November 14, 2014

Faults, Stars and Vaccines

I gave in and watched The Fault In Our Stars.  I knew this movie dealt with so much so close to home, so I was hesitant to watch it and hadn't dared to read the book because everyone knows books are always better than movies.  In this case better book, meant more I didn't read it.  I was surprised that watching this movie wasn't just a sappy experience, but a comforting one as well.  They did a wonderful job with the movie; which of course always goes back to the author that told the beautiful story in the first place.  The way Hazel is free of disease and yet still fighting for her life almost eerily parallels Clayton's life.  Being cancer free is suppose to be happy and joyous and so on and so on.  I think even George and I anticipated breathing a little easier and relaxing a bit more once Clayton was NED.  Surprisingly to us, that has not been the case.  Quite the opposite.  The things that have scared me the most have all happened after Clayton's initial treatment.  More often than not, I don't think people consider the aftermath of cancer.  Not the patients, not the families and not everyone else.  The fact is not everyone gets to be cancer free and move on with their lives.  Some people, like Hazel and Clayton and many of his friends still have life and death battles to fight.  Like Hazel, Clayton regularly has to deal with respiratory issues.  There is a scene in the movie where Hazel wakes up having issues and her parents run in and they frantically get her to the hospital.  That is my life.  I have lived that scene too many times to count...It never gets easier.  It makes you scared all the time.  Night times are the worst.  Which means date nights (if they exist) are rushed, nights away are non existent and nights at home are often spent in close observation.  It does feel a bit like Clayton is a grenade in the same way Hazel described herself as a grenade.  Every respiratory issue, fever or rash could be the beginning of the end.  Clearly this kind of paranoia is no way to live, but what do you do when you have to deal with these issues and your only real defense is 2 puffs 2 times daily?  I think as a parent it means your always a little broken.
Anyhow everyone should watch that movie it is wonderful and I think they did an excellent job on portraying not just life with cancer, but life after cancer.  They captured not only a variety of childhood cancers in the movie, but also a small glimpse of how many different ways in which various cancers and their treatments can affect kids.  There are endless complications to cancer and its treatment that I don't think folks realize or think about.  As for that particular middle of the night scene I mentioned before.  Spot on.  Not over dramatized at all.  I've lived it and it felt pretty real to me.

What has made EVERYTHING so much more challenging for us is that Clayton is a non verbal child.  That means we cannot rely on him to tell us where something hurts or even when it hurts.  Complicating this further is the fact that we know he has a huge tolerance for pain.  So the only way for us to truly know what is going on with him is to monitor him closely.  Pay attention to his breathing patterns and inputs and outputs, etc.  What's normal whats not?  All of this is why I gave up any opportunity of having a career.  I might have hobbies that make me money from time to time, but I will never have a career.  Clayton requires too much.  It's hard giving up your future in that way;  in some ways its like giving up your independence.  It sucks.  Especially given that we have come to live in a world that often seems glorifies the career woman and treats the stay at home mom as though she is inadequate. That has definitely been one of the more difficult decisions George and I have had to make.  It was a tough pill to swallow.  But we are content knowing we made all the right choices for our child and now, George and I both have our responsibilities and we try and make the best of it all.  The number one way we can ensure Clayton's health is that he have consistent care and that his caretakers be able to know what's normal and what's not throughout his days.  I know that I have at least one family member that was incredibly disappointed in my decision to resign from my job.  A job that I enjoyed and was enormously fortunate to have.  Unfortunately, I found myself in a position where I had to choose.  I chose my family.  I hope that person can understand.  Truth be told I haven't spoken to them very much since then.  They were disappointed in me and I was disappointed in them for not being able to see me and see that I had made the right choice.  Because having to make that decision sucked, but I have no regrets because I chose my child.  Anyhow, I hope that person knows I love them and while they might see my life as lacking or sub par or inadequate or a giant failure, I see it as an enormous success.  God has granted me a life that allows me to see beauty some people go a lifetime without appreciating.  That makes me enormously successful as a human, as a woman and as a mother.  My life is difficult and often causes breakdowns, but it is also wonderful and I love it.  I would not change it for anything.  My life with Clayton had been the best thing in the history of best things.

