Thursday, August 29, 2013
Today marks the one year mark of Austin's Leukemia treatment. On this day one year ago we were sitting in the Oncology clinic being overwhelmed by what we were being told. No parent should ever hear those words: "Your child has Cancer". The last 12 months have been full of ups and downs, joy and sorrow, lots of pain and stress and tears. A few ramblings about what I have learned in the last year:
1. I hate Cancer!!!! Nothing scares me as much as wondering if all of this torture will in the end be powerless to stop the Cancer from returning and killing my boy. I have lost hours of sleep in the last year worrying and worrying. I hate that Cancer has done this to us.
2. All you need is love. I have been amazed at how many people care about my sweet boy. Whether it's by donating money, cleaning our home, bringing us meals, or just big hugs and well wishes, so many people have helped us out in the last year. I wish I could thank everyone individually but will leave it with a huge, heartfelt thank you.
3. No matter how bad things get, it could always be worse. Joining this crazy cancer world, my eyes were opened to all the different kinds of Pediatric Cancers. So many of them are much much worse than what Austin is going through. I am so grateful that he "only" has Leukemia. It's all about perspective.
4. Being a parent is hard. The hardest thing I have had to do in my life is watch Austin be sick or in pain or be poked while I am powerless to stop it. I dread giving him his pills as much as he hates taking them because I know they are slowly poisoning his body. I feel immense guilt when he is throwing up or in pain. No parent should ever have to watch their child suffer.
5. I am not in control. This is probably the hardest lesson to learn. It brings sheer panic as it dawns on you that nothing you can do will change the circumstances, that you are powerless. Ultimately learning this lesson can bring incredible peace because if you can accept that you are not in control, you can then accept that God IS in control. This is a daily lesson for me as I try and try to demand that I AM or at least should be in control.
6. Humility is a tough pill to swallow. I have always had a hard time accepting help from others. I am used to being the strong one, the one that others look to. Admitting that I need to accept help from others is very humbling.
7. I am not superwoman...and that is ok. Sometimes the house doesn't get clean, the laundry piles up, I can't work extra hours at work, a church calling is put on hold...in fact some days the only thing that I have to show for the day is that the kids were fed (even if Mcdonalds did the cooking). Some days I can't muster much more than survival but that's ok.
8. It's ok to cry...in fact it's good to cry...a lot.
9. Never underestimate a Momcologist. Nobody knows their kid better than a Mom. I am grateful for doctors that listen when I say something just isn't right or are open to doing things my way. I admit to hours of on-line research and obsessing over ways to make things easier for Austin. After all there isn't an Oncologist on the planet that cares about my boy more than me.
10. Time goes on. As hard as the last twelve months have been they have gone by quickly. Austin has 2 1/2 years left and while that sounds like an eternity today, I know it will go by fast.
What Austin says he has learned in the last year. These are directly from him, I asked him to think of some good things as well as bad.
1. I hate Cancer!!!!!!!!!!!!!!!!!!!!!!!!!!!! (he typed the exclamation points)
2. I have to be patient. 3 1/2 years of treatment is a long time!
3. I like to be hypnotized. It helps me relax and feel less pain.
4. I like how many people care about me and am amazed at how many care.
5. I like how I feel after getting blood. My energy comes back and I feel better!
6. Good things about having cancer:
A) Camp Hobe--I loved this week long camp!
B) Make a Wish-- I can't wait to go to Disney World.
C) Meeting the great people at the hospital. I love the Child Life Specialists, they make my treatments easier. It was fun to spray Michael with silly string.
7. Bad things about having cancer:
A) Being poked--having my port accessed, getting lumbar punctures--I hate it EVERY time!
B)Being bugged ALL THE TIME. Doctors appointments, home health nurses, vital sign checks, "How do you feel?", Mom taking my temperature...over and over. Sometimes I just want to be left alone.
C) Taking pills...a lot of pills...every day....yuck.
D) I hate feeling sick. I really really hate throwing up.
So here's to one year down, two to go. Keep fighting my Cancer Warrior! I love you so much and am so proud of you. You will beat this! Keep that gorgeous smile of yours. It brightens my day and makes us all happy.
Friday, August 23, 2013
One morning out of the blue, Austin's feet started bothering him. The skin on his toes and balls of his feet are sloughing off creating red, angry wounds. In addition, the cuticles around his toes are sloughing off and becoming infected. To top it off, he has a nasty, painful rash on his hands. I have been really worried because its a great way to get a nasty infection. He was started on an oral antibiotic (Keflex) and we checked his counts again. His ANC was only 800 and Platelets 142 so the Oncologist decided to hold his oral Chemo for two weeks and recheck his counts then. I went to the wound clinic at the hospital where I work and they gave me some special foam to put on his feet and some bandages to cover it up. When I got done wrapping his toes he was left with two colorful ice cream cone feet. It didn't do much to help his feet heal, but it was funny and entertaining to take pictures of my handiwork. He probably thinks his Mom has lost her mind.