Go GOLD!!

No, I'm not competing for a medal and I'm not shopping for jewelry. I'm talking about going gold for the kids. Kids like my Mikey. Kids who know all too much about the medical field at a very young age. Who have mediports, have surgeries, receive chemotherapy and radiation and lose their hair. Kids who have cancer.

Everywhere I look I see pink. Pink ribbons everywhere. Signs saying that October is Breast Cancer Awareness Month. The only problem is, it's not October... it's September. Breast Cancer Awareness Month isn't until October. September, and I'll openly admit once again that I didn't know this until Mikey was diagnosed with cancer, is National Childhood Cancer Awareness Month. It's a month for the kids!

I keep a Caring Bridge site for Mikey. I write EVERYTHING there. I am very open about what happens to him and what he goes through. I write about mediport accessing, chemo, vomit, exhaustion, walking.... it all goes on there. It has to... I am only one mom, I can only remember so much. It's my way of journaling so that I can look back and say things like, ' oh yeah, he had diarrhea at this time of the chemo cycle last month too'. It's also my way of telling everyone who cares about Mikey and our family what is going on so things don't get lost in translation. Calling and repeating what happens at a doctors appointment over and over and over again just doesn't do it. I call Mikey's Caring Bridge site a two-fer for me... a journal for me and a source of information for our family and friends.

On September 1st I posted about Pediatric Cancer Awareness Month on that Caring Bridge site. Although, lately it's been called Childhood Cancer Awareness Month. Today is Childhood Cancer Awareness Day. It's a day for the kids who have cancer to be recognized as actual children. Not just statistics. They aren't numbers or medical records. They are kids. One of them is mine. He's 4. He likes to play and laugh and sing. He can't go to school but he can flush a mediport line with the best of IV nurses. He is funny and has a big sister and a little brother. He is a computer whiz and loves math and the alphabet. He has sight words. He is small for his age but the fight he has in him rivals any professional boxer. He is 4 and he has cancer. And this is a month for him.

This month is about the kids! Things should be GOLD... there should be gold ribbons everywhere. There should be signs and fundraisers for the kids. It's not October yet. I don't want this to sound like I'm picking on breast cancer, I'm not at all. I know so many amazing warrior women who have had breast cancer. They are resilient, strong and wonderful women! There needs to be a cure for breast cancer. Breast cancer has it's month though, it's October. Right now, it's September. And September is for the kids!

I'd like to share some facts about Childhood Cancer:

** One in 330 children will develop cancer by age 20.

**Each day, 46 children are diagnosed with cancer. That's over 12,000 a year.

**Each child in the U.S. diagnosed with cancer receives approximately one sixth of the federal research support allocated to each patient afflicted with AIDS. Yet in 2004, 48 new cases of pediatric AIDS were diagnosed versus more than 12,000 pediatric cancer cases.

** The National Cancer Institute’s (NCI) funded research portfolio on 2009 was $3.1 billion. Of that, breast cancer received 22%, prostate cancer received 11%, and all 12 major groups of pediatric cancers, combined received less than 3%.

**The American Cancer Society provides only 1.85% of their research dollars to Pediatric Cancer.... that's ALL 12 types of pediatric cancer combined in that 1.85%

** Cancer accounts for the greatest number of disease deaths of children in the United States and kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

**Children are treated with drugs that have been tested for and marketed toward adults and pharmaceutical companies don't test oncology drugs for children. Approximately half of the drugs used to treat children are at least 20 years old.

** Childhood cancer is not a single disease, but rather many different types that fall into 12 different categories.

** Overall, one out of every five children diagnosed with cancer dies. In some forms of cancer, as few as one out of every five children will live.

** Approximately 20% of adults with cancer show evidence the disease has spread, yet nearly 80% of children show that the cancer has spread to distant sites at the time of diagnosis.

**Recent reports show that 2/3 of Pediatric Cancer survivors experience significant medical problems resulting from their original cancer and/or its treatment.

*******

All cancer is horrible. It's horrific. I, in no way, shape or form, want to offend anyone by this posting. We need a cure for all cancer. Right now though, our kids need us. This is their month. Show your support for the kids! There are so many places that you can donate money to in support of research for a cure for these cancers that affect children... The St. Baldrick's Foundation, St. Jude's Children's Research Hospital , Pediatric Cancer Foundation, Alex's Lemonade Stand, Glad to Give & Cookies for Kids Cancer just to name a few!

Your support doesn't have to cost you a penny though! You can always...