As for the difficult side of my life...we are making a strong effort to try and relax a little about Clayton's respiratory.  In part because we have to stop being so scared all the time and in part because our recent check up with a local pulmonologist indicated that in spite of the respiratory episodes Clayton has had, he does seem to have healthy lung tissue.  Though he does have restricted lung disease.  As the doctor put it, he will never run a marathon or be swimmer.  And by relax about his respiratory, I just mean that we are trying not to let every cough freak us out as it has for years and such.  We are trying to be better about treating him like a kid with normal health issues (while still being conscious of his underlaying issues).
One of the largest problems with his lungs is the curvature of his back.  His back is further aftermath of his cancer.  We were actively pursuing correction to his back and even had a surgery scheduled when he was diagnosed with his cancer.  Because of his cancer we had to postpone corrections to his back for two years during which time his back got at least 40 degrees worse.  That's a HUGE deal.  So the way his back is now would not have been, had it not been for the cancer.  The traction, the massive surgery, the limited correction...It is the cancer's fault.  I blamed myself for a long time.  Sometimes I still do.  But it wasn't my fault.  There was nothing more I could have done.  I was trying.  It is the cancers fault it got to where it did.  We had to put off correction to treat the cancer and that has scarred my sweet baby in so many ways.  If for nothing else, for that alone I hate the cancer.  So yes, I am sure family has been waiting for this though they have wisely not prodded in reference to the subject...Clayton's back surgery from last summer was not everything we had hoped for.  On a scale from 1 to 10, I would say it was less than a 5.  Visually, I don't know if I can tell we even did surgery.  I can feel a difference though.  I can now feel his vertebrate now, where before there was too much rotation.  So I do know it did something, I have neglected to ask the doctors for the measurement of his current curve because I don't want to hear a number I will be disappointed with.  I have two eyes and they tell me what I need to know.  I will say that for the past year though his curve has looked worse than what it is because of a "fluid pocket" over the hardware they implanted.  It will go away in time as he grows.  But yes, we were hoping for more from the surgery.  We had high hopes for what the surgery could do for Clayton and the outcome made our hearts break for him.  There was too much working against him.  The complexity and size of his curve along with his age all played a role.  Had he not been so young with so much growing left to do, they could have given him significantly more correction with what my ortho moms call the final fusion.  Instead they only fused a portion of his spine so that the rest can continue to grow (and possible curve).  We will no doubt have a final fusion one day...maybe 10 years or so.  So yes, we were disappointed with the surgery and the factors all working against Clayton, but that is not to say we were disappointed with the doctors or the hospital.  We love and respect both the hospital and the doctors and whole heartedly believe we took him to the right place and will continue to do any further surgeries there as well.  Team Sucato all the way!
Anyway,  we know we are too cautious about certain things with Clayton and we are working on that, but we also notice that folks often don't understand why we are as cautious as we are.  For example, why don't we have a bike for Clayton?  First of all, the child isn't known for his ability to balance.  Secondly, a portion of his back protrudes from the rest and if he were to fall on his back somehow, the most delicate and valuable part would also be the most exposed and vulnerable.  Not worth the risk and the docs would think we were lunatics risking their hard work like that.  And every parent's favorite answer...Because we said no.  IF he were ever to get a bike, we would pick it out and he would only ever use it under our supervision.  In short, ride on toys with Clayton that require any balance what so ever are not a good idea.  Period.  Our kid, Our rules.
Why are we so weird about folks being sick around him?  Well simply put, bad things happen when he gets sick.  It sucks when any kid gets sick, but there is a whole other world to think about when you have a child with underlaying conditions. It is true what you see in the news: folks with underlaying conditions do get sicker and see complications.  When Clayton gets sick he has issues with respiratory or extreme fevers and we are sick and tired of ending up in the ER.  So even though he is not immunosuppressed any longer he continues to have other complications.  Plus if he pops a fever we have to test his port which is a can of worms in and of itself.  In short, we choose to avoid sick folks if we can help it.  Because at the end of the day it is George and I who have to sit by his side if he ends up going to the hospital...that entitles us to be over zealous about the whole thing.
