To 2017 & A Lifestyle To Love

I was really surprised over the holidays when George’s mom expressed that she thought our lifestyle (small house) was only temporary.  Once I considered her words, I realized my mother too had expressed her own doubt at times wondering if we would one day want a larger house if we made larger incomes.  Thinking about this, I realized that if our own mothers think our lifestyle is temporary because of circumstances with Clayton, then most people might.  So I’ll set the record straight.

I cannot say enough with enough passion…George and I LOVE the way we live and the lifestyle we are building for ourselves.  We aren’t fresh out of college deciding to backpack across America or to build a tiny home on wheels.  God willing there are plenty of years ahead for how we live to change, but we aren’t “testing” something out.  We fell into this way of living by accident/necessity with Clayton and his very unique circumstances.  And once again Clayton and all of his awesomeness bestowed a wonderful gift upon our family. 

We found that we wanted a simple life.  We wanted a life with less “things” and more adventures.  We want a life that will focus on the outdoors and family.  We want a small house that requires less time to clean and maintain and simultaneously promotes togetherness with our family.  There are no playrooms, craft rooms or man caves to escape to; instead it is our family together in front of the fireplace or talking while Clayton’s cartoons play in the background.  We don’t want to kill ourselves with the responsibility of a high paying job that makes us sacrifice our well-being, sanity and family time.  Instead we want to follow a path of making a healthy living balanced with healthy stress levels and healthy relationships with each other.  And while we are raised in a world where that idea is mostly scoffed at and seen as a dream, guess what?  It’s not a dream and it’s more than possible.  Furthermore, it doesn’t mean we have no ambitions, if that were true, George would not have just graduated after going back to finish school.  All it means is that we have acquired the perspective to balance the ambitions, health, wants and needs of our family.  And we know that our family is a team, we function together and we put each other first.

Where our perspective came from…

On November 22, 2011, our three-year old son Clayton was diagnosed with stage IV, high risk neuroblastoma (form of pediatric cancer) and we had no idea how long we might have with him.  When something like that happens the things that go through your head ARE NOT:

“I wish I had made more money.”

“I wish I had caught that episode of Grey’s Anatomy.”

“I wish I had spent more time at work.”

“I wish I had stressed over work more.”

“I wish I had a bigger house.”

“I wish I had a fancier car.”

“I wish me and my family wore more designer/popular brand clothing labels.”

“I wish my house was in perfect order.”

“I wish people thought I had it together and my life was grand.”

“I hope people don’t see my flaws.”

“I wish my house was full of antiques.”

No.  Not even close.  What DOES go through your head are things like…

“Dear God, don’t let my kid die.”

“What the hell is happening?”

“How, how the hell did this happen?”

“How much time do we have?”

“Why the hell did I care so much about watching the damn TV that I didn’t give him the attention he deserved.”

“Why the hell did I ever give anything the opportunity to overshadow him…ever.”
“What the hell is wrong with me.”

“Don’t take him from me before I have a chance to be what he deserves.”

“He is the only thing that matters.”

“I promise we will change our ways.”

“I’m never going hear him call me momma”

Nowhere in my list of regrets in those moments and days was there anything pertaining to living a fancy lifestyle or a financially demanding lifestyle.  Because that doesn’t matter.  Not even a little.  I mean sure I like quality things, and I do have quality items, but not at the expense of anything that matters.  And what matters is Clayton and the life we are building with him.  He doesn’t need parents who drive fancy cars or wear name brand clothes or pay a big mortgage on a big house with a playroom or whatever is trending these days.  He needs us.  And he needs us to pay attention to him.  Which sadly is not something our current society emphasizes with technology. 

Where our perspective has taken us…

When we are little we are shown this window to the world in which we are suppose to carve our own niche, but we aren’t always given the chance to consider alternatives.  Instead we are pulled toward this world where mom and dad need to go to work and work like crazy to pay for the house that is way more than they need, over-accessorized cars, iPhones for all, wardrobes to keep up with the Jones’ and the ridiculously priced toys and accessories everyone wants…you know what I’m talking about… golf carts, 4-wheelers, boats, etc.  We are somehow taught or shown that this is what we “need”; That those are the things we are suppose to work towards. 

NO!  NO!  NO!  Those are not the things in life that we “need” to work towards.  And if it weren’t for Clayton, George and I would probably be chugging along working towards those things too.  But Clayton taught us the secret to life…NONE OF THAT SHIT MATTERS!  And so we choose to take the path less traveled.  The one that we feel is more rewarding.  I apologize if this sounds as though I am judging anyone.  All I can say is that I am judging a lifestyle I once thought was my future.  A lifestyle that I thank God everyday, I learned early I didn’t need or want.  

