June 29, 2013

When we first started going to NYC, we met two kids those first couple of weeks.  Justin who is now on his 6th relapse and Abigail who at the time was in remission and going through her 3f8 treatments, but who later relapsed.  Both of their mothers have been huge inspirations to me.  An important difference to be aware of here is that there are typically two different ways neuroblastoma invades the body; It can present as either boney disease or it can present as masses.  Kids like Justin have extensive boney disease. Boney disease can be very stubborn to get rid of and often those kids are the ones you see fighting this disease for five, six and seven years.  Then there are those children like Abigail.  Their disease never presents as being extensively boney.  Rather they have masses.  For some, their masses never respond to treatment and other times they respond well.  Of those that respond well, many relapse while a few go on to be free of disease.  These kids often lose their battles to neuroblastoma within three years or so because when the cancer relapses, the cancer is often more aggressive in the kids in a shorter amount of time.  Where am I headed with this?

Many people wonder, why are they still doing treatment?  Why are they going to MSKCC still? Why are they talking about going to Michigan for another treatment?  Isn't he free of disease?  Are they wasting time and money? I'm just not sure I get why they still need to do this stuff?  Let me paint a picture...

Abigail was diagnosed about 10 months before Clayton.  We are due for scans the first week of August.  That will also be the point at which we are one year NED.  It was at roughly this same time in Abigail's time line that she relapsed.  Her relapse took place this past Christmas.  Since then, her family has traveled from their home in Arizona to Michigan to Mexico and even California trying to treat the relapse.  The relapse has proven to be aggressive as neuroblastoma relapses often do.  Keep in mind, relapses can happen at any time.  The girl we met in January that was from Louisiana, had been NED for three years when she relapsed.  There is no specific pattern as to when a relapse might occur.  But it is because relapses can be so aggressive and because they are so likely to occur, that families continue to get maintenance therapy even when a child is free of disease as is recommended by neuroblastoma specialists.  What do I mean by aggressive?

Abigail's chemotherapy post relapse kept her cancer stable at best for a few months.  As these last few months have gone by, her cancer began to be less and less stable.  Both her chemotherapy and her alternative treatments seemed to be failing in the fight against neuroblastoma.  A one point this past month, her parents didn't even bother taking the time to do scans when they already new what they were going to show.  The cancer had grown.  Instead they wanted to do treatment without wasting any time for scans.  They tried.  Abigail's parents held onto their faith, but knew things had been getting worse.  I think it was Tuesday June 18, that Abigail's mom felt a lump on the right side of her neck.  She had the doctor check it out and they were going to watch it.  Thursday morning there were three more lumps beside the first.  Thursday night there was another lump on the other side of her neck.  Just that quick.  This is a nasty disease.  Unfortunately, what is happening with Abigail is all too common for kids diagnosed with neuroblastoma.  Her parents finally got to do a scan last week and this is what it showed:

"Abigail's scans on Monday were bad. The cancer is in her neck, upper lungs, and ALL over the mediastinum (the mass of tissues and organs separating the two pleural sacs, between the sternum in front and the vertebral column behind, containing the heart and its large vessels, trachea, esophagus, thymus, lymph nodes, and other structures and tissues;). The cancer is around her aorta and extends down to her diaphragm. She has "multiple metastatic lesions" in her liver. Her pancreas is hard to identify because it is atrophied. She has tumor on top of her kidney, on top of her iliac bone, and entangled in many ribs spreading out from the mass near her spine. It is destroying the bones where the femor connects in the hip. We also know from her bone scan in May that it is inside many of her bones, including her entire spine.

This is one way cancer kills....slowly destroying her little body parts. This is why cancer is painful."

Seven months ago, Abigail was running around a neuroblastoma warrior, with a head full of hair and disease free.  Tonight, Abigail is no doubt in her mothers arms as her mother rocks her back and forth.  Her brothers and sister are coping with what their parents have told them is coming and her parents are just trying to cater to Abigail's every wish to keep her happy.  Sadly, as is the case in these situations, between the pain and the narcotics, their little girl is already gone in many ways.  There is too much pain for her not to be sedated, yet the narcotics cause her to either be asleep or on the rare occasions she is awake, she is easily irritated.  Smiles are rarely seen, if ever.  Her parents are left to hold her and love her here on earth for days...maybe weeks or at best a couple of months.

