Some Facts on Childhood Cancer

To my faithful readers - 3 posts in a span of one week! All part of my goal to increase awareness about Childhood Cancer Awareness Month. Nothing against breast cancer awareness as so many of my friends have had it and I am so thankful that advances make their prognoses so good, but what about the kids? When your child is diagnosed with cancer so many things change. 1) For many, one parent must stop working to bring the child to their treatments and check-ups, therefore an income is lost and in some cases so are insurance benefits ; 2) the hassle of insurance in the first place. I will say it has come a long way. A friend whose cousin had AML back in the 80s told me that upon diagnosis, the hospital placed a lien on her aunt and uncle's house to ensure payment. We have come a long way since then, but so many people have deductibles that put them into debt or have to fight way too hard for necessary treatments. It is simply exhausting on top of everything else;
3) The emotional toll on siblings and other family members cannot be put into words and so on top of the parent worrying about the patient, they must deal with the many issues that inevitably arise with their other children. Many siblings feel overlooked by their parents, jealous of the sibling with cancer, some even feel guilt that they may have done something to cause the cancer;
4) Finally, when all is said and done, and your child has made it through 2-3 years of treatment, you sit back and wait. You just wait with dread worried that it is going to come back and that your child will have to endure longer, stronger treatments with a poorer prognosis. And while you wait for those magical 5 years to pass before you can considered your child cured, you try so hard to resume a normal life...to let your child not be the cancer kid anymore.
So why does childhood cancer awareness month get overlooked...because the greatest advocates for awareness - the parents and the patients - are being worn down by so much more.
So as someone who should and must advocate for awareness I present to you, on our humble blog, the unacceptable facts and statistics about pediatric cancer:

Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents.

One in 330 children will develop cancer before the age of 20.
On average, 46 children are diagnosed with cancer every day in the United States. Approximately 12,400 children were diagnosed with cancer in the year 2000.
Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.

Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.

In the past 20 years only one new cancer drug has been approved for pediatric use.
Only 3% of the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3% for ALL kinds of Pediatric Cancers combined!)

The incidence of childhood cancer is increasing. The cause of this is unknown.
Pediatric cancer funding is nominal in comparison to other more publicized diseases such as pediatric AIDS or juvenile diabetes which increases awareness each year.

Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and exposure to cancer-causing agents. The cause of most childhood cancers is unknown.

Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.

The government recently CUT the budget for Childhood Cancer research. -
As a nation, we spend $14 BILLION (that is with a b)per year on the space program, but only $35 MILLION (that is with an M)on childhood cancer research per year.

There is a bill before congress to restore funds to pediatric cancer research. Please check the link below to see if your senator has signed the bill. I see only one of my senators has (I am not a Democrat, but Lieberman has always been a man of priniple - Dodd is apparently too consumed by his hopeless presidential bid to sign this act)
http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN00911:@@@P

And is you haven't seen this video, please check it out. Yes, it is disturbing to watch, but hey, a lot of this is everyday life for people. And look at the smile on most kids faces. If only we adults were as strong and resilient as our children.
http://youtube.com/watch?v=AGS4yE5v9rM

New Pictures!!

The first picture is Catherine in front of her school.

The second one is while we are waiting for the bus (all the kindergarteners had the orange tags to help the busdrivers and the teachers)

The third picture is Alex in front of his classroom - can't you see his excitement

The fourth picture is Alex playing in the classroom

And the last picture is on the soccer field - Dave is wearing his Manchester United shirt!