So now as we start this new year, we are more settled than ever into our new and improved lifestyle of changing our views of what we “need” and focusing on what really matters.  We were in survival mode for so long after Clayton’s cancer diagnosis.  Then the past couple of years we were gifted with a little more time than normal to think about what we wanted in life and what direction we wanted our lives to take and how life with Clayton had come to shape us.  What we found is that our lives had miraculously lead us to this perfect-for-us building block to build off of. 

So to our moms (and I’m sure plenty of other people) who don’t really understand how we can be satisfied for a lifetime with some of the ways in which we are choosing to live…All I can say is we are happy.  We have almost no clutter bogging us down; our roots are fairly shallow and give us the freedom to explore and live a life of adventures; we have found joy in our lives while providing for our basic needs and those needs of Clayton and we manage to sneak in a few splurges here and there just to add a little extra dose of happy without stressing us out in anyway.  Our minds, spirits and our time are freer than they have ever been and we are finally decompressing from our journey.  And while we are enormously flawed human beings, we found a way of living that leaves us more grateful for our gifts, closer to God and closer to each other.  We would not trade where we are for anything and have no desire to ever revert to any other lifestyle. 

To figure out if your life works for you you have to ask yourself a few things:

• Is this lifestyle I think I want worth the sacrifices I will have to make to have it?
• What am I sacrificing to have this life? Time with my kids? Having kids? Time with my family? My health by being chronically overstressed?  Family values I hold dear? My sanity and peace of mind?
• Do these things I think I "need" really make me happy or are they just a bandaid for a deeper problem or insecurity?

Maybe you'll find your meant for the life your trying to live...or maybe you'll think a little more about what you believe to be most important in your limited time on this earth.  

Whoever you may be, peace and love and joy to you and yours.  Without our struggles, we would not also feel the immense joy we have been blessed with.  So here’s to 2017 being full of new adventures and less “stuff”…

Fighting the Flu...Naturally

I was out and about the other day and a woman beside me had a friend walk up to her with a bag of cough drops saying how she had just recovered from the flu the day before, yada-yada.  I couldn't put enough distance between me and them fast enough.  If you have cooties stay home.  And if you have to get out, which happens to most of us, be respectful to others and be mindful of your germs please.

That said, if your like me and want to avoid the flu, here is my tried and true Elderberry Syrup recipe.  I swear by this stuff.  A couple years back Clayton had a confirmed case of the flu and literally coughed in my face constantly while cuddling with me or having me hold him and thanks to this stuff I did not get sick.  Because no, we don't do flu shots.  Bad experiences with flu shots specifically.  

A recap of my stance on vaccines:

Cliff notes version is I believe every vaccine is the same and every person is different and therefore, you can not expect the same results every time.  Scientifically, it doesn't make sense in my opinion.  I do think vaccines are wonderful and am grateful for them, but I completely disagree with the idea of blanket coverage for everyone one except for those with currently compromised immune systems due to things like chemotherapy.  Obviously those people get exemption, but I also believe other people that have a history of sensitivities/reactions to things and have multiple underlying conditions should have the choice to opt out if they feel it is in their best interest without being shunned by doctors or schools or communities.  I feel that if you choose not to have your child vaccinated for idealogical reasons that you should be willing to home school your child not necessarily for the health of others, but also for the health of your child.  I think vaccines have brought our society a long way and we should respect that simple fact.  But we also need to better respect, as a society, that vaccines are not right for everyone.  We also need to, as a society, demand transparency on vaccines starting at the top.  If parents are expected to give their children vaccines, then they should be able to know everything there is to know about that vaccine.  As for Clayton specifically, I do not believe his vaccines before age 3 have anything to do with his autism.  I opt not to give Clayton most vaccines because he has a history of being overly sensitive to things, having poor reactions to things, being immunocompromised and has multiple underlying conditions.  For more on how I feel about vaccines, read HERE.

The purpose of elderberry syrup is to boost the immune system.  Historically, elderberries have been used as a natural medicine with great success.  Elderberries, combined with the other ingredients in this syrup, make for one natural remedy that I have been using for a couple of years and absolutely swear by.  I have also started giving it to Clayton this year.  I give him a half a teaspoon every couple days or so.  I like to be very cautious with him, so I don't yet give him the full teaspoon daily that is suggested.       

