Tuesday, January 6, 2015

New Direction, New Blog

You know that saying, "The more things change, the more they stay the same?"  Untrue.  At least in some cases.  Your child gets cancer, things change and life is never the same again.  You lose a child, things dramatically change, and are never the same again.  The years have passed since Samuel left us and from the outside looking in, things that have changed a lot might look as if they've stayed the same.  We live in the same house, kids are still schooling at home, we still have the van we used to drive Samuel to the hospital in, and the list of sameness goes on even though everything is NOT the same.   I am beginning to understand why many families who lose a child move.  I understand why they dramatically change their lives in the ever after.  It doesn't change the fact that the child is gone, but it does reflect outwardly that things have changed.   Business is not "as usual." 

We did not move because we are buried in this house.  The housing market crashed just after Samuel left for Heaven and we've been stuck.  We are still stuck.  I don't know if we'll ever be unstuck.  I pray for a miracle in that regard.  And that stuckness seems to have affected us all in one way or another.   It is as if we are all in limbo in certain areas of our lives, waiting for a change that does not come.   I have always been a firm believer that if you cannot change the big things, then change the little things.  Do something new, different, challenging.  Something that takes your mind off the stuckness and/or helps you move through it.  It has taken me awhile to personally find something I could be passionate about enough to pursue but last summer I found it.

I decided to take up quilting.  I love it.  It's new, different and offers its own unique set of challenges for me personally.  I have always been one to keep a record of life in some shape or form.  Wither it be a personal journal or writing more publicly.  So in the spirit of making a small change and doing something new,  different, and challenging, I have created a new blog that revolves around my new passion.  You can find me blogging more regularly here.

I won't be closing this blog down, but as you've noticed, I don't have much passion for posting regularly.  There are a variety of reasons why.  It's not that I have lost my passion for my family and what everyone is up to.  I haven't.  I simply recognize our need for privacy.  That and stuckness isn't all that interesting.

The events of Samuel's life needed to be shared.  I believed all we endured, all he endured, was information that might help people.  And it has.  I also recognized the very real possibility that he might not live a long life so having a "tell all" accounting of his life wasn't something that might become a sore spot in his later years.  So like I said, the more things change, the more they stay the same is incorrect.  I believe the more things change, the less they stay the same.

That's it for now.

Happy New Year!

Sunday, November 30, 2014

Twenty-one: A Tribute to Bud

For those who have asked about how Bud is doing and those who like horsey stories, this post is for you.