Alex Starts School

This week, Alex started pre-school and I have to say, it went surprisingly well. Unlike Catherine who just walks into any situation without looking back, Alex is an observer who likes to hang out a bit before participating. Well, he certainly fooled me. After telling me all morning that he wanted me to stay with him and that he didn't want to go to school, his teachers said he had a smile on his face the whole morning and he participated. Alex told me he had so much fun and again, unlike Catherine who I have to sometimes drag information out of, Alex told me all about his day. It was very sweet. He couldn't wait to tell Catherine that he went to school just like her and as soon as she came off the bus, she asked him how it went.
Otherwise, things here just continue to get busier. Catherine started real soccer. On Fridays (after our trip to Guilford), Catherine has practice which is run by these guys from Britain who do serious drills. Then on Saturdays, the Dads coach the games. Dave is one of Catherine's coaches and I think he had more fun than her. The practice and the game wore her out (granted, it was like 100 degrees those 2 days). I always have to remind myself that she does not have the stamina of a normal 5 year old. Nevertheless, it is very cute and Alex is right there trying to get on the field.

One final note, I purposely posted today, 9/11. It is amazing how I can remember that day so vividly 6 years ago. And this year, unlike other anniversaries, 9/11 is a Tuesday. I remember it was my first day back at work after mine and Dave's bike trip through Austria. It was an absolutely picture perfect day, not a cloud on the sky, which made me feel good as I had to fly down to Florida on business that evening. Then, Dave called me to tell me that an airplane hit the WTC. My father-in-law worked in the WTC and Dave wanted me to look out my window and tell him which Tower was hit (I worked on the 50th floor of a building that had an unobstructed view of southern Manhattan). Everything after that was just controlled chaos. And just as some of us were trying to decide if we should leave the office, the North Tower fell right before our eyes. It was very surreal. I will never forget the remainder of the day. I knew my father-in-law was okay. Ironically, he was the only one who was able to get through to me. I had no idea where Dave was (he worked downtown at the time). I walked back up to our apartment with a friend (and thousands of others) and listened as fighter jets flew overhead. Again, all very surreal and something I hope we never experience again. So many of the people who responded to the WTC are developing blood cancers and just today, there was an article in the paper about how the EPA has grossly underestimated the reach of the poisons that spread throughout the air in those days. It has always been my own little theory that Catherine's leukemia is a result of 9/11. I didn't know I was pregnant with her - I was probably about 6 weeks along. Something tells me that I will never know if my theory is true.
So once again, I end one of my posts on a down note (I really need to change that practice). I am going to finally post some new pix of the kids so that should make up for it.

Kindergarten Starts!!

Well, Catherine started Kindergarten last week. As usual, I was more nervous than she was. Quite frankly, I don't think she was nervous at all - just excited. Her teachers are a set of identical twin sisters who share one contract, so they alternate days and then rotate each Friday. I know it sounds weird, but I know people whose kids have had them and just sing their praises. And, despite the fact that they are identical, you can tell them apart, and they are married, so they do have different last names (I get that question a lot). I must say kudos to the school district for being so progressive in allowing these teachers to share a contract so that they can spend time with their kids.
The school bus has been going well also. Not surprisingly, Catherine just runs for the bus and doesn't look back for me. The sad one in all this is Alex who pines for his sister while she is gone. He doesn't start school until next week. I finally met a lot of my new neighbors at the bus stop and I am happy to say that there is another new family on the block with a daughter in Kindergarten. Catherine loves having a little girl on the block her age and has already made an impromptu visit at the house to play outside. Of course, one week into this and much of the excitement has started to wear off and I am already struggling to wake them up in the morning. Should be a lot of fun come winter time!
I also want to add that I met with the school nurse and principal to discuss Catherine's situation. I strongly believe she is very good hands. The nurse used to work at Sloan Kettering so she is familiar with leukemia and the principal has assured me that they will take care of my lovely daughter.
So with Catherine now in the public school system, I am being sucked into all the volunteer stuff. I feel like I have coffee after coffee, the first PTO meeting is in 2 weeks and I will be expected to help inside the classroom. Between school and after-school activities, it is going to be a very busy year!
So that is my update. I am going to try and post again next week and give Alex his due with the start of pre-school.
Just to make you all aware, September is Childhood Cancer Awareness Month. Please go to www.curesearch.org to find out how you can help bring an end to the nightmare of cancer in kids.
Thanks