  

Elderberry Syrup Recipe:

1/2 cup dried elderberries

2 cups water

3/4 cups raw unfiltered honey

1 tablespoon ground ginger

1 teaspoon ground cinnamon

1/2 teaspoon cloves

In a small pot, combine water, elderberries and spices.  Bring to a boil.  Reduce temperature and allow to simmer, stirring occasionally, until mixture is reduced by half.  Once reduced, strain mixture to separate elderberries from liquid (I like to strain with cheesecloth).  Squeeze excess liquid from elderberries.  Add honey to remaining liquid.  Combine thoroughly and let cool.  Transfer to jar and store in refrigerator.  

Daily dosage up to:

1 teaspoon for children

1/2 tablespoon for adults

                                   

It makes your house smell amazing when you make this syrup!

Stay well!

Invasion

So last week we lost our rooster.  He was a good rooster.  Skiddish, but plenty nice and I never had to worry about him being aggressive around Clayton.  The weather was so beautiful, that I let the chickens out of the fenced in back yard a few times to scavenge elsewhere.  Well apparently, I let them out once too often, because he was snatched by a coyote.  All that we found of him were piles of feathers.

But he died doing what he was put on this green earth to do which is to protect his ladies and his babies.  And while I felt bad for letting them out and thereby allowing this to happen because we have a perfectly good back yard and a perfectly good chicken run, I felt better knowing it was likely very swift and his final days were absolutely AMAZING weather.

It's funny, last year after losing some of her livestock, my neighbor commented that sometimes she forgets she lives in the wild.  Isn't that true of all of us though?  Our world is their world and we just push animals from their homes most of us thinking nothing of it.  Its hard to hate the coyote for doing what he does which is hunt for food.  We live on untamed property and one of the things I love about that is that it provides a natural habitat for various species whose homes have been taken from them as we push the boundaries of our cities and neighborhoods more and more.  We've relocated a few animals who have been pests and we have shot the ones threatening our chickens in their coop, but otherwise, we try to leave them alone.  They don't bother me (my chickens), I won't bother them.

This past fall, we got George's 14-year old lab set up on the back porch since she could no longer control her bowels and had such trouble walking.  We would bring her in when we went to bed, but earlier in the evenings when it was time for the chickens to roost, the rooster would come keep her company her first few evenings.  It was the weirdest thing...but sweet.

I distinctly remember growing up listening to my parents talk about all the places that use to be different when they were growing up.  Particularly my dad, because his family use to own a good bit of property that he use to hunt right here locally that now you could never imagine has having ever been anything, but back to back houses.  I didn't live with him and when he would come to town he liked to ride around and check things out...I heard lots of stories on these rides.  Now as an adult, I look around and see the same things and think the same thoughts as I'm sure my dad was on those rides. I live in what was once the country.  I live on the same property on which I was born and raised and I travel the same roads I have traveled for nearly 30 years.  I cannot describe how much it has changed.  What was once farm land and cow pastures is now neighborhoods and churches.  It's sad.  Makes me feel like we are an invasive species.  We are aren't we?  At some point, we as a civilization, decided we had the right to conquer everything and we haven't stopped since.  We barely consider how our explorations and population booms have any affect on the land and the animals that call it home.  And for those people that do consider it and try and make a difference they often get labeled as crazies and liberals, etc.  Well if caring about the earth God put us on and the beautiful things that God put on this earth with us makes one a crazy, then count me in.  Regardless, we should all take the time to consider how our actions and ways of living are affecting our planet and the animal that inhabit it and in turn how these things affect us.  The things that we do on this earth have so many health consequences that we cannot even begin to imagine.  Rather than embracing and caring for our natural world we are trying to create a controlled-synthetic environment and in the process causing harm to ourselves, our children and generation after generation to come...All while sacrificing the amazing natural gifts God has provided to us.  But I digress...

Who knew the loss of one rooster could cause such a tangent? I'm going to stop now because this could keep going.

The point is we owe it to them to do better and to be better and to think about more than just ourselves.

Texas Travels, Alabama Homesteading

I wrote this within days of getting back from Texas and really have no excuse as to why it's just being posted...

We just got back from the great state of Texas.  FYI Louisiana is the most boring state EVER!  If you disagree, take a drive down Interstate 20.  So far I must say it is my least favorite state.