Bud is having his best year ever.  Twenty-one is a great age for a horse!  I have never had my own horse live this long though I have taken care of other people's horses who were "elderly" in the past.  Those horses seemed aged to me but Bud still seems like a little kid in a lot of ways.   I am certain there are many factors for this.  One, he has had an easy life.  Low mileage if you will.  Two, good bloodlines make a huge difference and his are very good.  And more than likely the most important factor is ownership.  He's been mine since birth and he will be mine until death.   For his entire life, he has only known kindness.  When I tell people about his temperament, I always tell them he is like a dog - the best dog you ever owned.  He is cute, cuddly, playful, silly, willing, trustworthy, entertaining, always hungry and most importantly, he is full of love.   I then tell people they simply need to understand "Bud Logic" when he has one of his stubborn mule moments which are fewer and farther between these days.    And it's been over a year (world record) since he destroyed something (of his) just because he was bored, or mad, or whatever his Bud Logic was for that event.
Last summer we were able to find Bud a smaller pasture with several other horses where he did not have to wear a grazing muzzle. 
It was a nice change for him after being alone for the past several years.  I enjoyed the fact that he did not have to be muzzled in the hot summer.  Unfortunately, life after laminitis demands grass intake be limited in the growing seasons and while he seems to have accepted this reality, I still feel badly for him wearing the "Hannibal" mask for six months out of the year.  The time spent at this particular property was short mainly due to humans and mud more than horses but I realized that Bud had grown accustomed to living alone and having "friends" was optional.   As he was the odd one in the lot of seven, he wasn't always treated nicely by the other horses and often I'd find him alone - with a new cut or several.  I thought he'd be hanging out with at least one of them after some time had passed but he really never bonded with any of them.  
So I didn't feel bad at all when we pulled up with a trailer to take him to the most perfect home he has ever had.
Bud hasn't been trailered since 2008 when we brought him home from Morton which was about 90 minutes away.  He has been trailered several times in his life.  Once when he was only a few months old with his Mommy.   A couple years later, we had him moved a few miles down the road and I actually rode in the trailer with him.......not one of my finer decisions but he did fine.  He was only two at the time.  That was the first time he was trailered alone so my rationale was that he'd be fine as long as I was there.  And he was but it was a very long couple mile ride in a one horse trailer.  But I digress. 
I always wonder how he'll do.  Will he load?  Will it become a training session?   The last time we loaded him it took some work.  We only needed the rental trailer for a five mile trek this and we had five hours rental time to make it so no problem.  It didn't take more than 20-30 minutes last time to get him in.  
We pulled the trailer up into the yard and find Bud already waiting at the gate.  He seemed ready to get away from his horse frenemies.  Mark opened the trailer and I lead him to it like it was no big deal and said, "So, you are getting into the trailer now."  I got in and he just walked on in like he does this every single day.  I swear I heard him say, "Okay, whatever," as he got in.   It was so cute!  Just makes me grin for days to think of it because he was SO good.  We closed the door and that is when he realized none of his frenemies are coming because they are all going nuts in the field.  Back to my own logic that he'll be fine if I'm with him, I stood on the side of the trailer so he could see me and told him it was all going to be fine.  That helped a little.  As long as he could see me.   So off we go on the five mile trek to the new place and Bud is hollering and I am yelling out my window that he's fine and everything is okay.  After a couple miles he quieted down.  It is always nerve wracking for me to be hauling Bud, my baby, anywhere.  I am sure I drive Mark nuts telling him to drive slow, take the corner slow, etc.   I know some people do this all the time but we don't and it seems totally surreal to be hauling your horse behind your van.  I'm glad we got some pictures of this trip because it was really a standout. 
We arrived at the new place in good shape and of course I was anxious to get Bud out of that thing.  I was hoping he'd get out better than he did in 2008 where he cut himself somehow on the way out.  We opened the stall and he first backed out, put two feet on the ground and then reloaded.  He was still a bit upset.  I managed to turn him around so he could see where he was going thinking things will go better but that was when he took a flying leap out unfortunately sending me flying as well.   Thankfully we both landed on our feet and it seemed we did it without injury until we noticed him holding up his back foot and kicking it repeatedly.  At first we didn't see any reason for it but then we found the blood oozing out from the inner part of his leg.   Appears he kicked himself on the way out.   Mark said it looked like he jumped out of the trailer and stepped on himself trying to avoid landing on me since I hit the ground before he did.  Poor boy.  The good news is, this new place actually has running water which we actually can use so getting the wound clean and dressed was quickly done.   And this is yet another thing to remark upon.  It's been about 15 years since we had access to a hose and how well I remember those days - Bud was NOT impressed at all. Yet,   how easily I was able to tend to Bud's wounds because even though it hurt, he knew I am taking care of him.   Mark was concerned he might kick at me because he was hurt and because the water was cold but he never did.  It appeared he thought it felt good.
Bud has been at the new place for a month now and has settled in well.  He is alone again, at least horse wise though there are some horses he watches and calls to one pasture over.  After seeing him with horses for a few months, I think he is fine with this arrangement.   He does have three goat friends to graze with and a friendly dog to visit with at the fence line so he technically is not alone at all.  And then there is the landowner.  She used to have horses but no longer does and is thrilled to have a horse back on the land again.  In short, she loves Bud, spoils Bud, which is music to my ears.  It's been ages since we've boarded him at a place where the owners really seemed to like the animals more than the money we paid to keep them there.   I have never had Bud at a place where on the day I moved him in, the owner sent me a text telling me that he was doing fine with this picture attached.
I already felt great about the decision to move but that solidified it.  And it has been nothing but bliss ever since.  The place is wonderful.  Very little mud.  Two huge shelters.  3.5 acres which I can actually ride on which seems weird and wonderful after spending 6 years at a place where the owners were adamant I NOT ride on the property.  There is running water, power, a real hay barn and a real tack room none of which Bud can destroy because he cannot get near them.    These seem like givens but in this day and age, they haven't been.  So having them again seems surreal as well.
Some may remember how I found Bud's first home here in 2008.  I dialed a wrong number thinking I was dialing for one boarding place and it ended up being another.  What are the odds of that?  Only God could make that happen obviously.  Well, this one wasn't based on a wrong number but it did come from a lot of prayer for a decent place.   Years to be exact.   Bud is obviously getting older.  He needed a real shelter, not a tent.  We also wanted a field that did not flood for 8 months of the year.  Boarding from a decent human being was also high on the list as well as affordability.  There were other things too but those were the biggies.   So when this place popped up, I almost didn't call on it because it is not just down the street like the most recent two, but instead in the next town and that is the only thing that isn't perfect since I cannot drive.  But aside from that, if I were to have my own place, it would be set up much like this one.
Bud gets to wake up every day to Mt. Rainer peeking at him.  How lovely is that?
