Courage

There are days when the courage of my daughter leaves me speechless. Today was one! After several reaction free days, this morning she had a new reaction...big fat swollen lip. For any ten year old, something that effects your appearance is a BIG DEAL. I won't kid you, Madie was disappointed, but in the face of going to school looking like someone punched her in the mouth, she got dressed and headed out the door. It certainly makes me reflect on my own discomforts and realize that if a ten year old girl can go to school with a giant lip in order to save some other kid's life, whatever aches and pains I feel are nothing. Madie's courage is a lesson to us all, and also a reminder that this research study takes a great deal of EFFORT for someone who has only walked the planet for ten years.

50 mg doesn't even equal 1/10 of a peanut!

I learned this today from Dr. Jones, I can't believe we will eventually make it to 4000mg (@14 peanuts). I'm going to have to get creative with the dosing soon. Any ideas would be appreciated, so far we are using apple sauce or pudding every morning.

They let Madie help take her own blood today, she was switching out the vials like a pro. I can't believe how brave she is! Then she hit the centrifuge machine to spin it. If I haven't said it before, the staff in the pediatric clinical research unit at ACH are incredible, they are starting to feel like family. They make this difficult experience so much easier by connecting with the kids and keeping them involved.

The drive, however, still hasn't gotten any shorter! Oh well...

Madie's Entry September 24, 2007

Right now I'm on my way home. We left the hospital about 30 minutes ago. Today I got my dose doubled and my mouth and throat itched sooo much, but only lasted 20 minutes. This time I had to get blood taken (so cool!) and got another skin test. SOOO ITCHY!!! I'm so glad I don't have to get one every visit!


-Madie

The Drive...

Madie's dose has increased to 25mg, other than an ichy throat she is doing great. FYI, the drive roundtrip is 722 miles, which means I am logging 1400+ miles a month on my car, not including my daily "Mom's taxi service" routine.

Madie's 2nd Visit Thoughts

Today we went back to ACH. I got my dose doubled. My throat itched a bit and I also got a few hives. While we were there, somebody new came in, and her name is Annie. It was her first time and she was pretty scared. She is only about a year younger than me. I talked to her about the study and told her that it was only scary the first time. Annie took my advice and then read this blog. I guess I'll be seeing her in two weeks!!!

- Madie

Mom's 2nd Visit Thoughts...

Madie received her 1st dosage increase yesterday, she's moved from 6mg to 12mg daily. We mix it every morning in applesauce, but will get more creative as the dose gets larger. Madie continues to face the entire experience with enthusiasm and excitement, in spite of an ichy throat and swollen lip after receiving her dose. We are hoping these minor irritations will settle down in a few weeks. Madie will post her thoughts tonight after guitar, piano and makeup school work is complete :).

Frozen blood is cool!

Madie's thoughts on the first trip

The trip to Arkansas was great, but every trip has its ups and downs. The Arkansas Childrens Hospital was very nice. One of the nurses, Mrs. Karen, met us by the gift shop and led us upstairs. We walked into the research room which is where they do the study and were led to a bed. All the doctors were nice and talked to us about the peanut study. I thought it was really cool that they were going to freeze my blood somewhere.

One of the first things they did to me was the skin test which makes your back sooo itchy!! Then they took some blood and put it in tubes to be sent off to be frozen! But first the blood had to be spun to separate the plasma from the cells and they showed me how! It was so cool! For the rest of the day I was given doses of peanut flour and played games and watched TV. The next day they doubled my dose, but I just got one dose.

While we were in Little Rock we learned a lot and found some hotels and places to eat. Best of all we found a Justice store!

I CAN’T WAIT TO GO BACK!

Good first trip to Little Rock -- the first of many. Pretty easy drive, about 5 hours. Big thanks to Grammy for staying with Meredith and the critters as mommy and daddy both wanted to make this trip. The plan moving forward is that mommy and daddy will take turns making the trip with one of us staying home with Meredith, Hank, Lucky and Lucy. For the most part we'll drive to Little Rock on Sunday and come back to OKC Monday afternoon but we'll probably, on occasion, head there on Saturday and take advantage of some of the "touristy" things.

Mom's thoughts....Day 1

I've worked really hard to get Madie to this point, but would be lying if I didn't say I was filled with anxiety. My mom helped me get past this, thank goodness for Grammy!

Arrived at ACH and were greeted by our nurse Karen, who was warm, supportive and funny. She put me at ease immediately. The entire day was one of enlightenment and affirmation that I had done the right thing. Madie was all strength and excitement. If only everyone faced obstacles like a ten year old! Madie had some minor reactions in throat, but don't know if that meant she received peanut flour or just had a reaction to placebo. The entire staff was amazing. Dr. Jones answered many of our questions and was available if needed.

Daddy's thoughts...

We're a bit tired so this posting isn't too detailed -- we'll try to do better tomorrow. Here are some more pics of the brave big girl -- with Dr. Jones, Nurse Karen and just some of the "fun" she experienced.