September Cancer Awareness...

When someone hears the words childhood cancer you think of a child that is about 3-13 years old. This is what the news reports on all the time. The news worthy stories that play on the heartstrings of everyone watching.

Childhood cancer is defined this way:

 Childhood cancer is cancer in a child. In the United States, an arbitrarily adopted standard of the ages used are 0–14 years inclusive, that is, up to 14 years 11.9 months of age. However, the definition of childhood cancer sometimes includes young adults between 15-19 years old.

I am sorry, but when did 15-19 year olds become full adults? You have to be 21 to drink and 25 to rent a car, but at 14 years and 11.9 months you are no longer a child when it comes to cancer??? EXCUSE ME but does this seem odd to anyone else? “Young adults” cannot drive at 15, they haven’t graduated nor can they vote. But when it comes to cancer and the treatments thereof, they are adults. Make A Wish also has a harder time making wishes come true for the “young adult” cancer patients. My question is why? How can this be?

Let me state for the record that September is both Childhood Cancer and Blood Cancer awareness. I find this very interesting that Heather ended her cancer treatments in September, 2008, both my and Bill’s birthday and anniversary are in September. It is also when fall begins. The coming to the end of summer with Labor Day holiday. It seems to be the closure of a lot of things.

The official color for childhood cancer is yellow or a goldenrod, leukemia is orange and lymphoma is lime green. Blood cancer in general is the color red. All of the colors of fall as well. The problem is that no one knows about September. There are no big ads or commercials about these types of cancer. Like I have said before, I am not taking anything away from breast cancer, but everyone knows the color is pink and it is the month of October. Even the NFL wears pink everything to honor breast cancer.

The following statistics are mind blowing:

Worldwide, it is estimated that more than 175,000 per year, are diagnosed with cancer and approximately 96,000 CHILDREN per year die from cancer.

More than 96,000 families will deal with the death of their child because of cancer.

In the United States, cancer is the second most common cause of death among children between the ages of 1 and 14 years, exceeded only by accidents. More than 16 out of every 100,000 children and teens in the U.S. were diagnosed with cancer, and nearly 3 of every 100,000 died from the disease in the United States in 2012.

The most common cancers in children are (childhood) leukemia (34%), brain tumors (23%), and lymphomas (12%)

The leukemia death rate for children and adolescents younger than 15 years in the United States has declined by 80 percent from 1969 to 2010. Despite this decline, leukemia causes more deaths than any other cancer among children, adolescents and young adults younger than 20 years.

There is more to the story than this too. I find it odd that my blood related half-sister had a daughter that had blood cancer when she was 13 months old. What are the odds that direct related cousins would both end up with blood cancer? I was not raised with my sister so this is not environmental. It has to be genetic. Something to be concerned about for sure. The second strange event was that Bill had a coworker that had followed Heather’s cancer journey. When Heather was admitted to ICU he came to visit and told us that his then 3 year old daughter had just been diagnosed with ALL-Acute Lymphoblastic Leukemia. I have no doubt that as parents they were terrified to see what happened to Heather unfold in front of their eyes. I have no doubt that every parent reading my blog from day to day was saying thank goodness I am not Sherry. It is okay I would and did say that same thing once.

Heather was 19 years old when she began to have symptoms of Lymphoma/Leukemia, she was 20 years old when she was diagnosed and then she was a whopping 21 years old when she died. She was still a child, a baby and believe me, she was a child who only wanted her momy when she was sick and scared. She was an adult in the eyes of the Childhood cancer, but she was still a child. All children that face cancer grow up and become very mature very quickly. They face more in a short amount of time than we as adults can even imagine. We were not able to be treated at Phoenix Children’s Hospital will all the internet and cool things to do. We were never contacted by Make-A-Wish to make a dream come true. (I did that on my own) Local newspapers and television stations did not cover her cancer. She fell between the cracks of child and adult.

I hope each one of you will stop to think about September with all the fall colors of orange, red, yellow and green and remember childhood cancer and blood cancer awareness month.

Imagine...

Remember the day your daughter was born? The hopes and wishes you had for her?  Maybe she was your first, middle or last child and possibly your only daughter. She had you wrapped around her finger and you would do anything for her. As you would for any child but there is something really special about a baby girl-your daughter.

Remember walking her to school? You had to let go and turn her over to other people that you really did not know but had to trust for her education. What about making friends? You listened eagerly as she came home with bright eyed excitement to tell you about her day. The new girls she met, the teacher she did not like or the bigger kids that she longed to be like someday. It was a time of homework and chores.

Summer came it was time to relax and maybe go on vacation. Remember the trips across country? Playing the count how many gas stations or Stucky’s road stops there are? The long endless freeway heading hopefully somewhere fun. Did you get to take the kids to Disneyland? Remember their excitement as they saw with wonder for the first time all the magic that is Disney? Remember taking the character photos and having your daughter cry because she has wanted to meet Minnie Mouse for so long she can’t control her emotions?

Then came the heartache of junior high and high school. The roles for the plays not gotten, or the special someone that was “going out” with someone else. Your daughter looking to the day when she can drive and you are worried already about the other 50 million other drivers. Looking towards graduation when she will wear the cap and gown and then head off to college? Watching her with pride as she walks back up the row and blows you a kiss in her cap and gown. The whole world watching but she doesn’t care.