And he can watch the people in the gym (large building on the right) work out if he's bored.  And they get the pleasure of watching him eat and poop.  Yeah!
Currently, he can go ice-skating if he wants....
Mark can just jump on for the heck of it...in our own field!  Dare to dream!
And here Bud is doing what he does best.  Being curious.  He needed a new blanket because it is very windy up here and he's checking it out hoping it's food.  Sorry Bud.
What do you think?  Cute?
Definitely a cute butt!
And a cute face with applesauce dripping from the lips!
There are some interesting places to ride here apart from the field.  Mainly back roads, as you see, town is just around the corner, but we are on the country side of it.   In 2008, I would have not been as interested in this place simply because the riding areas, aka trails, are miles away and you must travel roads to get there.  These days, no problem.  Since I could never ride in the field, Bud was taken from green to golden on roads and pedestrian trails.   He has seen it all and is good to go.  Roads?  No problem. 
I took him out for the first time a week ago wondering how he'd feel about the new roads and places and things he's never seen.   Here's what happened...we had the most wonderful time.  No issues whatsoever.  And even that seems surreal.   Even my "bombproof" first horse would be weird for the first few rides at a new place.  But Bud, he was ready to get out of his field and go exploring.  Something somewhere finally clicked and he realized that me on his back equals satisfying his curiosity bump.   He does not get barn sour.  He is opposite.  He does not want to return to his field until he's had enough outside adventure.  He's been like this for a few years now so it's not just the new place.  It's pretty funny that he wants to explore everyone elses driveway except his own.  But once he grows tired, then it's fine to go home.
I've come home so many times this month and asked Mark, "When did he get so good?"  Mark laughs and says he's always good.  But the thing is, he wasn't always riding good.   Ground good, yes.  He's had years of ground work put on him before I ever met Mark and ever had kids.  Years.   And it's interesting to think of Bud in the time frame of decades but in truth, he is only remaining animal from the days when I lived with my parents, was not married, not even thinking about marriage, and had no kids - except Bud.  Mark put this another way.  He likes to tell people that I had Bud before I had him.   There's some Mark humor for you!  Bud was about 18 months old when I met Mark and one day as he watched me working with Bud he said, "I can tell you'll be a good mom."  I laughed because I wasn't planning to have kids.
Well a few years later I became a mother to a human and Bud's training went to the back burner for about 12 years.  He was green broke very early in life and other than a few free days here and there, I didn't do a lot with him because mothering children came first and there just wasn't time or babysitters.  And of course Samuel changed everything and that is how Bud eventually moved to Morton.  Way too far away but at least with a person we trusted.   And then Samuel went to Heaven and Bud came home.   The next year was spent healing his broken hoofs.  That was horrible.  A couple years of some very annoying rides!  I remember thinking that it was supposed to be relaxing and it was simply frustrating instead.  He was balky, scared, and barn sour.  Not a good combination.  And I knew I did not have the patience for it.  So I let him sit for a long time riding sporadically here and there but nothing much.  Each ride was better but still had bits of frustration.  Mainly because all of the training had to be on the road.  And then in 2010 he got laminitis which is pretty much a death sentence for most horses.  If it's not, it usually limits their use significantly.  And their lifespan as well.   And that was horrible!  I still have nightmares that he cannot walk.   But as I ask Mark when he got so good, I already know the answer.  It was when he got laminitis. 
I believe Bud has always known I was his owner even when he was away from me for so long.  He still came when we called even after years of not seeing him.  But I think the special bond we had so early in life was - not broken - but significantly lessened during that time.  And even after we brought him home, it wasn't just there  again overnight.  It took that horrible laminitis to really bring back the trust and love we had in the early years.  There was a marked change in Bud, not just as a riding horse, but as a complete horse overall as he healed from that.   And I began to notice it immediately as we started getting back out and about together.  Rides got better and better.  Time spent seemed more like old times and less like strange times.   For awhile I'd tell you Bud would go with me anywhere......on foot.  But these days I think Bud would take me anywhere on his back too.   That is a whole different level of trust.  A whole different level of love too.  
There are a lot of horses that anybody can ride.  My first horse was that way though it took a solid two years of training to get her there.  And much of that training revolved around me having a whip and not being afraid to use it more than love and trust.   She was an eight-year-old green broke broodmare who was very herd bound when I got her.  She was not interested in being a teenager's riding horse by any stretch.   She did become an excellent riding horse and I loved her very much.  She was also very trustworthy.  I cannot be sure if this love and trust ran both ways.  I am sure it was there, but not to the degree I have it with Bud.  
My relationship with Bud was built on love and trust from day one of his life.  Looking back, there were many turning point moments with him.  Similar to the laminitis turning point.  Certain things would be awful and then one day, the awful was over and it never came back.  This wasn't the result of having a whip and not being afraid to use it.  It was the result of patient perseverance on my part as well as loving training.  This is why I stopped riding him soon after he came home; I knew I lacked the patience to do it right so I went back to the basics of good ground work and excellent care.  I did not want another horse I had to beat into submission.  I wanted a horse who enjoyed being ridden as much as I enjoy riding.  I wanted a partnership, not a dictatorship.  And that is what I now have.  Strangely not from riding hours a day for two years straight but instead from being consistent in love and care on the ground. 
With all that said, Bud is not the kind of horse anyone can ride.  Case in point here.
Bud was not pleased to have Mark on his back.   We found this picture hilarious because it captured the moment so well.   Bud planted his feet, laid back his ears and just looked overall annoyed.  Mark can ride him, Bud will carry him around, but it is with this very same look and reluctance that he does it.   It's simply because they have never bonded and Bud is the kind of horse who needs that and that is perfectly fine.  There are tons of movies made about horses who bond with only one person that depict very well the very special bond between them.   Bonding with a rider makes a horse a better mount.  Mark needs his own horse....and hopefully some day that will happen.  In Bud's lifetime would be even better.
 While I've owned Bud his whole life, I have waited a long time to have the horse he's become.  And I think it's pretty special to have such a wonderful bond with a large animal.  It's pretty special when a horse would injure himself before injuring me most especially when he is upset and not thinking right.  He still thought about me.   It's pretty special to have been able to ride him all over the roads of his new place for the very first time with a bridle that was basically a halter with two reins attached.  Now that's trust
So, it's wonderful to finally get Bud to a nice home.  A place he has settled into nicely and seems to really like a lot.  I love that the owner loves him and treats him with a very special kindness.  I don't know why she no longer has horses but I sense that she regrets the decision.   I told her that I might sound braggy when I say that she could not have a nicer horse than Bud but I have been around quite a few horses and none of them even come close.  She told me today that she believes this too.  Bud is a very special guy.  I hope and pray I have at least another decade to enjoy him.  Horses, like people, are not replaceable.  And if I didn't say it already, Bud is doing GREAT!