Anyhow, we had a good visit with Clayton's orthopedic surgeon...and the dentist.  I think I've mentioned before how much I love the dentist there and why we make a point to see them when we do ortho.  If you don't remember it's because almost ALL of their patients are special needs and not only are they equipped to accommodate any and all of those needs on site, but they know how to work with these kids to get the job done while inflicting minimal trauma.  Love them.  And what I love even more is that we had a GREAT visit with them.  We found a new way to hold Clayton for exams that rocks my socks off because even though it upsets him, it is easier on everyone...including him.  Oh, and we have to hold him in some form or fashion because he has not yet reached a point of cooperation in the dental arena and we have to get stuff done.  The report was awesome one year after his extensive dental surgery from last year.  Remember the snowstorm in Dallas? Yea, me too.  They said his teeth look great!!!  I was slightly concerned curious how the report would go because we aren't perfect with dental care and he only brushes once a day and yes a day slips by every now and then.  Plus I use a special tooth paste.  Clayton does not spit.  What goes in his mouth stays in his mouth and I could not stand the idea of my sweet man swallowing mainstream toothpaste with unknown ingredients every night.  So I searched and searched for a toothpaste to set my mommy woes at ease.  Enter Earthpaste.  Yes, I said Earthpaste.  All you non-organic believing folks can laugh now.  But the joke isn't on us because the dentist was thrilled and surprised by how awesome Clayton's teeth were doing after what they started with last year.  So I am a believer through and through.  I fully contribute his now superb dental health to two things he drinks almost all water and he uses Earthpaste.  So if your wondering about Earthpaste, it's made by Redmond and you can order it online.  It isn't as affordable as mainstream toothpastes, but you can make it yourself for much cheaper than you can by it.  Just search for DIY Earthpaste Toothepaste.  There are lots of variations.  Whether I make it or buy it, it's worth it for me since I feel safe with the ingredients that I am putting in my child's mouth every night.

On to Ortho...that went pretty great too.  Here is the run down:

• Clayton's curve is about the same as last year which is great because it's not worse.  This could be due to the fact that according to the doctor the spine undergoes rapid growth through year 6 and then it slows down.
• We will keep doing check ups while we wait for Clayton to get as old as possible before fusing his entire spine.  When we do cancer scans in Pensacola, they include his spine and send a copy to the ortho surgeon in Dallas.  In addition, we will keep visiting TSRHC doing check ups and X-rays and dental every six months to a year.
• We will be fusing his entire spine, but we need to let him grow as much as possible.  In the doctors words, 12 years would be a home run, but he does not think it will be able to wait that long, so we are thinking this surgery will take place around 10 years old.  Knowing that we have X amount of time is nice for us and allows us to make plans and such.
• And last, but not least because it is of the utmost importance, the doctor is not concerned at this time with his respiratory status.  If Clayton's curve does not get worse before his future surgery, then hopefully his respiratory function will stay the same and not decline.  However, there is great potential for it to decline if his back gets worse, so we just watch him for changes and report back to the doctor.  If it becomes a problem, we might do the surgery around 9 years old.

As for homesteading, it all came from Clayton.  When my sweet innocent three year old got cancer, it made no sense.  None.  And while different people handle things different ways, I looked for answers.  I could have been angry at God, but my findings led me to be angry at man.  Angry at man for our stupidity in how we live, what we eat and how we are destroying this earth and our bodies and how we will pay a price for that and most of all, how our children will pay a far steeper price.  So I threw myself into this world of organic and natural living; testing the waters in certain areas and diving head first in others.  And it isn't easy.  I don't live in an area of the country where these notions are popular.  I have been laughed at more than I care to say.  Funny thing is though every time someone laughs at me about something it isn't long before a news article comes out in which the science seems to be backing up my beliefs.  When this happens I can't help but smile and laugh to myself a bit.  Obviously I am no pioneer in this natural living movement, I just found it when I needed answers.  There really are a lot of people out there trying to live this way because they have seen the benefits of it and so many wonderful ladies who blog their journeys down this path.  But I digress...

As for me and my boys well, I'm not sure at what point you can call yourself a homesteader, but if we're not there yet, we're striving towards that goal.  What does that mean for us?  Producing as much of our own food as possible, hunting, gathering, reusing and up-cycling, living more energy efficiently, etc. 

So far we are raising chickens organically for eggs and occasionally eating an extra rooster for meat.  We are trying to garden (our soil needs improving right now as it use to be all pines so we've only done so-so in this dept., but this is only our second year)  We've added rabbits...for meat.  No I'm not a monster, rabbits are a healthy, free, sustainable source of meat that if we like rabbit can supply us with lots of organic protein.  They cost us nothing because they eat grass, weeds and kitchen scraps.  If we decide we don't like rabbit then we won't breed them anymore and our parent rabbits can live a long happy life with us.