So what are you doing tonight?  Where are your children?  Because in Mesa, Arizona, my friend is rocking her dying child and trying to cherish every moment she has left.  Because Abigail is dying and there is nothing on this earth that can change that or fix it.  She is dying and her family is left to watch the painful process knowing there is NOTHING they can do to change that.  

An innocent, just-turned-four little girl is dying and what the hell are we doing about it?  What are we doing to prevent it from happening again and again?  I'm embarrassed that I ever even blogged about the idea of being a politician.  Politicians aren't helping us fight for childhood cancer like they should.  All the politicians I see big and small only seem to be concerned with their bottom line.  What happened to the greater good?  What happened to working for the people?  These politicians who neglect to fight for childhood cancer, who neglect to make it a more important issue aren't any better than pathetic doctors who practice medicine with their egos rather than their hearts and their minds.  We need people in mass numbers, we need politicians willing to stand up and we need those doctors like our beloved team in NYC to make a difference.  These children do nothing...NOTHING...and yet they are burdened with this horrible disease and often times the slow painful death that accompanies it.  Why are people so damn OK with that they they don't do more or fight harder?  I'm ashamed to say that before it was my child, I was too naive to know better.  I wish there weren't so many people making the same mistake I was making.  At the very least, those reading this blog are better off than I use to be because they are at least learning if nothing else.  I was just oblivious.

I feel like I have evolved more than normal this past year.  I have learned from our experiences with cancer, everyday experiences with a child with special needs, from those who have so graciously helped to support us in our battles, from those that love us and even from those that don't love us.  I have gone from considering the idea of wanting to be a politician to being so ashamed of our politicians and our government that I wish George, Clayton and I could pick up and go live one of those "off the grid" life styles in Alaska or somewhere (for obvious reasons we can't).  It makes me sick thinking about the fact that as a whole, we are destroying our world and not fighting harder to save our children.  We are stuffing our bodies with genetically modified foods and poisoning not just ourselves, but the environment those genetically modified crops are grown in.  Did you know they have discovered a direct link between the loss of you thousands of honey bee colonies and genetically modified crops and the pesticides used on them?  European countries like France have already banned many of the chemicals and yet we keep on using them?  They call this vanishing of the bees, colony collapse disorder...how long before we have our own colony collapse disorder within the human population?  Or are we already?  How many of your children have severe allergies, weak immune systems or other health problems?  How many of us or our children suffer from headaches regularly?  How many of our parents have heart disease? High blood pressure? High cholesterol? Diabetes?  Obesity? How many of us know somebody who has suffered from cancer?  Scientists discovered that the genetically modified crops and their pesticides were causing a reaction in the nervous systems of bees.  The nervous system... Neuroblastoma is the most common solid mass childhood cancer and it is a cancer of the nervous system.  We don't know that there is a link between the two, but we don't know that there isn't...But links have been proven in the cases of radiation leaks causing cancers, chemical plants and high cancer rates in the surrounding communities.  These same links exist between these chemical plants and radiation leaks and a slew of birth defects.  So we do know that the chemicals we use today are harmful to us, yet our government isn't regulating it better and we aren't forcing them to do so.  We aren't forcing them to find specific links.  We aren't forcing them to protect us.  In many cases, we aren't even protecting ourselves.

Why are we doing this to ourselves?  To our children? To our environment?  Why aren't we forcing our government to take action to prevent further damage and start repairing the existing damage?  I cannot believe an innocent child would be sent here to suffer and die for no reason.  These children are sent here as lessons for us.  They are sent here to teach us patience, to teach us to better care for those things we love, to teach us to take care of the world around us and to take care of ourselves.  All of these things are gifts; our children, our bodies, our lives, our planet and we are slowly and painfully destroying all of these things and too many of us aren't thinking twice about it.  Why?  

Why do children like Abigail have to continue to die while the majority of us fail to learn the lessons they are put here to teach us?  So many children have genetic mutations causing severe problems...how many of those problems are caused by the toxins our society is producing and surrounding itself with every day?  Are we unknowingly making our children sick?  There is an awful lot of compelling evidence that says yes...we are.   This begs the question, what are we going to do about it?  

I know I spend some time on my soapbox, but I am trying to learn whatever lessons these children are here to teach us and I hope that those that read this blog learn something too.  Change has to start somewhere.

"Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not." - The Lorax