Wednesday, November 26, 2014


I hate when I dream Samuel died again.  It's bad enough it happened at all.  But to occasionally dream about it happening all over again - it's really not necessary.  This particular dream was oerwhelming because I touched him.  I felt him.  I held him.  He was alive.  I looked in his eyes.  I saw him move.  I saw his body full of life again.  And then I left him, in my bed, just for a minute and when I came back to him, he was lifeless.  Dead.  Again. 

I couldn't believe it.  I didn't see it coming.  Usually in dreams, he does eventually die.   Rarely, I wake before he dies.  As in real life, I am generally there to the bitter end refusing to give up a second of being with him because  I know death is inevitable.   Even in my dreams, I am somehow prepared for it.  But this time, I guess I forgot. and It was a stab in the heart.  I walked out of the room leaving him alive and he died in the few seconds I was gone.   Insult to injury.

I immediately held him.  I caressed his body.  Begging life back into it.  But there was nothing to come back.   No amount of denial, touch or prayer would bring him back.  I did not want to accept it.  Not while his body was still in my presence.  In my bed.   I kept leaving the room and coming back to hold him oddly enough thinking it was a bad dream and if I left and came back, all would be right.  But it wasn't.  I lifted him up to a sitting position and his head rolled around.  I thought I saw his eyes flutter.  I thought I heard a sound come from his mouth.  I thought I felt breath.  I hugged his body, still warm and pliable, and willed it to breathe, to hug me back, to come back to me.   But I got nothing.  Just my imagination thinking I saw this and thinking I felt that.   I began to sob uncontrollably, something I have never once done since Samuel left.  I did not "keep it together" for my family.  I lost it and I didn't care who saw it.  I was completely unwilling to have Samuel's body moved from my bed, taken away by the funeral home man as it once was.  I did not want him taken away from me again.  I was convinced that my touch would somehow revive him.   I did all the things in the dream the part of me that was screaming from being ripped apart wanted to do on the day he really died.   Delayed reaction I suppose that needed to be lived out....for all the good it did.

I then woke up.

It's hard to not wake up feeling the pain of it all, all over again.  Walking around the house thinking the same old thoughts I thought I was done thinking and feeling.  He's gone, all over again.  He was just with me.  I was just with him.  I touched him.  I held him!  And now he's dead all over again.  I shake my head, as if that will shake the pain away.  But I feel it as if it never really left me.  Apparently I just got good at ignoring it.   That is my first impression as the sadness grips my soul, I must just be good at ignoring it. 

I don't want it to hang around.  I want it to leave.  I have felt this horror more than enough.   Experience with it reminds me that it won't hang around long.  The only reason it is SO raw is that I literally touched Samuel.  I held him.  I rocked him.  I FELT his body, warm and living.  I saw his beautiful eyes open and his face smiling.  If I didn't know better, I'd swear I was JUST with him.   And that is why it feels as if the wounds have all been sliced open and I am walking around bleeding out. 

Quite simply, this is the pain of separation.  It is the pain a mother feels when she cannot ever again on earth, physically touch, hug, kiss and love her child.  And that child will never again on earth, do the same.  This is the pain I've learned to somehow by some miracle ignore.  That precious loving touch.  That feeling of bliss we both shared whenever we were together.   Everything could be wrong but we were always alright as long as we were together.    I miss that more than words could ever express.  I miss Samuel, my best friend. 

So many times in his life, I was reminded that it would most likely be short.  I wanted to believe anything but, but I still lived savoring every moment just in case.  Drawing nearer and nearer to that precious child.  Being his everything and in so doing, he was everything to me too.  Mark often wondered aloud whether I'd survive and be "okay" if Samuel died.  He understood our most precious love for each other was something that words fail me to adequately explain the length, width, and depth of.  He was never jealous of it.  He respected it.  But he worried for me after Samuel left us, for quite a long time.  The knowing that he was finally healed, finally truly fine, better than fine, made it so I could go on without totally losing my sanity. 

Everyone on earth has or will eventually lose a loved one, but how many of those fought as hard as I did to save that loved one's life?   This sentiment allows me to live without regret but at the same time, the depth of the sorrow of life without Samuel is still massive and I know this is why.

I often - often - more than I ever care to admit, wish Samuel was with me. Healed, of course, I will always qualify that statement with "healed."  There have been many times recently, even in the last few days, where I have been sewing and felt a strange breeze come across my face and I wonder, was it him.  Did he hear me, feel me, longing for his presence.  I have felt that breeze and immediately turned around to see who was behind me only to find no one and no explanation for the wind.   He used to wander into my sewing room often to watch.   He'd stand right beside me impatiently waiting for me to sew something for him.   I am currently sewing a special gift for Daniel for Christmas and have spent quite a lot of time wondering what Samuel would think of it.  It is something I wish I could have made for Samuel too and in a way, I have, but he will never receive it here.  So I sew and I wonder what he'd think.    And then a breeze will just blow in from nowhere and I wonder..... 

