
My Stella playing with beads and me

Papa and I making yet another trip to fill up my bucket


Lily loved the sand and water


As I said above...



Lily and Rachel waiting in line for the Big Bad Wolf

I wonder what five year olds chat about...


I'm pretty cute!

Wheeeeeeee...


What fun!


I wanted to jump off the pier into the water 40 feet below, but Mommy held onto my dress with a death grip. Papa was nervous the whole time.


Mommy took this pic before the ride started (when I still liked the ride)


Emma and I cruised in the shiny red convertible


Daddy got a workout hauling me around

I got to blow out a candle on another cake on my actual birthday
This was the first of five times that I rode the boats at Busch Gardens

Sorry I haven't updated you in a while, but this maintenance phase is keeping us quite busy. The good news is that I made it! I'm finally in the last phase of my treatment. Maintenance is something that everyone has been talking about favorably since my treatment began last October, and it will last for a year and a half (until December 17, 2010).


A brief recap of what's been happening with me health-wise:
  • June 23 was day 1 of maintenance, and since my counts were surprisingly quite high, they gave me a lumbar puncture (spinal tap) with intrathecal Methotrexate and IV Vincristine. I'll get this once every three months. The goal is to keep my counts within a certain range… if they get too high, they give me more chemo, if the counts take a dive below 500, they back off the chemo.
  • I'm getting a five-day "spurt" of Dexamethasone once a month now. In case you don't remember, this was the drug that I took for the first 30 days of my inpatient stay at Children's. The Dex made me eat everything in sight at all hours of the day and night, resulting in about nine pounds of weight gain (a lot, considering it was about a third of what I weighed at the time). The more difficult side effect was the extreme mood swings and the resulting inability to make up my mind. Mommy and Daddy were ready to pull their hair out within a few days. Luckily, I'll only be getting the Dex for five days at a time, so the side effects aren't supposed to be as bad as they were during my initial hospitalization. I started the first course of it on June 23 with my other drugs, and the second course begins next week. The first five-day spurt could have gone better, mostly because I really despise the taste of the Dex and cannot make up my mind when I'm on it. Mommy tried mixing the "yucky medicine," as I call it, with all different things so that I wouldn't taste it. All it did was make me not want to take any of my medicines. Pray for Mommy, Daddy, and Lily to have patience with me next week...
  • Since the beginning of this phase, and until the end, I will be taking 9ml of 6MP (Mercaptopurine) every evening orally before bed. This is chemo I've taken before, and luckily it tastes good to me. I lovingly call it "the yummy one" and "my chemo." Mommy has decided that “chemo” really should not be in the vocabulary of a three year old.
  • A new oral medication that I’ll be taking once a week is Methotrexate in pill form. This poses a problem, since I don’t swallow pills. Mommy’s been crushing it, mixing it with a tiny bit of water, then adding some chocolate syrup and sucking it up in a syringe. I also call this the “yucky one,” but as long as I can take the yummy one before it and drink some juice afterward, I do okay with it. At least it’s only once a week.
  • My Ariel (the name I have for my central line) has really been getting in the way of me having a good summer. Mommy and Daddy have decided that a port (Mediport) will be a better option for me now that they only access the central line for medication once a month. The port is under the skin, doesn’t need to have a dressing over it (meaning no dressing changes!), doesn’t need to be flushed once a day, and I’d be able to swim and take baths as much as I want. Though I will need to get poked when they give me chemo and take blood, a couple minutes of screaming once a month is much better than 20+ minutes of screaming once a week and avoiding water like the plague.
  • They’ve scheduled surgery to remove my central line and place my port for July 29 at 1pm. Let’s hope all goes well so that I can still enjoy some of the summer! I’ll have 2.5 weeks of healing time before they need to access the port, which is definitely a good thing.

