By: Barb Kronback
You’ve got the deer in the headlight look.
You’re on a rollercoaster that is traveling out of control. The bottom has fallen out of your life and it will never be normal again. These are all feelings you will experience when your child has been diagnosed with cancer. How do you survive?
These tips will help you start to get your feet under you again.
1. Swallow your pride and accept any and all offers of help, whether that is bringing your family meals, cleaning, taking care of siblings, or running errands. When someone asks you how they can help, be honest. Don’t say you are “alright”, because you’re not.
2. Purchase or have someone else get you a hanging shoe bag. Put sample sizes of your hygiene products in the pockets. Slippers, vitamins, hair brush, anything else you need on a daily basis, so that when you have to go to the ER in the middle of the night, everything is ready. Keep it in a suitcase that already packed so you don’t have to worry about packing. Have books and games also packed for your child and yourself.
3. To keep track of medications. Have a calendar and different stickers for each medicine. Put one on the bottle and then when you give that medicine, put the same sticker on the calendar. This makes it so much easier to keep track of all medications and not worry if you forgot a dose, or if someone else is helping. This way they will know what to do.
4. Try to have someone with you when you have meetings with the doctors. You will be on information overload and may have a hard time understanding everything they are throwing at you. More than likely you will be sleep deprived also, so this person can take notes and jot down questions for you. Ask questions about anything you don’t understand. There is no dumb question. Remember you know your child best and are their only advocate.
5. Take care of yourself! Sleep when your child is sleeping. Make sure you eat everyday. Now you probably won’t feel like eating or be hungry, but you need to force yourself to have something. If you get run down you won’t be any good for your child. Keep snacks in the room like trail mix, fresh fruit, cheese sticks or yogurt. These are things others can buy for you. Keep a notebook handy to jot down anything you think of so if someone asks what you need, you’ll have it handy.
6. It will be hard but BE POSITIVE! Don’t let negativity into your child’s room. If you cry (and you will) do it where your child won’t see you because it will just scare them even more. Remember Laughter Is The Best Medicine! Watch comedies or cartoons with your child, the more they laugh, the better they will feel.
7. Depending on your child’s age, let them have control of the TV remote. They have lost all control over their life, and this is one thing that will make them feel they have control over something. You’ll probably go insane watching Sponge Bob marathons, but it is so worth it to see the smile on your child’s face.
8. Don’t stay in your child’s room 24/7. Get out and take a walk. Talk to other parents and share encouragement and prayers. When able, let your child meet other kids so they don’t feel so alone.
9. Set up a Caring Bridge site as soon as possible or have someone do it for you. This is a site to journal your cancer journey for family and friends to read, so you don’t have to make or field a zillion phone calls everyday. (www.caringbridge.org)
10. Make sure you have your child’s favorite blanket, stuffed animals, toys or pjs with you whenever you go to the hospital. Pictures of family members help too. You want to give your child comfort.
Remember – cancer doesn’t affect just your child, it affects the whole family.
By: Gen Chamblee
I used to see St. Jude’s commercials on tv and thought, “I can’t imagine what those parents are going through.” All the kids had the same look to them. They were bald and had something in their eyes that said, “help me.” I never dreamed that my child would end up looking like one of those kids. I am guilty of being one of those people who says, “cancer won’t touch us, it won’t happen to my child.”
The cemetery where my husband’s father is buried has a section called “The Garden of Angels” and when ever we went to visit his father, I never wanted to drive past that area because of how sad it made me feel that all of those children were gone. Again, I couldn’t imagine. Now my precious daughter is buried there.
How surreal it is. It’s mind boggling how life happens.
I still can not believe Sierra is gone. Some days I wake up and expect to hear her sweet, little voice in her bedroom. But then reality hits me that I will never see her face again. Never hear her voice, never see her smile, never give her kisses again. Cancer ripped her away from me. At night all I can do is lay there and replay the moment she passed over and over in my head. It’s in every way possible, complete torture.
Every time I walk by her empty room, it feels like someone is stabbing me in the heart. I read about her and choke up. It is truly the worst thing that anyone can go through. She will forever be 2 1/2 yrs old. Her pictures on the wall will never change, and all I have are the memories in my mind.
So many have asked me how I can start up a foundation so soon after Sierra passed? How could I go through pictures of her and sit down to write out her story? That I must be so strong to be able to do such a thing. You want to know how I did it? I’m not strong, I’m angry. Furious. I have never been so mad in my life at anything as I am at cancer. It messed with the wrong family this time.
I want the world to know who my beautiful Sierra was. I don’t want another parent to feel the pain I feel. The agonizing, ruthless pain of losing a child.