I try to focus on the positive.  I actually touched him.  I got to love him in person again.  And it's been awhile since this happened in a dream.   When it does, it is always bittersweet.  Wonderful while he is alive and horrible after he dies.  But I have to believe, it's better than nothing.  6.5 years is a long time and God knows how much longer it will be until we can forever be together.

Life cycles on.  The trees are dancing while the leaves are dying, blowing away in the wind.   Such is life.

Friday, September 5, 2014


Samuel's site remains up for anyone who is searching for a different approach to cancer and feeding tube help despite it being over six years since he went to Heaven.   The information and memoir of Samuel's lifetime is significant enough for me to continue paying for the site to remain available to the public.   Samuel's diet page alone has helped countless people nourish their children and even adults with feeding tubes better than they ever thought possible.  Quality of life has improved significantly for so many people that naturopath's whom I have never met or spoke with are sending people to Samuel's diet pages and using them as a reference for getting people off conventional formula.   This is always good news for me to hear and I enjoy helping people in this respect.  It is amazing how many of the foods and diet tricks I used for Samuel work SO MUCH BETTER for people with a digestive tract that hasn't been destroyed by chemotherapy.  What used to take me days to see improvement with, people with healthy guts see improvement with in just hours.  This information simply reinforces my thought that if Samuel's gut had not been destroyed in that first month of chemo, he'd still be with us today.  This information also helps me understand even more than I did way back when, that his gut was destroyed beyond anything we were ever told and there was no coming back from it.   Keeping him alive as long as he was - was nothing short of a miracle.  The more time passes, the more people I work with, the more I am in awe of what we were allowed by God to do.  Samuel suffered greatly but lived long enough for me to learn enough about the gut to be able to spare others many issues.  When I was a teenager planning my future "career," I never thought it'd be what it is.  And note here that I do not get paid for any of this nor do I ever ask for compensation.   Countless people helped us freely, gave of their time and their money to support us through the most difficult years of our lives and I am thrilled to be able to pay it forward and see such wonderful results.  I simply ask that people respect my time, my heart and most importantly, Samuel.  Understand that this information came at a great cost emotionally, physically, mentally and yes, financially.  In the end, I feel Samuel gave his life to help innumerous people.  He paid the ultimate price.

Over the last many years, a much smaller portion of the people who contact me personally are searching for an alternative to poisonous treatments.  Unfortunately, a good majority of these are people whose children have already underwent extensive chemo, radiation and even transplant to no avail.  Some being given months to live contact me in utter desperation.   My heart goes out to them having been in a position where everything has eventually failed and one must face the reality that their child will die.  A lot of times it isn't the parents contacting me, it is the next of kin because the parents are buried in grief.  It is exceedingly difficult to explain to people that alternative treatments are not just something you can do at the drop of a hat.   There must be planning, research, courage, partnership with spouses, support people and the oncology team, and most importantly 24/7 commitment.  One simply cannot start juicing green foods and expect that to accomplish anything.   In short, many are contacting me looking for that magic bullet, quick and easy solution, and there isn't one.  The majority of these people have never taken the time to read any portion of Samuel's journal, simply skipped to the chemo pages and therefore have no real idea of the time, effort, ups and downs, pain and tears that go into this process.   Granted, most of these people simply do not have the time currently to do so, but that is my main point here.   The time to look at alternative choices isn't when your child has been given weeks to months to live.  It is well before that.  Why?   Because as I stated above, it takes planning, research, courage, partnership, and a 24/7 commitment. 

When we removed Samuel from chemo entirely, I had 18 months to plan out what I'd do if he relapsed.   When the worst came to pass, I was not left grasping at straws.  I had a solid plan.  I had done the research and was continually doing research as time passed.  I had more than enough courage to follow it though and one might think courage isn't one of the most important factors here but it is.  The whole system will be against you.  They will scoff at your plan and they will minimize your successes.  If you don't have a thick skin, you will cave under the pressure.  I had partnership, as best as it could be, with the Oncology team, great partnership with my husband, and with the untold numbers of people supporting us.  I was already committed to Samuel 24/7 because of all the issues the MD's saddled us with so that wasn't anything new.  It was just one more thing to contend with in a very large pile of issues.  But for the people contacting me, all of this is new.  It is a total 180 degree shift from allowing the MD"s to direct care - to THEM directing care.  They would have to be willing to now shoulder the majority of the burden of their child's care and treatment.  The bottom line is, they are not ready to do that.  Again, because of the afore mentioned reasons.  When I go into these things, the overwhelm factor is over the top. 

