A Journey of Hope

Induction

Medications:

IV Vincristine

Oral Dexamethasone

IV PEG-asparaginase

Intrathecal Cytarabine x1

Intrathecal Methotrexate

April 18, 2011

Treatment: Day 1

"Hope"

Sitting here, listening to the IV machine beeping, as my beautiful Nadia sleeps so peacefully, I am filled with more emotions than my mind can contain. So wonderful, so funny, so sassy, and so sick; she hardly notices and seems annoyed at others who are sad. At three years old she understands that life is meant to be lived. God holds her so close.

It feels unreal to even say it out loud, my baby has cancer. Even typing it makes me cry. Oh how great heaven will be, but the things of this earth can be gut wrenching. I never, ever thought that I would be able to say that "I understand" when someone mentions their child has cancer. Yet, thousands of parents say it every day.

The pain that our baby will endure, as her tiny body is forced to kill her cancer and then attempt to flush it out, is something I PRAY SO HARD to be lifted from her. I know she has to walk this path, but Jesus, PLEASE spare her the pain. Give it to me, tenfold, and I will gladly bare it all!

Everything comes down to hope. Hope in God's will to be done, Hope that the journey will bring glory to God, and Hope that Nadia will live through this to tell an amazing story that brings others to Christ. If not that, then it's not worth it. We love you sweet baby, our Nadia Camille.

Always By Your Side,

Mama

April 19, 2011

"Tough Day"

Oh wow. Maybe it's the days meshing together, maybe it's the headache from the stress, or maybe it's the thoughts of what is about to happen, but today has been a really tough day. Her first IV, which was placed in her right elbow area, lasted much longer than it was supposed to, but today it ran out of life. We had to find a new vein in her left wrist. It's so hard because she doesn't understand why, and she really hates having any kind of Band-Aid taken off. The room was incredible though. The ceiling and walls have been painted to look like you are sitting in outer space! I thought it was really cool. Nadia did not.

As I climbed into the bed to hold her in my arms while they pinched and poked, looking for a large enough vein, I realized that nothing was going to help her feel calm. She didn't want the old IV, she didn't want the new IV, and she didn't want to be there. But she did it. And she did it well. She cried, but she bore the pain. This kid has more God-like character at three then I do at 36. She inspires me every day and I pray that tomorrow brings her peace.

Things We Wish We Had Known

(READ THIS FIRST if you are newly diagnosed)

Medications

Ice Cream or Apple Sauce

“Just Make it a Pill Please!”

I remember the beginning, as if it were yesterday. I remember the thick, disgusting medicine that made my baby cry. "Why Mommy?" Why do I have to take this?" I tried to be so strong for her, "You've got to take it baby. It will get rid of the owie inside. Please Nadia! Do this so you can feel better!" But it never made her feel better. It always made her feel worse, much, much worse.

The first ten days of diagnosis were certainly the most difficult when it came time for the medication. She was only three, therefore every medication arrived in liquid form, nasty, chalky, liquid that tasted horrific. I know, because I tried each one. It was not until about the 7th day when it occurred to me to ask for a pill form of the medications. Along with the pill, I requested a small, plain vanilla cup of ice cream. It worked like a charm! Thank God for this amazing discovery! We simply placed the tiny pills, one at a time, into a half or quarter teaspoon of the ice cream. We were very careful to be sure that the pill was hidden! "Open wide for your ice cream!" Every time was a success! And what is even better is that the ice cream helped to coat her tiny tummy against the pain that some of the medications caused.

Vin Christine and Constipation

Myralax Before the Push

“A Stool Softener Every Day!”

The Vin Christine was truly a medication that took major short-term and long-term tolls on Nadia’s little body. The nerve damage eventually left her with a zero reflex percentage, which has slowly redeveloped. I remember the nurses would always ask us the date of last time she had pooped before administering her Vin Christine. The reason is because the drug literally turns the intestines off. The muscles that were always moving no longer move, which leaves the waste to sit, and sit, and sit.

This is an area that I wish had been explained much more clearly. I believe that before we had left the hospital a nurse should have shown us the proper way to mix Myralax for Nadia, and given us some kind of chart on how much and how often to give it to her. The reason is because the Myralax was what actually moved her intestines. We gave her a stool softener every day, but it simply was not the same. She needed Myralax. I wish we had been shown in the hospital what to do, by mixing the powder with a cup of water.