10.24.2009

10.13.2009

Only 14 more!

I had chemo on Monday morning, and they're getting a little quicker at the Liberty campus of Children's. We got there at 8:30, and we were heading home by 11:00 - not too bad compared to the clinic at the main campus. It's also a little closer, and parking is a breeze.

I must say that I am definitely not a fan of my new port while it is being accessed and de-accessed. I know I said how much easier it is, how much I love swimming and taking baths, how grateful I am that I don't have dressing changes once a month... blah, blah, blah (my newest favorite phrase). I realize I said all of that, but getting a big L-shaped needle shoved into my port (which is under my skin right below my left nipple) is no picnic. Even with the emla cream, which is supposed to numb my skin, it really hurts! It was also uncomfortable for me overnight on Sunday, because after accessing my port with the big yellow needle and taping the needle and tube down with Tegaderm HP and Hypafix tape, it stuck out from my chest and made it difficult for me to sleep. Then, after they gave me my chemo on Monday, they removed the Tegaderm, tape, and needle while Mommy had to hold me. Needless to say, I loudly voiced my displeasure and discomfort.

Have I mentioned lately how much cancer sucks?! I overheard Mommy on the weekend talking to her friend Meg. Apparently, her older sister Mary Beth (50) was just last week diagnosed with ALL, like me. Please join me in saying some extra prayers for her so that she can be strong and continue to fight just like I am doing! She is starting her induction phase, so she'll be getting chemo and steroids (which I know is very rough). Hang in there, Mary Beth - you can do it!

The good news? Well, my counts are fabulous right now, which means my body is doing what it needs to. Unfortunately, the doctors want them to stay within a certain range, not having them go too high or too low. So... as a result of my high counts, they are increasing my dose of Methotrexate to six pills (over the last few weeks I took five once a week, and the month before I only took four once a week) so that my counts go down more. I hope they don't drop too much. There are way too many bugs going around, and if my immune system bottoms out, I might catch something and land myself in the hospital.

Please pray for my counts to stay within the desired range, the bugs and specifically swine flu to stay away, the health of all the kids and families on A5S at Children's, and Mary Beth. Love to you all!

10.07.2009

Quick Update

I painted my face at Totter's Otterville during Lily's birthday party.

Daddy and I rode the trolley together, while Lily rode with her friends.

I made a crib for myself in the family room.


Cheese... look at all of my hair!

Lily tried to teach me how to shake my pom poms...



The swiper ride... my absolute favorite at Kings Island!



Too much shaking of the pom poms!


Well, I didn't get kicked out of Goddard, but I'm not going there any longer. Daddy and Mommy were getting freaked out about me being in a daycare setting with H1N1 and lots of other bugs that could prove deadly for me floating around. They were also tired of packing Lily and me up each morning with breakfasts and lunches (no peanut butter, either!) and rushing to get us to school so that Mommy could be on-time for work. They have hired a new nanny to care for Lily and me, but Lily will continue to go to Kindergarten in the afternoons, taking the bus from our house and home again.

It took me a little while, but I actually had fun going to school. I made lots of friends at Goddard, and I've already had my first (and second, and third...) kiss(es). Miss Stephanie told Mommy that I had kissed Ethan ("my boy," as I call him) from my class at Goddard, and Mommy asked me why I had kissed him. I told her, "Because I wanted to." He is really cute; blond spiky hair like mine, big brown eyes, and the class clown... They say you fall for guys like your daddy, but it's kind of ridiculous that my first "boy" even has the same name as my daddy!

Let's see... what fun things have we been doing? Since I last wrote to you, we have celebrated Lily's birthday (see a couple of pics above), started school (Lily's in kindergarten), finished swim lessons, rode rides at Coney Island, visited Kings Island, played games at Dave and Busters, gone to Boo Fest with Nanna B. and Poppa, and a few other things. In essence, I'm getting back to being a typical toddler.

I now just have to take chemo (Mercaptopurine - orally) each night, Methotrexate (another chemo orally) once a week, steroids for five days every 28 days, and we visit the Liberty Township clinic once a month for chemo (Vincristine) that I get through my port. I really don't like it when they access my port... it's pretty painful to have that big needle sticking into my chest. But, once they do what they need to, they de-access the port, and then I can swim, bathe, and not worry about anything dangling from my chest. I love having this new Ariel! Other than the things I mentioned above, every third month, instead of going to the Liberty Campus, I have to go to the main campus of Childrens to have a lumbar puncture with intrathecal methotrexate as well getting my Vincristine (I had this done on September 15).

I'll be starting physical therapy at the Mason Campus on October 27th, and I'll go every other week. I was evaluated after my limping this summer, and they determined that I indeed am delayed in my gross motor development. I guess that's to be expected when you lay around for a long time in the hospital, and continually get chemo that causes leg pain and weakening of muscles...

The good news... Mommy just counted, and I will only have fifteen more months of treatment! While that sounds like a long time, and I was just diagnosed a year ago (on October 19th), the time is going really fast now that I'm in maintenance. December 17, 2010, is my end date for treatment, so please pray that I can make it there without incident or recurrence.

Sorry it's taken me so long to update you, but trying to get Mommy to write these days is difficult! Since I can't type on my own yet, I'm pretty much reliant upon her. I'll attempt to get her to update you more frequently, but you can tell I'm doing better when she is NOT writing as much.

Love to you all, and thank you for your continuing prayers for me and my family. I hope you stay healthy and are able to enjoy the fun fall activities and change in weather... I know I plan to!