What happens when a child relapses with ALL?  The first time, a choice is given as to move to a high-risk chemo protocol possibly with radiation, OR go to transplant.  If a parent chooses the HR protocol and the child relapses again, transplant is the next option.  If a child relapses after transplant, depending on the physical health of the child, they might be a candidate for another transplant.  But if not, the choices are to go home and die OR enter them into a clinical trial for some new experimental drug.   What you should glean from this info is that the MD's have a Plan B, a Plan C, and possible D, E, and F depending on how long your child can survive these plans.  After Plan C, whatever your child endures in conventional or experimental medicine is purely academic.  Your child becomes a human guinea pig.  Are you okay with that?  Many rationalize this in their minds because it "might" work and it "might" help another child one day.  After all, it is for the advancement of science.....  The fact is, there hasn't been advancement in ALL treatment in decades.  Samuel's protocol was written in 1967.   The "proven" protocols of today consist of the very same drugs used starting in the 1960's.  The only differences is they are used in higher doses leading to higher toxicities and more long term consequences.  Compare this to Samuel.  At relapse, his WBC was 50k of which 40% were blasts and we were able to get that into remission with NO chemo at all.  It took two months, but we didi it.  So, it is possible.  It is.  But YOU have to do all the legwork.  Blood, sweat and tears.  And obviously, even that is no guarantee.  But think for a moment.  What if, instead of scoffing, our Oncologist actually wanted to know what we had specifically done to achieve the "impossible?"  What if he wanted to truly "advance" science?  Might things be different today?  A rhetorical question, I know.  Another is, do researchers REALLY want to cure cancer?  My answer is no.  The cancer industry is rich and getting richer because of the desperation of parents to see their children live, no matter the cost.  And again, this began prior to 1960 in earnest.  Prior to that, there was no "chemo."  It was unthinkable.   Samuel's GI once asked me why our story was never covered on the news channels.   "Remission without chemo."   Well, because food is not FDA approved and if food was the real cure, a lot of people would be out of a job.   That is the sad fact of the matter. 

I have watched this process for over ten years now and found that children who relapse after transplant generally don't live long no matter what is tried.  Transplant is a drastic and torturous approach to cancer and yes, some children do survive it, but with numerous long-term consequences.  I know of one who relapsed during Samuel's lifetime, was transplanted, and five years later, developed brain cancer and subsequently died.  When they tell you that chemo and radiation can cause secondary and often worse cancers, they are NOT lying.   The question needs to be asked...what horror are you saving them up for in the future as a result of today's "lifesaving" treatments.  Is there a different option?

My father told me early on to save Samuel's life and worry about the side effects later.   For me, this thought process was NOT okay.   NOT okay to cure the cancer and destroy his mind and body in the process.  What kind of life were we saving him for?  Was it a life "I'd" want to live?  No, it was not.  Following the Golden Rule here, would I want all of this done to MY body?  No.  I am often asked, "What would you do if this were your child?"  And I tell people these things as plainly as I write them here.  The horrors that Samuel endured in the first three months of treatment I find children who are put into every last ditch protocol experience some form of in their last three months of life.  They often die very tortured deaths and the parents not only have the grief of loss to contend with but also the guilt of the consequences of the treatments they chose as well.  Then I follow it up with, "This is the parents' decision to make, not mine, not the grandparents or next of kin or whomever I am speaking with.   Ultimately it is the parents who will live and die with the decisions they make for their child."  

Make no mistake, these are gut-wrenching decisions.  My strong opinions are based on my experience which from start to finish wasn't ideal, "normal", or anything I'd wish upon anyone else to experience.  The bottom line is, if you are thinking of doing something different than conventional treatments for cancer when opportunity arises, which in the US, is generally after a relapse or two because of CPS, you need to do your homework before the time it smacks you in the face.  If you are an adult, you have more freedom of choice for cancer treatment but at any rate, if and when it happens, your Oncologist will have a plan and if you don't have a plan, you will be in troubled waters.   The time to begin shouldering the burden of care is well before a relapse or even a cancer diagnosis occurs so that you are educated and ready to act.

I want to end this post be directing you to the spiritual side of this.  If you are a Christian, your life as well as the lives of your friends, family and children are NOT your own.  You were bought and paid for with a price.  Jesus gave his life so that those who believe in Him could reside with Him in peace and health and divine love for eternity.  So I ask you, if you truly believe this, is physical death REALLY the worst thing to happen?  I ask because when your child is facing death and eventually does die, this belief will be tested immensely.  It certainly was for me.   What was once a belief is now a gut-knowing for me.  Samuel is free and healed and more alive there than he ever was here.  For that, I am eternally grateful.  Do I ever wish he was still here?  Yes, but not in the physical condition in which he lived.  I'm glad he is in Heaven because his life was hellish here at times.  I cannot wait to be with him again but until such time, I am to live according to God's will, His choices for my life, and not my own will.   This is not the life "I" planned for myself.  That in itself is a hard lesson to learn but one I have learned.  Work with God no matter what He's put on your plate.  Resistance is futile.  The plate just gets bigger the harder you fight Him. 

In this life, there is much heartache, trial, and tribulation.  We were never promised a rose garden here and anyone who tells you different hasn't read their Bible and is serving a false jesus.  If you belong to the One True God, suffering is a part of life but is not in vain.  There is a purpose to it and Samuel's legacy is proof of that.  

Samuel belonged to God.  God loaned him to me for six years and seventeen days and I am grateful for that opportunity beyond what any earthly words can express.  The hardest lesson of Samuel's life for me to learn was that Samuel was never mine.   Yes, I was his mother and during the time he lived, the Lord trusted me enough to take care of him.   Ultimately, he belonged to God and came here long enough to fulfill God's will for his life.  Was that will to suffer immensely and die?  Was that all there was to Samuel's life?   Only a person without spiritual eyes would answer yes here.  Everytime a child or adult's quality of life is improved by what I learned from taking care of Samuel, I am reminded that God's will for Samuel's life was to help others with all that was learned.  That alone barely scratches the surface of the treasures I have gleaned both on a very intimate level as well as the spiritual lessons I've been able to share with others because of Samuel.  