I have become a different person since January of 2010. I was introduced to the world of childhood cancer in the worst possible way. And now it’s my turn to do as much as possible to open the eyes of everyone who thinks it can’t happen to their child. Because guess what? IT CAN.
Pumping pure poison into childrens’ growing bodies is appalling. But you know what? It’s one of the only choices you have when the Dr. says, “your child has cancer.”
It’s so hard to fathom that only 3% of Federal cancer research money goes to childhood cancer. Neuroblastoma gets even less than that. Every single day 46 kids are diagnosed with cancer and 7 of them day each day. Neuroblastoma kills 1 child every 16 hours. And all we can get is 3%? Are you freakin’ kidding me?
Why are people so hesitant to give? I donated to St Jude’s numerous times before Sierra was ever diagnosed.
Cancer has no rhyme or reason. It doesn’t discriminate. Not one single person in this world is safe from it. It destroys everything good in this world, and it doesn’t care how old you are or how much money you have.
I get so angry when I think about it. People don’t realize how prevalent cancer is among children. It’s a world that people don’t want to think about. But it’s time everyone wakes the hell up and opens their eyes. Kids do get cancer and kids do die from it.
No one knows what Sierra went through on a daily basis.
Imagine a little girl no heavier than 20 lbs, on a ventilator for 3 ½ months, receiving enough sedation to kill an adult, blood transfusions two times a day, numerous chest tubes, addicted to narcotics, endless x-rays, scans, and IV pokes. Close your eyes and imagine huge amounts of poison being pumped through her veins, and adult poison at that. We have children’s Tylenol and children’s Benedryl, but after all these years, there is no such thing as a children’t chemo drug. Then she went through 9 ½ hours of surgery to extract this horrible thing. She battled pneumonia, and terrifying blood infections. And let’s also mention that she coded on two different occasions. To think though, Sierra never made it to stem cell transplant, radiation or antibody treatment. There were SIX pages of side effects for ONE chemo drug.
These kids fight for their lives, and then have to worry that the cancer doesn’t relapse. If it doesn’t – they truly survived. But, it’s not over. Now every day for the rest of their lives, they have to counter act all of the side effects from treatment. And then on top of that, they still have to worry about secondary cancer. But you want to know what was truly amazing about Sierra and all of these children? They smile every step of the way.
Childhood cancer is real people. You don’t want to have to learn about it the hard way like I did. You don’t want wait & be holding your child in your arms as they draw their last breath to wake up and fight back.
It’s totally unacceptable.
My child was not one of the lucky ones. And unfortunately, many of them aren’t.
But are you ready to open your eyes?
SCREW YOU CANCER!!!
By: Heather Sullivan
Jack was diagnosed with this monster in 2009, since then our world has never been the same. When someone utters the word cancer to you, it sends chills down your spine. Imagine being a mom and hearing this. I am a stay at home mom with five children. We have one younger than Jack. I wrote this to help you through your journey with your child.
Cancer can do a lot of things! When we found out that Jack had cancer I told my husband we will not let cancer rule our lives. Sometimes in life you have to stand up and fight and don’t look back. We travel 700 miles one way for his treatments. We travel as a family so here are some tips on how to survive trips to the hospitals, and living outside your home.
1. Do not take one day for granted. Cancer can rear its ugly head at anytime! Every child is different and their cancer is unique to them.
2. Have FAITH! Without the faith we would not have gotten this far, you have to hold onto something in these trials.
3. Get SUPPORT! You need to have a support system in place. Sometimes you need a shoulder!
4. Plan ahead. We always pack to-go bags for the kids, it has their favorite candy, drink, something to do in the car, and a note telling them how special they are, and they are a big part of our family. You see, cancer just doesn’t affect one person, it affects all around us.
5. If you have to stay in a hotel, find one that is kid friendly and one that offers breakfast and perhaps a snack at dinner time. They are out there, you just need to look.
6. Don’t let the nurses push you around. My child has been through hell and back and doesn’t like to get poked. He would rather have the gas mask than be poked. We had one nurse argue with us, and I politely told her that we will come back a different day. At that point the Doctor walked in and said we could wait till he was asleep. Prolong the suffering if you can!
7. Let your child be a kid! Jack always comes out of the hospital with his IV; we try to do fun things that he will like, such a going to his favorite movie, or restaurant.
8. Bring pictures to put around the room if you will have an extended stay, this makes it more homey.
9. Reach out to the different organizations, there are a ton out there.
10. Participate in anything that will help with research for our children. Research saved us from five rounds of chemo.
Do not be afraid of your child’s diagnosis, this is not a death sentence. Just know that no matter what, someone out there has already walked down this path, and they want to reach out to you!
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