**Tell everyone you know about how someone you know (or even someone you don't know!) how you, or someone you love, has been touched by childhood cancer.

**Offer to volunteer at a local childhood cancer center

**Let a family you know who has been touched by childhood cancer know that you are still there for them and thinking of them, care for them and are praying for them!

**Let the family of an angel know that they, and their angel, are still in your heart.

Can any good come from bribing your child??

It's round 2, night 2 of chemo. He's 4. We have chemo nights. Chemo nights! How the hell did this happen? When did it become routine to have chemo nights? Anyway... I digress...

It's round 2, night 2 of chemo. Round 1 was a disaster. He took it the first 4 nights. Got horribly sick overnight on night 1 but nights 2-4 he was ok. Night 5, he didn't even absorb the chemo before he got sick. We repeated the dose again the next night. Same thing happened. Sick before he cold even absorb it.

I am a paranoid wreck this time around. I don't want my kid to get sick. I don't want to be the one giving him medicine that will make him be sick. But I don't want him to have cancer either. So I give him the medicine. And I make sure that he keeps it down. I give him Zofran and then a dose of Ativan. I laughed at them when they suggested that! Ativan? A narcotic? Seriously? He's 4! Then reality set in... I guess if I can give him chemo, I can give him a narcotic too, right? So I give it to him. It's supposed to calm him down and make him less anxious taking the chemo. I wish someone would give him that message. He seems to have missed that memo.

Round 2, night 1 was ok. He took 1ml of the chemo and wasn't handling it well. I knew we were in for another 'spitting it out' before absorbing it.

So, I went there. The place you SWEAR as a parent you are NEVER going to go. You know that absolutely NO good can come of it. That there is NO turning back once you go there. But I went there anyway. I did it. I bribed him. I told him that if he took his medicine and didn't 'spit it out' (as he so politely calls throwing up) I would give him a surprise. (Thankfully I had a DVD that I knew he wanted hidden in my bedroom) He looked at me funny but he took the chemo! He took it and he didn't spit it out!! I was so thrilled! We waited the 15 minute absorption time and I ran upstairs to get the DVD! He was SO excited. I knew at that moment why so many people frown on bribery... because, even though it tends to work... it becomes an expensive tool to get what you want.

But then I realized... in our case... a lot of good can come from bribery. If I bribe him to take the chemo and he takes it and if the chemo will keep him here with us longer then I'm all for bribing him with whatever he wants.

Not the meaning of life... but not too far off the mark

Life is not a competition. It isn't about whose problems are bigger. Or playing games of 'tit for tat'. Or looking past the good parts of your life to find the bad. Or purposely playing the part of a martyr.

Life is about learning. And teaching. And believing. And stopping to smell the roses. And being there for those you love. And friendship. And family. Life is about love.

Look past the nonsense. Not to be a cliche but really, don't sweat the small stuff. In the end, it's all small stuff. Where you live. Where you went to school. Where you work. Sure, it's important to have a home and a degree and a job... but what good is any of it if you aren't healthy & happy? If you don't have a family to share it with? A healthy child to hug at the end of the day? A friend to spend time with?

I have 3 children. I sweat the small stuff sometimes. The nonsense that plagues people every day. The lines in the grocery store being long, the price of gas, the messy house, the humidity of a hot summer NYC day... but just as I start to complain about the small stuff, I stop and remember... I have 3 children. They are all here with me. I can hug each one of them any time that I want and kiss each of them good night 100 times as they fall asleep. They are the loves of my life.

This is a blessing that comes from having a sick child. When I say a sick child, I don't mean a child with a cold or a 24-hour stomach bug but a SICK child. A child with a life-threatening disease. I know all too well that in one day your life can change. Whether it's the day that you receive the diagnosis, the day that the doctors give you a prognosis... or a day that I can't even think about happening but has happened to too many families that I know and care about. In one day life can change. Drastically. In a way that haunts your nightmares. And then would I really care about the length of the line at the grocery store? Not at all... I am willing to bet that I would be willing to wait in line on a hot summer day at a grocery store with no air conditioning with a full bladder for 4 hours and have to stop and spend $100 to fill my gas tank if it meant that I could go home to the messiest house in creation and hug all of my kids.

If you have your health. Your child's health. A loving & supportive family. Even one good friend... then maybe you have to admit that you don't have such a horrible life. That you shouldn't look past the good parts of your life to focus on the bad. Maybe the stuff you complain about isn't so big and you should concentrate on being grateful for what you have.

Just my thoughts for the day...