The ripples of God's will for Samuel's life continue to bathe not just my life but the lives of many.  Yes, we are still sad that Samuel is not with us.  Yes, the grief still grabs us when we least expect it.   But, no, suffering and dying from cancer  is NOT what Samuel's life amounted to.  Nor is that the case for any other child who has been stolen from any person via cancer or any other means.  There are many Godly purposes to be gleaned from these lives - it simply takes time for us to grieve the loss completely, a willingness to trust in God's goodness in all things so we may see the purpose in it, and an additional willingness to personally finish the work that He started in that child's life.  People often ask me how I can work with them, dredging up all these memories and griefs of Samuel's life.  They say if it were then, they'd never have the heart for it.  It is hard for them to understand what I've just written.  I have grieved thoroughly.  I have trusted that God had a bigger and better purpose for all this than what human eyes could see and was willing to have Him reveal it to me in spite of my loss..  Finally, I have been willing to take over where Samuel left off.  Yes, it is hard sometimes.  But as I've said for a very long time now, I can do hard things.  God provides the strength and I (mostly :) do as He asks.  I am continually blessed and comforted in all of it.

May the Lord comfort and strengthen you,

Thursday, May 8, 2014

From the Shadowland

Ecclesiastes 7:1
 A good name is better than a good ointment,
And the day of one’s death is better than the day of one’s birth.

Samuel has been home with his Father in Heaven for six years.  To God be the Glory.  Amen.