Fun happenings in my life:

  • We’ve visited Kings Island a few times, and Nanna B. even joined us once. My favorite rides are the kiddie carousel (I can ride it ten times in a row!) and the Swiper ride. I thought the Scrambler was cool, but I didn’t want to do it again.
  • My hair is growing back! Every day it sprouts some more, and it’s even sticking up occasionally. It’s really soft. I know this because everyone wants to rub my head and tell me how soft it is.
  • Mommy and I went to see the Dora Live! show at the Aranoff at the end of June. Aunt Renee got us tickets (thank you, Aunt Renee!), and it was so much fun to have an evening with Mommy in the city. I thoroughly enjoyed the music and waving my star on a stick around when Dora asked me to.
  • We have a new addition to our family. Stella is our adorable, black three-month-old kitten with white paws and a white neck and tummy. I call her “my Stella” and ask “Where’s my Stella?” and “Where’d my Stella go?” Lily has claimed her as her own pet, but I think she enjoys playing with me, too.
  • I’m three years old now! I had a blast at the birthday party at my house on the 4th of July. I was able to see and play with lots of people who I love (Great Nanna even made the trip in from Charleston!), and I couldn’t wait for my Dora cake. We went over to Kenlie, Kaylee, and Katelyn’s house after the party to watch the guys play with firecrackers and fireworks. I had a good time playing with Kenlie’s toys, and I surely wasn’t ready to go home for bed. But…
  • Mommy, Lily, and I left for vacation at 4am the morning after my party. Nana and Papa met us at our house, we all hopped in Mommy’s loaded-up car with turtle top, and we drove to Myrtle Beach. We arrived at the condo at check-in time (4pm), just after I yelled, “Get me out!” Mommy was hoping I would be afraid of the ocean again (so that my Ariel wouldn’t get wet), but she had no such luck. She had to change my dressing that evening after my trip to the beach, a dip in the pool, and a soak in the tub. Nana held me down, and I saw tears in her eyes as I screamed and pleaded with her to let me go. Mommy didn’t so much look like she was enjoying herself either… Good thing we’re looking into a port.
    We stayed in the condo for three nights, and we visited Lily’s friend Emma’s house on my actual birthday (July 7th) for a fabulous birthday dinner and cake. Emma’s mommy Kara is so wonderful! She had lots of toys to entertain us, made a great dinner, and even gave me a singing Dora card and gift. What’s even better was that she invited all of us to stay with her the next night so that we didn’t have to make our trip to Ocracoke, for which we would drive for six hours take a 2 ½ hour ferry to the beach, be without a hotel for several hours, then do the same thing (in reverse) the next day. None of us was looking forward to making the trip, so the extra time of fun and relaxation at Myrtle Beach with Kara and Emma was really appreciated. Both Emma and Kara were such good hostesses; it was so nice of them to share their quiet time, home, toys, food, and company with us. Lily and I even took our first ride in a convertible! I will surely need one of those when I get older…
  • Upon leaving Myrtle Beach on Thursday afternoon, we headed for Williamsburg, VA. There we met Aunt Louisa, Rachel, and little Ricky at a different condo. We kids had a wonderful time chasing each other around until around 11pm that night, and then Mommy, Lily, Rachel, and I all slept in the same room. Donning lots of sunscreen, we ventured out to Busch Gardens Europe the next day. I rode a few rides, and Lily rode her first really big roller coaster. It was called the “Big Bad Wolf,” she loved it, and now she doesn’t want to ride any of the slow rides. Mommy’s worried that she’s hooked now. Mommy and Nana went back to the park in the evening and rode (really fun) roller coasters while Aunt Louisa and Papa took care of us kids. The next day, I got to go to a couple of playgrounds with Papa and Aunt Louisa, and Lily and Rachel went to the waterpark with Nana and Mommy. I really would have loved to go! Maybe we’ll head back sometime after I get my port. Uncle Rick and Daise (Rachel and Ricky’s au pair) came in that afternoon, and we played putt-putt that evening. I wasn’t so into taking turns hitting a little ball with a stick, so I dragged Mommy to the playground instead. All in all, it was a fun trip, but we were glad to get home to Daddy and Stella.
  • Since I’m in maintenance, I’m allowed to go back to school. Mommy’s registering me at Goddard, and I’ll be in the Creative Crickets room with Ms. Julie starting mid-August! Lily absolutely loved having her, and I think I will, too.

I’ll try to get Mommy to update you again soon. Until then, please continue to think positive thoughts for me and pray for my friends Leah and Liz, as well as all the other kids on A5 South.