Additionally, we are implementing rain barrels to provide water for animals and to water the garden.  We got rid of our broken push mower and replaced it with an old school reel mower.  No more gas and oil and broken engines for us!  And instead of buying a weed eater which we never had, we got a scythe.  Bring on the crazy comments.  And other then the small section of our backyard that we use, all the rest is wild and maintenance free.  No cost, no energy use, no nuthin'!  I'm hoping in the next three years we can add a low cost solar system on the roof.  Just enough to run a few things for now and maybe we can grow it later.

Anyhow, these are just some of the things we're doing and we are always trying to add more.  If things are free to do thats awesome, if they cost money, we do it as we can (translation: we get it donevery slowly).  But this is how we are choosing to live and we love it.  Our goal is to live minimally, live healthy and to live as eco friendly as we can.  Unfortunately for anyone who attempts this lifestyle, it isn't easy.  We live in a world that makes if difficult to live eco friendly and to eat healthy.  Not impossible, but either difficult or full of temptation.

I have to give George props, he enjoys much of living this way, but would not have found his way there on his own.  However, he usually lets me drag him along as I experiment with new things here and there.  He's a trooper.

The point to this is I love living this way and am going to start posting about it more and more so heads up that you'll be seeing that...

Winding Down...

So two Fridays ago, I ended up in the ER.  I was home with Clayton and started having chest pain that radiated through my left arm and up through my neck and head, all on my left side.  I am not a hypochondriac nor am I am one to freak out about pain or bodily cramps.  But I had never felt anything like this and with all of our stress with Clayton, my getting older and my being overweight (I've gained 25 lbs since Clayton got cancer), I was a bit worried.  Since my normal doc was not in, I went to the ER to be safe.  They did all kinds of tests to rule out anything life threatening.  The diagnosis was unspecified chest pain.  It seems to have been a severe anxiety attack.  Not gonna lie though, I thought I might have been having a heart attack.  The irony of that for me was that I spent a lot of time this summer trying to get healthy even when I wasn't losing weight.  I was easily gettinig my 30 minutes of physical activity daily around the hospital, I wasn't eating as much meat and I was eating and drinking fruits and veggies like they were going out of style (yes drinking because of juicing).  I stay away from foods with MSG, hormones, antibiotics, artificial preservatives, flavoring, etc., and foods that are GMOs.  In other words, probably 80% (maybe more) of my diet are healthy whole foods.  So the idea that I could have been having a heart attack after changing my lifestyle over the past couple of years and especially over the past few months was incredibly ironic to me at the time.

The fact is though, I am getting closer to thirty, under extreme pressure on a daily basis and overweight.  A heart attack is more and more likely.   It is not unheard of for women to have heart attacks at 30 (which I'm getting closer too).  I am becoming more and more aware that I am aging and I have to continue to grow and respect my body through diet and exercise.  Not to mention my risk for cancer.  My grandmother had cancer, my father had cancer and my son has/had cancer, so what reason to I have to believe that I won't get cancer myself? I have none. 

One of the things that started me changing our diets over the past couple of years was watching what Clayton's body has gone through and my growing respect for both the power and the vulnerability of the human body.  I mean seriously, when is the last time any of you parents watched your child breath in and out and thanked God for the ability for those lungs to breathe in and out again and again.  Really, how many of you have stared at the rise and fall of your child's chest and thought about their lungs as magic?  I have.  I have because I have seen how quickly that one seemingly "expected" bodily function can stop working properly.  Everything we have witnessed with Clayton has given me a deep respect for the human body and what we ask it to endure.  I have grown to understand both how delicate it is to our environment, as well as how receptive it is to healing when possible.  One of the things I started doing over the summer was juicing.  I juice fresh fruits and vegetables everyday.  Even Clayton drinks the juice of about four freshly juiced carrots each day for their powerful antioxidants.  I've also reduced the amount of meat I eat and cut out most grains.  Clayton continues to drink his organic milk and apple juice and we have finally gotten him off of Apple Jacks and onto organic honey O's.  Progress.  I know there are many people who think this stuff is a waste, but my child had cancer and I beleive in this stuff.  I believe it can help his body recover from the past two years and I believe it can act as a preventative when used properly.  I have to thank my friend Annabeth and her angel Abigail for inspiring me to take my family's health further and explore many of these lifestyle changes.  Here's the thing: as crazy as some might things I am about this, I don't want to put Clayton through chemo again.  Once was enough.  It sucked.  It sucked bad and now feels like a bad nightmare.  So if I can do something while the cancer is not growing that could potentially keep it from coming back, then hell yea I'm going to do it.  I will do whatever I can to spare Clayton, George and myself from enduring that hell all over again.  So if that makes me a hippie or a health nut, then I'll be the happiest damn hippie-health nut you ever saw!

