Friday, May 4, 2012

hot lava


When I saw this I smiled at the memories because, of course, I played Hot LavaDon't Touch the Ground and SHARK! as a kid - jumping from couch to couch with my friends.  Then I cried a river.  This is all I want for Ty.  A fun childhood.  In his four years, he has smiled through the pain and we have tried to make his life as special as possible, but I certainly wouldn't say he's had a fun childhood.  He has been robbed of his childhood altogether and forced to be brave.  To grow up way too soon.  To endure daily suffering. 

Whan drawing his blood yesterday, the nurse felt terrible about sticking him.  She said something like, "I'm sorry, I understand, I still get very upset whenever I have to get a needle and I'm fifty!"  I would guess that most adults have had less needles in their lifetime than my four-year-old angel baby.  I know I have.  Poor Ty has had to grow up so much in his short life. 

Ty is in the oxygen chamber right now, he didn't want to go this morning and he gave us all a really tough time about it.  When he woke up he whispered "I want to go home now," and I said "Yeah, let's go!"  I should have been more careful about the way I worded it because when we got in the car he went into hysterics when I explained that first he needs his "rocketship" treatment and then we can go straight home.  I can't wait to update you all on how he's doing once we settle into the best place in the world.  H.O.M.E.  I am very excited to walk in that door and drop my bags to the floor. 

May is Brain Tumor Awareness Month.  In my research, I came across a presentation recently made to Congress, and I am pasting an excerpt below.  Click Here if you are interested in the entire speech and some of the ideas presented for addressing the various issues pertaining to research.  It is a convincing read and I hope Congress thought so, too.  It was written and presented by Nancy F. Goodman, Founder of Kids v Cancer and forever Jacob's mom.  Her story is all too familiar to me and so many other moms I know...



My son, Jacob, was your typical, wonderful eight-year old boy when he was first diagnosed: a sweet kid, a good brother, an able student, an enthusiastic athlete, and a passionate rock-and-roll keyboard player and vocalist. After some unexplained morning headaches and nausea, we were told that Jacob had medulloblastoma, a form of pediatric brain cancer. Jacob endured several surgeries, six weeks of daily radiation and many difficult chemotherapy protocols. He suffered severe neurological and cognitive impairments, including an inability to speak or, for a time, move. He was wheelchair bound, he lost gross and fine motor skills, he experienced significant memory deficits. Jacob had unmanaged pain, anorexia, nausea, baldness and multiple infections. He was hospitalized for months at a time. And still, unbelievably, he never complained and just focused on his friends, his family, and attending school as much as he could. Jacob died a year at age 10.

During our hard-fought efforts to save our son, we came to realize that Jacob and children with pediatric cancer are at a serious disadvantage when it comes to research for treatments and a cure.

All cancers are terrible and impose tremendous costs on the diagnosed. But childhood cancers are in a class all their own. The loss of a child to cancer is among the worst tragedies a family and a community can endure, the pain magnified by the knowledge that such an early death represents the loss of an entire lifetime's hopes, dreams, and experiences.

The impact of pediatric cancers on families and our society is devastating. Each year about 13,500 children are diagnosed with cancer in the United States, and for 25% of them, that diagnosis is fatal. Though some childhood cancers, such as leukemia, have seen significant improvements in survival rates, others have witnessed no improvements in decades. Many pediatric cancers, including Jacob's disseminated medulloblastoma are terminal upon progression or recurrence. Others are terminal at diagnosis.

More children die of cancer every year than the terrible terrorist attacks on our country just ten years ago. Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined. When a child dies of cancer, that child loses almost 70 years of life. Jacob was 10 when he died. He missed dating, graduating high school, going to college, finding a first job, getting married, having children. While we have made significant progress in addressing certain cancers, these numbers are still too high for any child.

For those children fortunate to survive their diagnosis, the vast majority face chronic illnesses and life-long impairments, including secondary cancers, impaired cognitive and social abilities, heart damage, lung damage, infertility and alternations in growth and development. In many cases, the toxic treatments themselves are the cause of life-long challenges. Childhood cancer treatments tend to be at relatively higher doses than adult treatments, and with those higher doses come more serious long-term effects. To put this in perspective, children with Jacob's diagnosis who receive radiation to their brain before age 8 may have a difficult time ever counting money and doing multiplication and division. Children who receive cranial radiation before age 5 may never learn to read or tell time. And babies who receive cranial radiation may never learn to talk. Had Jacob survived, he probably would not have been able to stay in his mainstream school, go to college, or live independently.

The image of a bald, frail child in a hospital gown on a fundraising brochure strikes a blow deep into the soul of a community that values and cares for its children, and for decades Americans have been opening their hearts-and their wallets-to support cancer research. But what people don't know is how few dollars of those dollars go to fight pediatric cancers and how much the pediatric cancer research community needs funds, new drugs and tissue to make real progress.

Much more needs to be done. It is time to shed light on the ways that we, as a country, are failing our children. Policy makers, regulators, health-care professionals, and parents must be made aware of the crisis that faces every new generation.


2 comments:

  1. I start this post with you don't know me which I'm sure you've heard many times. I'm an oncology nurse and work in clinical research in the adult setting. I am a Mom of a 6 year old little girl. I read your posts daily. I cry with you, I laugh with you, but most importantly I pray for you and your precious Ty. You are one strong Mom who is truly an inspiration to me and Ty is a true hero. Ty represents what true bravery and courage is all about! Just know many prayers are going up from Memphis for Ty, for you, and your entire family. Stay strong and continue your fight! You are all champions! :)
    All my best,
    Marnie

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  2. I hope you can catch some relief at home.

    We didn't get off to a great start, but if we really cram now I think we can achieve all our goals before pediatric cancer awareness month. The first thing I'm going to do when I wake up tomorrow morning is drink coffee.

    I am Lighthouse Lady, and I get stuff done. You can count on me.

    Sorry you are feeling sad for Ty not getting to live a normal childhood. I know its very painful for you. Luckily he has the very best mommy and daddy and he is LOVED. He feels that and nothing compares to that.

    C

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