Sunday, December 20, 2009 9:09 AM, EST
Hello Family and Friends:
Last night was Dad's night turn at the Chateau. I would have to say that it was not a relaxing staycation this time around. The Cisplatin chemo drug that Sam is on is kicking him in the heiny!
He got sick a few times yesterday and last night, and when he wasn't sick he was complaining about his belly hurting. At 2:30 a.m he was wondering if it was wake up time yet because he couldn't sleep and was uncomfortable. The nurses have been great and have done a wonderful job keeping up on all his meds, and trying to keep his nausea at bay as much as possible.
We are SOOOOO looking forward to getting him unhooked and home tonight. Unfortunately he has to get a shot at 4:50 this afternoon before he can be released to go home. So it won't be until dinnertime before we can bug out of here.
Please continue to pray for comfort for him today. That is the critcal request for today, that the chemo will get out of his body so he can stopping feeling nausea.
Once we go home today, we will be home for 2 weeks before starting again. So, the praise is that we all be home for Christmas to celebrate the birth of our loving Saviour!
Thank you and God Bless-
Praying that you have a Very Merry Christmas and a Blessed New Year!
Sunday, December 20, 2009 7:17 PM, EST
SAM IS HOME TONIGHT!! He was discharged from the hospital around 5:00PM. It has been a long day and he has not felt well all throughout the day. He is now on day 2 of eating next to nothing all day long....we were able to get a few crackers and a few cheerios in him at the hospital but that is all he has had all day. He attempts to eat something and then says his belly hurts and he is full. I must say though that the minute we walked out of the hospital Sam's entire mood changed. He was just so happy to be going home. Even though he is not eating he is just happy to be out of the hospital and back home again. We are so glad to have him here and to have that break from the hospital. He will have to go back to the Hematology Clinic tomorrow morning to get a drug called Zoleodronic Acid- Sam is taking part in a clinical trial for Osteosarcoma and receives this particular drug after certain chemo's. After this appointment tomorrow Sam will be hospital free for about 2 weeks other than the occasional blood draw at a Close to Home Clinic at least twice a week. Welcome to the world of childhood cancer.
I am posting below a speech from a childhood cancer survivor that I would like for you all to read. I received this speech via e-mail from an Osteosarcoma group I am a part of online. I hope this will at the very least give you a glimpse into the world that Sam has been living for the past few months....with many months left to go. We need to find a cure! Please pray for a cure!
I want you to read the below a speech given by Sebastian Gillen, a pediatric cancer survivor.
When I was diagnosed with Stage IV Neuroblastoma, I was 8 years old. My doctor told my mother that I had two weeks to live. 12 years later, I'm still here.
My name is Sebastian Gillen and I am a cancer survivor.
So what is pediatric cancer?
Pediatric cancer is not being able to play with your friends on the playground because your platelets are so low that your body can't stop the bleeding and the bruising. Pediatric cancer is having to wear a mask every time you go out in public because your immune system can't even fight off a cold. Pediatric cancer is being an eight year old kid who's terrified of needles and having to learn to get stuck fifteen times a day and not shed a single tear. It's having a tube embedded in your chest, right in your vena cava, and two IVs in one arm, so you can't sleep on your side or your front. It's being tethered to a pump, your constant companion that beeps angrily whenever you need new fluids or there's air in your line, which always seems to be at the worst possible moment.
Beep.
Right when you're finally starting to have fun playing UNO in the playroom.
Beep.
When you're just about to fall asleep, desperately grasping at hours of precious respite from the pain.
Beep.
When you've almost forgotten, just for one second, that you've spent the past 6 months writhing in a hospital bed and that the next year isn't looking any better.
Pediatric cancer is losing your childhood along with all of your hair.
It was RFK who said, "Some men see things as they are and ask "why?" I dare to dream of things that never were and ask, "why not?"
People all around the world hear about kids getting cancer and suffering and kids getting cancer and dying, and they ask themselves "why?" Why do these kids have to go through so much? Why do twelve thousand, five hundred kids a year have to trade baseball bats, soccer balls and play dates for catheters, bedpans, broviacs?
Why does an eight year old **** have to run home and cry on her mother's shoulder because her friends don't understand the words chemotherapy, radiation treatment, or bone marrow transplant, and because she doesn't understand why she has to be the one who has to be so different?
Why does a seventeen year old boy have to sacrifice his chance to go to college because he lost his golf scholarship along with his leg? People all over our planet see these kids as they are, hairless but indomitable, and they can't help but cry.
Sometimes, when I'm reading the news, I see the world as it is, a world full of greed and malice and corruption, darkness, and I find it hard to see the light. But then I see these children fighting their hearts out, never blinking in the face of the blinding blackness of their deadly, private wars. I see these children and I remember how to dream. And in my dreams, I see every last one of them winning their battles and I ask, "why not?"
These kids fight for so long and so hard because they dare to do more than just dream. They dare to hope.
Hope that one day they can play tag and not have to worry about having to go to the hospital for two weeks because they skinned their knee on the gravel. Hope that one day they can actually feel what's like to run outside on a summer day again, go sledding again, be a kid again, instead of watching it from the other side of a window or TV screen. These kids lie in bed, staring at white plaster walls, hoping for miracles.
We all know that there's no reason why not. In honor of all of those who have fought and fallen, in support of those who continue to fight, and to spare those whose fight has not yet begun-- we can beat these diseases.
When I look out at this room, I see a room full of professional golfers. I see a room of people who have had the opportunity to grow up and live out a dream. Don't kids with cancer deserve the same chance?
Only research cures childhood cancer. I''m living proof of that.
Together, we can reach the day when kids just like me do get to grow up and our dreams become our reality. Together, we can cure childhood cancer.