Maybe it's because I have spent the past two years surrounded by so many beautiful souls fighting for life.  I have lived in one hospital after another.  I have rested my head on the edge of one hospital bed after another with weary eyes while caring for Clayton post op.  In 2013 alone, I have spent four out of nine months away from home. I have spent time with beautiful children who have died.  I have watched many children vomit uncontrollably just trying to make it down a hallway as they endure the chemo being used to fight their cancer.  I have watched children grit through the pain of spinal surgeries as they have to find the strength to walk again.  I have seen children bouncing around on their new prosthetic limbs like they had just been handed the world.  I have seen so many sweet sweet sweet little beings for whom their lives will end too soon or for whom they have been asked to endure a lifestyle most people could not imagine. And I describe it as though witnessing these things makes me special.  Not what I mean.  It doesn't.  It makes me aware.  More aware than most people, which is why all of these things have changed me and shaped me these past two years.  I live in constant fear Clayton's life will end too soon.  And now I'm starting to fear my own life will end too soon.  I'm tired and trying to keep whatever strands of sanity I can still cling too.  Now that we are past his back surgery and home again, I am turning all of my attention to Clayton, our health and The George Clayton Childhood Cancer Foundation.  So you won't hear a whole lot from me.  I'll still post from time to time and if we have anything big happen I'll certainly keep everyone updated through the blog, but on a regular basis, I'll be more absent.  BUT Clayton and I will be at the store a few days a week and will pop in and out even when we don't spend he day there, if anybody wants to come visit.

As for how Clayton is doing now... Good.  Much more himself.  Moving good, but ready to get the cast off mid October.  

August 19, 2013

Loneliest weekend ever here.  All of our buddies are going home or are in the ICU after surgery.  There were only three of us long timers rolling the halls this weekend.  So glad folks are coming in starting Friday and I won't have to be by myself again!  It has been a full month since Clayton and I had any visitors.  We love each other, but we need a break.  

That aside, we have had some struggles with a couple of Dr. Sucato's staff about Clayton's cancer scans.  Not the good doc himself and not any of the inpatient staff, but a couple of his staff members who a month ago said no scans until after surgery, then last week they changed their tune and said no scans after surgery for a while so they scheduled them for this week, but that posed a respiratory risk with his surgery just a week away.  Then we thought we might be doing just a CT today, but no other scans before surgery.  It was a tough concept, but George and I made peace with that.   Then this morning they weren't ready for the CT, there were issues about contrast and it all turned into a roller coaster of a mess.  So today has been an adventure in trying to sort things out.  As it stands, I think we are actually going to attempt to do all of the tests in one sedation on Wednesday.  Unexpected decision, but the anesthesiologist in charge here said she would be comfortable with it, so here we go...

After writing this I finally got to talk with the good doctor who apologized for the way things were handled and assured me he would have everything taken care of.  He means business, so I know he will.  He is the type of man who calls people's cell phone to get what he wants and because he is the brilliant doc he is, people jump/respond.  There is still one test we won't be doing, but it seems we will be fitting the others in.  Now we just see if everything goes smoothly...

If things go smoothly, and we have good results, hopefully George and I can breath a little easier going into this surgery.

July 24, 2013

Last week really threw me for a whirl.  I have know idea why; I should have expected something to go terribly wrong because that is typical for us.  Now we are left forging on and contemplating what our next move will be for Clayton's wellness.  Even if last week did not cause obvious long term damage, who's to say how many hits a single kidney -that started out in this world functioning one third of what it should have- can undergo before it begins to weaken?  Chemo...hit one.  Hemorrhagic Cystitis leading to hydonephrosis...hit two.  Radiation...hit three.  Last week...hit four.  We have to be so careful with that kidney because if he is going to need a kidney transplant, we would prefer it be when he is much older.  