College came and went too soon and now she has met that special guy. As you busy yourself with all the planning of her wedding. You as mom, go with her to pick out her dress, pick flowers and maybe if you are lucky you get to throw the shower. As the dad you get measured for your tux as you are the checkbook guy and then your only job is on the big day to walk her down the aisle.

As the day gets closer the excitement builds. Mom has her rightful place as mother of the bride, which is nearly as important as the bride. You beam with smiles and a few tears in your eyes as the usher walks you down the aisle to your seat. You stand as the music plays and you look as the bride and her dad slowly walk down towards the front. You have never seen her look more beautiful. Dad is holding on for dear life as he knows his role is nearly done and he will hand over his baby girl to the man standing and waiting for her. He has not looked forward to this day from the day the she was born. His job is to give her away and try not to cry.

Weeks, months and years go by…as time flies by so fast and suddenly your baby girl is going to have a baby of her own. You watch and plan with great expectation to the new coming life, a new baby, a grandchild. As a parent there is nothing greater than the day you become a grandparent or Mimi in my case. As the day gets close you learn this baby will be girl…precious like her mommy. You hold your new granddaughter in your arms and you realize all over the incredible love you have for a part of you.

The days come and go and you get to see your daughter, her husband and the new granddaughter. You do many firsts with them and see how much the baby is growing and learning. As she begins to know who you are it thrills your heart when she wants you to hold her.

Now imagine…your daughter that is 26, married and has a baby, died four years ago. There was no college graduation, no dating, and no walking her down the aisle, no son-in-law and no granddaughter. Your perfect little world simply faded out of existence. The day your daughter died was the day a part of your future died too. There is no wedding, no grandbabies, and no holidays together or family vacations. It all simply disappeared. Never to exist again.

To have a parent die is to follow the natural order and your past dies with them. When a child dies you lose your future. The “what could have been.” It is a totally different experience to go through. I will not apologize for stating that having a child die is the worst kind of loss and pain there is. PERIOD!!! A death is a death and it is a huge loss and leaves holes in families and those people are not replaceable. I get that. I really do. My adopted mother died when I was 9 and my daddy remarried and I go a new mother. Yes I called her mom-replaceable. She wasn’t the same as the other mother, but she was my mother nevertheless.

Beginning today, I no longer will apologize for talking about Heather too much. I will not stop mentioning her name. I lived it therefore I have a right to talk about it however I see fit too. If you don’t like it or it makes you uncomfortable then maybe it is time for you to find other friends because I am not what you need in your life and I certainly do not need you in mine. It is okay this road is not for the weak and it does get very tiring. But if you are sad and it is difficult for you to hear and listen about, imagine how difficult it is for me since I lived and live it every single day. I am never going to get over this.  It will take me my lifetime to try to heal.

Check out my new website for the book:

www.myporcelaindoll.com

Remembering-the Same for Everyone?

Everyone remembers what they were doing on 9/11 2001. It was the worst attack on our own soil in history. We remember stopping and being riveted to the TV and not able to get enough information about what was happening in our country. So many people lost and many families just don’t even know what happened to their loved one. On that day they just disappeared.

Heather was not able to sleep and was down watching TV when Bill came down to go to work. She said something happened in New York with a plane crash. Not much information was known but Bill made her turn back the TV to see what was happening. Bill and Heather watched live as the second plane hit the towers. It was time to wake up the rest of the house and let us know our nation was under attack.

This was and is a horrible day in our country. The 1000’s of lives lost and all the first responders that went running into the building while most everyone else was running from the building. Our country stops to remember this day-a solemn day to think about all the people who died on that day.

Fast forward to September 11, 2008. While the rest of the country remembered I was bringing Heather home for the last time. This was the last time she would have to be hospitalized for chemo again. Her treatments were finished. We packed up our things and left the hospital with no fanfare, no parade, nothing we just simply left the hospital as quietly as we came in. The rest of the day was Heather sleeping and me trying to unpack and see if we could begin our lives again. I honestly did not remember that it was 9/11 till the news came on. It had slipped my mind. I was so focused in my own life that I did not remember that event that changed our country forever.

Here it is September 11, 2013 and everyone on facebook and the news is all about us remembering this day, remembering the fallen, remember those that gave their lives on this day. While I understand this from my view as a grieving mother I wonder why? Why remember? It has been 12 years after the fact aren’t those families over their loss yet? Can’t they move on? Get over it? Let go? Now you may say I am being horrible and cruel, how could I tell these people to get over this? The world needs to remember this forever.

My daughter wasn’t a first responder, she wasn’t a Wall Street person on the 50^th floor of tower number 2. My daughter fought cancer. My daughter belonged to me. My daughter happened in my life and my world. She has only been gone for 54 months. Why I am expected to move on? Why do people want me to let go? Why do I have to forget and put her behind me when the rest of the country is allowed to grieve for fallen heroes and many people who were never known before? They are remembered because they died on 9/11. Like I said, she wasn’t a hero to the world, she was a simple beautiful 21 years old young woman that bravely fought cancer with everything she had. She endured more in a year and 10 days more than most of us even imagine.

I am not making fun of the events of 9/11. I am simply putting this in perspective. The world is allowed to grieve for people who died doing something heroic but I am not allowed to mention my daughter. The country still takes moments of silence on 9/11 to remember all the people who died and on April 20 most people are terrified to text me to say they remember Heather today.

I ask that as the world stops to remember the ones that died today that everyone remember that when my Heather died it was the same for me as it is for all those families from 9/11. The loss is still the same, they are gone and Heather is gone. A loss is a loss not matter how it happened.