Friday April 27, 2012see more by jen
Doesn’t that smile just melt your heart?
You can see his strong spirit shining through, no doubt giving his family the strength they need to get through each day. Can you even fathom it? I can’t even comprehend.
But here are the facts:
* 1 in 300 kids will be diagnosed with cancer before age 20.
* Each year cancer kills more children and adolescents than any other disease.
* The incidence of cancer amongst children in the US is rising almost 1% a year.
* Only 10% of the money budgeted by the National Cancer Institute is directed to pediatric cancer research.
Money is desperately needed for research to find causes, better treatments, and a CURE for pediatric cancer. No child, no family should have to endure this diagnosis.
In one week, on May 6th, Team Tiny Orangeswill be in Irvine participating in the Pediatric Cancer Research Foundation Run/Walk to raise money to support pediatric cancer research.
I hope you might be moved today to want to do something to help – you can click HERE to make a donation of any amount on my fundraising page. Or click HERE to make a General Team Donation. Even donations of $5 or $10 will add up. I urge you to take two minutes right now to make a quick donation. You will be making a difference in a child’s life.
* The cancer death rate has dropped more dramatically for children than for any other age group.
* This is attributed solely to research.
* 80% of all funds raised by PCRF goes directly to research.
Now those are just statistics, but behind those statistics are babies, children, and teenagers and their families fighting this disease. Children like Brody.
My neighbor was kind enough to let me share Brody’s story with you. I think it is such an inspiring story about strength and intuition and hope. Here is what she wrote…
“This story began around October.
My nephew Brody started having what we thought were reflux issues at 7 months. My mother (Grandma) felt that this was an odd time to start having trouble keeping food down but there is so much reflux going on, it got lost in the reflux shuffle at the pediatrician’s office. He also had torticollis around the same age or earlier. So his head/neck tilted slightly to one side.
Brody is the first and only child of my sister and her husband. Grandma attended each Doctor’s appointment and kept trying to tell the pediatrician that something didn’t seem right (she is a mother of 4).
We traveled as an extended family to Hawaii over the holidays. Brody had an appointment scheduled for early January to see a gastro specialist. During our vacation, Brody threw up much of what he took in which was mostly formula and baby food. It was progressively worse as the two week vacation progressed. Brody had lost weight and was clearly not feeling well some of the time but his energy and spirit are so amazing that he kept us from worrying too much.
In early January, Brody saw the gastro specialist who prescribed a special medicine to help keep the food down. This did not work. A few days later, my brother in law decided to stay home from work with Brody and ended up taking him to the ER that afternoon. He was transferred to CHOC. They ran all kinds of tests and kept him overnight. All gastro tests came back negative.
By the following day, Friday, January 13th, they decided to do an MRI of his brain. My sister and her husband were both at the hospital. My mother and I instinctively decided we should also drive to the hospital. Within minutes of our arrival, we were all escorted into a conference room with a ton of doctors (including medical school students) and a social worker and we were told that Brody had a 2 inch by 2 inch tumor on his brain stem.
I will never forget that day.
Nothing can prepare you for that kind of shock. There are no words to adequately describe the feeling. Kind of like you are floating. I had recently become a big Grey’s Anatomy fan and I had this surreal feeling that I was somehow a part of a TV episode. This was not about our family. This was not about our Brody. This was not possible.
We knew that this was very serious when Brody was immediately scheduled for surgery 3 days later. We met with a topnotch CHOC neurosurgeon who kept telling us how very very serious this was and how tough it would be to get all of the tumor. The barrage of medical information was overwhelming. Was it malignant or benign? Was it definitely cancer?
It was so frightening.
Time moved in slow motion.
My brother in law and I met with the neurosurgeon who told us all of the things that could go wrong during surgery. It was like he was preparing himself for battle (the surgery) and we were witnesses to his private thoughts. I was amazed by how much frightening detail he shared. He scared us to death. He was not very positive about the possible outcomes.
That doctor would eventually become our hero.
On Monday, he successfully removed 99.9% of Brody’s tumor – all that could be seen by the human eye. He gave us a thumbs up after the surgery. That was one of the longest days of my life (our lives). There was many of us gathered in the waiting room trying to keep our thoughts positive but we were petrified.
Then the real waiting began.
A sample had been sent to topnotch hospitals to analyze the tumor. While we focused on Brody’s healing (which was amazing to watch – how quickly children can heal and bounce back), we researched and researched and wrote to everyone we knew trying to get thoughts and feedback and ideas of where to go to treat whatever Brody had. The results of the biopsy were taking too long. We began to be concerned by this.
We finally received the terrible news that Brody had AT/RT, a brain cancer that affects about 30 kids per year. The odds of this result were astronomical. We didn’t know what had hit us. We had been researching the spectrum of brain tumors in terms of seriousness and prognosis, etc. This was the worst possible outcome.
By some miracle, we learned about a doctor at Children’s Hospital Los Angeles who specializes in brain tumors with AT/RT as the basis of 20 plus years of research. We met the doctor, fell in love with him and his positive outlook on life, and Brody was at CHLA within days.
My sister, brother in law and Brody have basically lived in hospitals since January 13th. Brody is much loved on the 4th floor of CHLA. The nurses come in to visit just to see him smile and wave. Brody has been amazing. He has been poked and prodded and poisoned with chemo yet every day he graces us with smiles and claps and laughter. It has been amazing to see him bringing us strength.
Brody is receiving his 4th round of chemo. This doctor does not believe in radiation at this young age, so my sister and brother in law will soon be faced with a very very serious decision. Do you expose this young child to radiation to kill this monstrous cancer and hopefully save his life yet possibly leave him with long term issues/disabilities/consequences from the radiation? This will be a tough tough decision. Would love any feedback/experiences from your readers.
There are so many more details between the lines of this story – about the many different ways that each person grieves and handles crisis and tragedy, about family and friends and community pulling together and how much strength is garnered from that, and of course, about the importance of research for pediatric cancer!!
There are friends who don’t know what to do with my news. They don’t know what to say. They have no concept of what we are experiencing. They know only their daily lives. There are others who are right there for us and incredibly supportive. It is amazing to observe. It is like the discomfort that some people feel about dealing with or talking about death.
Before this, this kind of story was not ours. It was the story of a neighbor or a friend of a friend of a friend. I always felt very sad when I heard these stories and counted my blessings that we were all healthy.
But now, it IS our story and pediatric cancer is a big part of our lives.
Research shows that there is historically only about a 10% survival rate for AT/RT. We feel so strongly that Brody will fight this fight and make it…… There is just something incredibly special about him. So far, he is doing incredibly well and the doctors are very very encouraged but of course, no one really knows what will happen. I guess God knows. So, we can only put our faith in Him and in Brody and in our amazing doctor.”
Team Brody will be out with us at the event on May 6th. Please click HERE to make a donation of any amount to Team Brody. Team Tiny Oranges will be there to support your family!! And we will have your family in our thoughts and prayers.