Anyway, we know that MSKCC does not have any treatment that Clayton is eligible for right now that we are comfortable with.  The only possibility would be the humanized version of 3f8, but we have reason to suspect from other participants that based on his last reaction to 3f8, we would likely have problems with the humanize version as well, and we are not going to put him through at again.  Which leaves us with Michigan and possible alternative treatments.  We would like to try Clayton on a special  diet in hopes of preventing any relapse, but if we did the treatment in Michigan, we would have to follow a different diet.  And we have to make these decisions now, because it would take some time to get the ball rolling with Michigan.  We also have to consider what we would do if he relapses, because if he does, we will need to act quickly, so we need a game plan.  I have always said that if he relapses, we would go straight to MSKCC.  That is still true, if we went with conventional medicine.  However, we have to decide if we would go with conventional medicine or a more natural approach to healing.  We are fortunate his kidney has come so far and we can't continue to poison it without expecting it to retaliate at some point.  Also, if he relapses, the odds are not very good and we have to decide that if it seems his cancer might be resistant to chemo would we put our foot down and go for natural only treatments in hopes of preserving his quality of life at the very least, if not saving his kidney too.  Or would we try an all natural therapy from the get go?  Lots of decisions.  I know some of you probably think I am crazy for not knowing we would go straight to chemo/modern medicine and I know others agree about our contemplating his quality of life- because a few people commented about his quality of life when we were first about to start chemo after his diagnosis.  And I'm sure some of you think why the hec are they worrying about this at all right now.  Well, we are because we need to be prepared.  All of these things are impossible decisions and affect our future in ways we cannot even imagine, which is why I am bogged down by all of it right now.  

You want to make the right decisions for your kids, but when the decisions are this dang big, it's hard to know your making the right decision.  I will say that as crazy as people may think I am, I believe more and more in the power of natural therapies.  I also believe in using modern medicine when it's necessary, but I think a good wholesome organic diet can do wonders.  I know I use to take Advil everyday for headaches, then I started eating mostly organic and stopped getting headaches.  Once I got out here, I was eating cafeteria food and not a mostly organic diet and the headaches came back. I'm not basing my entire belief on that, but that certainly helped confirm my feelings about a good wholesome organic diet.  I know at the end of the day, there will always be a group of people that think  this stuff is crap and doesn't make a difference and I am being foolish and wasting my time.  Perfectly OK with that.  I am not setting out to change anyone's feelings about the way they live, just explaining how Clayton's battle with cancer caused us to examine our lives and think twice about the things we are putting in our bodies and the other ways in which we choose to live.

We're also trying to make decisions about his back surgery.  So I'm just bogged down by my thoughts right now...

July 13, 2013

Clayton and I have had a rough week.  We are at that point where we have been here a month and even though the hospital is still wonderful, it has become the sam ole same most days.  We both just have had bad attitudes this week.  He's been a terd and I've been irritable and a bit of a terd myself.  It's hard with a child that doesn't talk.  I get frustrated because I can't always figure out what he wants or needs and he gets frustrated because I don't always get it.  Then there are days like the last couple of days and he acts out like a typical bored frustrated kid and the fact that he doesn't talk compounds all of the irritation for both of us.  Its hard to tell where the line is between what he understands and what he chooses to ignore.  I think we are coming out of our funk though...

My personal funk has been worse because I have been working through my "losing Clayton" anxieties.  There are four kids out there right now that I know about who have lost their battles to neuroblastoma and are slowly fading away before their families' eyes.  Another recently passed and others I don't know are passing every day and it has all brought my anxieties again rushing to the surface.  Plus we are getting close to our one year scans and aren't currently doing any treatment for the neuroblastoma and the last treatment we tried to do was a bust.  I guess this is what the next few years will be like for us.  Always dreading the worst.  

One of the things that is helping bring me out of my funk is thinking about our health and future plans.  This is also something we are doing to try and keep Clayton healthy on a daily basis.  Cancer forced us to take a closer look at what we are putting into our bodies and especially Clayton's.  I've been very disgusted by what I've learned.  Looking to the future, one of the reasons I am so willing to move out of the city is so that we can one day have our own little homestead for our family.  I want us to be able to grow and raise as many of the things we are putting in our bodies as possible.  For example, there are hormones that are in our typical store bought beef that research as shown has cancer causing carcinogens.  For that reason, those hormones have been banned in most places in the European Union.  They have the science to prove the harm caused by these hormones and chose to use it to protect consumers' health.  Our country as well as Canada have yet to show us that same compassion. Clayton doesn't need any extra cancer-causing anythings so we are trying to protect his health through what he puts in his body as best we can.  Since Clayton's diet consist of a lot of hotdogs, we buy him organic hormone and antibiotic free hotdogs.  As for the beef problem, George is a hunter, so every hunting season we stock our freezer for the year which gets us around that beef problem.  There is more and more grass-fed beef out there though!  Industrialized beef production is a disgusting process and not at all natural.  As well as the industrialized production of chickens and pigs.  It is so simple to walk into the store pick out our food and never give a second thought to what is behind the process to get that food on those shelves.  Don't misunderstand, this has nothing to do with giving up meat, only encouraging the practice of consuming healthy meats from animals raised naturally.  Which brings me to a question for all those that call themselves Christians.  God created the earth, the animals and man; isn't it reasonable to assume that God wants us all to respect the earth, its animals and ourselves?  Just a thought.  I challenge any of you to watch Frankensteer or A River of Waste or similar documentary and then tell me you think God would approve of the practices being used in industrialized meat production.  As Christians, isnt it our duty to care for all of God's creatures.  Yes, animals are going to be raised for slaughter, but should that mean they don't deserve a natural humane existence?  So if we know God would not approve of these practices, then wouldn't his will be to work to change the process of mass meat production?  So as Christians who are suppose to be doing God's will, what are we doing about this?  The crazy thing is that by correcting this HUGE flaw in our system, we would also be making ourselves healthier by removing the added antibiotics and hormones and risk for diseases like e-coli and mad cow disease.  Seems like a win-win to me.