Tuesday, September 3, 2013

Summer Recap

It's amazing how fast summer passes here.  Mainly because we rarely have a summer that is filled with tons of warm days.  But this summer was that rare one where the warm days have gone on and on allowing for enough outdoor activity that once the rains return, it is a nice change.  A welcome change.   My garden is thrilled anyway. 
Kaysha and Anna began their summer on stage.
The dancing princesses worked hard during the year and gave spectacular performances.  We were very proud of them.  Kaysha had performed in a dance class on this very stage when she was five years old.  Funny how time flies.   This year they are moving away from being the dancing princesses in order to become karate queens.  They are both loving that!
We found much time for kayaking this summer as well.
And then there was swimming and camping too.
And of course, hiking.
Outdoor cooking with home grown veggies.
We made some new friends.
I got some new transpo.
Okay, when Mark rides my bike around the neighborhood with "Blubber" on the back, half the neighborhood comes outside to watch.  Blubber, aka Diego, aka Tubby, (he's really fat now) is one of the not-so baby anymore, babies, from the litter we had nearly three years back.  He is the go anywhere, do anything dog.  He hikes 5-6 miles with us like it's nothing.  He camps happily.  He goes out in the kayak like he was born to.  And he loves the motorcycle as well.  I don't think there's anything he doesn't like.  He even likes baths!  He ended up weighing 20 pounds and that is 20 pounds of pure love and joy. 
Daniel went on the trip of a lifetime, or at least of his lifetime thus far, to California and hit three of the big amusement parks there.  A family who lives nearby took him along on this huge trip.  They refer to him as "the son they never had" even though they have two of their own sons.  Yeah, they love him dearly.  He seems to have been born into good fortune because opportunities seem to always come his way.  Via skype, he has friends seemingly worldwide these days and is quite congenial.  I do believe it is his good nature and trustworthiness that attract such good fortune and I am glad for that.   He has a kind heart and always has.  And for a nearly 15 year old who already stands 6'2" and wears his dad's clothing, he needs to be a gentle giant.  
My kids start school tomorrow while the rest of the neighborhood started today. The house seems quiet compared to usual given that it has become the hang-out spot for a pluther of the kids around here from morning til night.  I am enjoying the silence to be honest.   I like that so many kids enjoy being here but I also like it when my home is more "mine" than theirs too.
Kaysha will be a junior and Daniel will be a freshman this year.  Both are schooling entirely online.  Kaysha has been for the last several years but this is Daniel's first year without me as primary teacher.  I'm sure there'll be an adjustment period.   Anna will be in fourth grade, still homeschooled by me.  I am looking forward to working solely with her.  Of the three, she is the strongest in academics, has the most patience with learning and enough perseverance to excel.    Kaysha has a lot of artistic talent whether drawing, dancing, writing, or acting.  She excels.   Daniel has a more mechanical bent and good computer literacy as well.   He is still quite the comedian so if you need a good laugh, you know who to call.   It's such a treat to watch them grow and change and mature.
It has been just over 5 years since Samuel went to Heaven and not a day passes that he is not mentioned here at home.  As we guide our teenagers into adulthood helping them to determine their place in this world and what kind of a footprint they want to leave on it, it would be easy to feel cheated because we do not have that same opportunity with Samuel.   In a physical aspect, we do feel cheated.  How could we not?  But in a spiritual and eternal aspect, we don't.   His life has made an impact on this world.   There has hardly been a week that has passed since he went to Heaven that I don't get a note from someone who has been inspired by what we were able to accomplish during his lifetime.   Someone looking for answers.  Someone looking for help.   
The most heavily visited page on his web site is the page on feeding real food through a g-tube.  And as time passes, I am clearly seeing that this is the footprint he has left behind; the one that many people have chosen to follow.  People who wanted what we wanted.  To give themselves or a loved one a better quality of life using nutrition as primary medicine.  Whether the ailment is major or minor, life threatening or simply life complicating, people are finding Samuel's site and being encouraged to try and not only try, but succeed.   Most of them are not cancer related at all.  But when they see how much good solid nutrition extended not only the quantity of Samuel's days but also his quality of life given all his medical issues, they are more than encouraged that nutrition can be a basis for healing.  
That is not to say that I don't still hear from families with children fighting cancer who are trying to buck the system.  I do.  But they are few and far between because it is SO hard to get out from under the pediatric cancer cult and of course fewer still who see poison as bad "medicine."  Those who do manage to break away, hope as we hoped, that maybe their child will be one to survive against the odds.  Maybe their child will be the one that makes conventional therapies finally come into serious question.   I wish I could tell you I know of one who bucked the system and cured their cancer without chemo.  But to date, there hasn't been one.   Not yet.  With the total lack of support in the pediatric system, I am not surprised.  It is a rough row in a swamp full of alligators.  What I have seen is quality of life being honored and sometimes fought for if need be.  I see people who have been told by their Oncs that their child will relapse and die within a few months of stopping chemo having that child live happily for years before dealing with relapse simply through nutrition and alternative cancer treatments.  I am also seeing kids live with active leukemia that is controlled enough by alternatives and nutrition that they don't require blood products, antibiotics or hospital stays to manage it.   In short, they are not "blasting off" as one of our Oncs used to call it.   That is HUGE!  
What will eventually be known worldwide about all of this progress, I don't know given that anyone who controls their own child's cancer effectively without conventional medicine is referred to as a "fluke" by their own doctors.  I imagine this minimizing must help ease their guilty consciences.  And when unconventional methods fail, they generally cannot wait to say they told us so.  But of course, they fail to acknowledge that their precious chemo eventually fails as well only with significantly more physical and emotional consequences.   Funny how they never want to "go there." 
What I do know is how I feel in my heart.  I tell these families who venture into the shaky ground that we walked on that at the end of Samuel's life and for all the years that have passed, I have had no regrets about choosing the path I did.   I know that chemo would have both shortened his lifespan and tortured him to his death.  That was something I wasn't going to be a part of as long as the choice was mine to make and thankfully, that choice, once mine, was never reascended.   God help the person who dared to try.  Mark and I were always on the same page about things and never did one thing we weren't agreed on.  This is too hard a path to travel if you are not in agreement and given the divorce statistics of marriages after a child has died, this cannot be overlooked.  The rest is up to God and it helps if they believe in God to begin with.  Samuel's legacy was never about cancer and never will be.  Cancer doesn't reign supreme where he lives.   It was about love, perseverance and building faith in God.  It was about people helping and caring about complete strangers and doing what their hearts told them to do..   From beginning to end.  In good times and in horror.   Those were the best of times and the worst of times but times nonetheless that I would never have chosen to miss.  Samuel has left a huge footprint on a lot of lives and continues to do so and as I look back, I cannot help but be proud of being a part of that.
Onward and upward ever faithful to the call til we meet Him in the sky.

Hope this post finds you all well.

Sunday, April 14, 2013

What Happened to the Babies?????

Suddenly, two of them look pretty grown up and one looks a lot like Samuel.
Kaysha, age 16

Daniel, age 14

Anna, age 9
We're still kicking around.  Everyone is well.  Still seems odd to post pictures without Samuel.  Some things never change and this is one thing that I doubt will.  He would be eleven next weekend.  We try to imagine that.   Cannot really.  When Mark saw him in the dream he had just shy of a year after he went to Heaven, he thought he looked more like 12 than nearly 7.  That is the image he saves in his heart. 
Samuel is ever always around.  We still "notice" him and for that I am grateful.
I miss having "the babies," when there were four of them.  But I am enjoying the freedom that has come with their becoming young adults.   They are gentle children overall.   Kaysha is learning who she is as a young adult, making and taking great strides as such.   She continues to be very artistic and in more ways than one.  Daniel is a gentle giant, dramatic to the point that you cannot stop laughing sometimes and then he hams it up more.   He calls me "Mommy," even in front of his friends and I love it.   Anna is still a cross of Samuel and Delma but adds her own flavors into the mix.  She is very cheerful, helpful and mature for her tender age of 9.
Mark is still working at the University and that is going well.  We took up kayaking in addition to our hiking and camping adventures and are absolutely loving it.  I am still doing what I've done for years now.  Loving my family, schooling, sewing, you know, the usual.  
Bud turned 20 this year and is doing the best we've seen since bringing him home in 2008.  He acts like a 5 year old with the digestive tract of a 20 year old, that's all.  I know how to keep him safe from his overeating issues.
The dogs, all five of them, are the best!   It's good to have a "large" family of humans and critters.
We live a quiet life raising gentle, kind children and we enjoy that immensely. 
Hope you are all well.