And what does all of this have to do with Clayton?  Well, we don't know the cause of his cancer.  We just know he has a genetic mutation.  What caused that mutation we don't know, but we know he had neuroblastoma growing in his body and we know some of those cells are likely still there.  We don't want those cells to again start dividing causing the cancer to grow.  For that reason, it would be reckless in my opinion if we knowingly fed him products that science has proven harbors carcinogens that encourage cancer growth.  I do not believe that industrialized meat production processes caused my son's cancer, but I do believe that the hormones and antibiotics they use in those processes could encourage any existing cells to again grow.  I would have to be an idiot to put him at that risk more than necessary.  Clayton's main diet is hotdogs, burgers, apple jacks, apple sauce, spaghetti, milk and apple juice.  He drinks Horizon Organic milk, Publix Greenwise Organic Apple Juice, organic applesauce, I use whole wheat pastas or spaghetti squash, organic spaghetti sauce and deer meat and eats organic hotdogs.  I've had no luck switching out the apple jacks, but I feel good about everything else.  And to answer the unspoken question about how much this cost: processing deer meat is less expensive than store bought beef, Publix makes their Greenwise products like his apple juice comparable to all of the "regular" products, milk is just expensive period-thankfully he doesn't drink as much anymore,  it doesn't cost any extra to buy organic spaghetti sauce (obviously price varies by brand- you can get it at Sam's Club though for cheap), the hotdogs are pricey though.  We pay an extra $2 per pack of hotdogs at Publix in order to have organic hotdogs.  But the peace of mind it gives us is priceless since he eats more hotdogs than anything else...except apple jacks.  Thank God companies like Amy's Organic, Publix, Whole Foods, Kashi, Earth's Best and others are making it easier and more affordable for us to eat organic healthy foods.

We have also changed our laundry detergent, dish soap, shampoos, bug spray and some other things.  As for the price point, is just like the food; you have companies like 7th Generation that are making it more affordable to make safer choices.  AND these products work better then "regular" products from our experience.  Two years ago, I thought organic was a waste of money and a fad.  I was uneducated, didn't understand and never would have thought I would feel the way I feel about it now.  Clayton's health forced me into learning about this world and THANK GOD.  I would hate to have gone any longer before making these changes in my life.  Obviously we get stuck in the hospital and have to compromise on certain aspects of living organically, but we do our best.  All of this is another of the good things that has come from Clayton's health issues and especially his cancer.

Maybe all of this sounds CRaZY to some people, but I believe in it and for me is a huge part of my relationship with God.  Church has never been my "thing" and I'm not sure I fit into any specific division of Christianity.  I believe in God and I believe in the values I hold to be true.  Most of my relationship with God has been built on my educating myself on religious history, but I feel like this will be a huge point of growth in my relationship with God.  I never thought about it before learning about organic/natural living, but as I have learned more and the pieces have clicked, it seems so obvious to me: what better way to grow with God than to learn to live in a way that treats all of His creations with the respect they deserve.  It seems that each lesson learned making these life changes is a building block in a person's relationship with God. What better way to learn, live and believe in the power of God than to live in a way that allows you to truly come to appreciate the gifts he has given us and honor Him for what He sacrificed to give them to us.

Not meaning to sound like a religious scholar when I clearly am not.  Nor am I an expert on any of this. I am learning.  And since I have had a critic/small number of critics in the past let put this disclaimer:  this is MY blog, these are MY thoughts and feelings and if you don't like them, no one is forcing you to read.  If you are looking for someone to pick on...bad choice.  My beliefs are not being pushed on anyone, I'm merely giving people something to think about.  And if my previous critic/critics have any thoughts about the financial implication of buying my son organic products, let me say this...bite me!  As for ending a post talking about growing closer to God with "bite me"...well, even Christians get irritated.

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