And what's our deal with vaccinations?  For those wondering if my hippie/homesteading idealologies have extended to the medical treatment of my child.  Yes and no.  I believe in medical intervention when it is necessary...clearly folks seeing as how I did consent to giving him chemo and radiation among other things.  I also believe in strengthening the body and its immune system through diet and nutrition.  I believe that the greatest medicine on this earth is the plants that God provided us with.  I take to heart the saying, "Instead of paying the doctor to make us better, we should be paying the farmer to keep us healthy".  Though, these days that saying should specify the "organic/natural farmer".  That's a whole other post.  When it comes to Clayton's health we try not to do anything unnecessary.  The story goes like this...Clayton had all his vaccines prior to his cancer diagnosis.  Once his treatment began we stopped all vaccinations per doctors' orders.  After his treatment, we never addressed the vaccinations until we were asked about it recently by his pediatricians office.  George and I had been thinking about it for quite some time and had spoken with other cancer parents on the subject.  We decided the right decision for us was not to continue them anymore.  Now, a decent portion of the world would like me to think this is abominable and makes me some horrific parent.  Not so people.  For Clayton's unpredictable, vulnerable and mistreated little body we decided the vaccines he had had thus far were sufficient and we did not want to introduce anything unpredictable like additional vaccinations/boosters if it wasn't absolutely necessary.  When we made this decision, we had no idea it would mean we would be told our pediatrician could no longer treat Clayton.  Apparently it did.  I showed up at the doctors with Clayton only to be told they could no longer treat him...after everything he has been through to get dumped by his pediatrician was a slap in the face.  Especially as it happened.  George and I were both quite disappointed that the doctor did not even talk to us himself.  I have no idea why he didn't, I just know he didn't.  I also don't know the politics involved, but there must be some because it seems it is a monumental task to find a pediatrician that will treat a child without all of their vaccinations.  In fact I did not find one in Baldwin County.  Now it seems a bit like overkill to dismiss a patient or refuse to treat a patient that has not had a complete set of vaccinations under these circumstances.  Keeping in mind, my child is not in public school and is rarely ever around other children period.  I understand the debate if your children go to public school.  In that case, parents do need to consider the best interests of all the children not just their own, because we all know how public schools pass around germs.  But that is not Clayton...not even close.  My mind really was blown.  Not just my own though, our ER doctor was a little flabbergasted when we had to explain to him why we were in between pediatricians at the moment a couple months back.  He said he did not understand the difficulty we were having given that Clayton had had the most important vaccinations and had his medical history.  He even commented if he were in that line of medical practice, he would treat him as a patient.
It was hard for us though, because we have worked hard to find doctors we love for Clayton and we loved this pediatricians office.  We liked him, the nurses, the staff, the facility.  It is hard to be kicked out of that without feeling like you got a real explanation as to the why.  " That's our policy" is not an explanation.  But it happened and we chose to stick to our guns and our beliefs and we found a doctor that would treat Clayton.  It won't be the same environment which I hate.  But whats done is done.  Private practice doctors are free to make their choices and I will maintain my freedom to make my choices and not be bullied into a corner I'm not comfortable with by any doctor ever!  We have been bullied in the past about flu shots by some other doctors.  Not cool.
Vaccinations are a tricky issue.  Everybody has an opinion and everyone thinks their opinion is right.  Here's my thing...Vaccines are not black and white.  It is a difficult decision for any parent and it is a personal one.  Think about the side effects list they give you people.  Parents should always take into account if their child spends much time around other children.  There is no blanket answer to this issue, but for Clayton the answer was not to continue them further.  I also choose not to give him the flu shot which is also a topic of debate for some docs.  That said, if ebola started spreading here, I would more than likely give him an ebola vaccination if available.  All this goes to my point that medical care should be custom based on a patients needs and specific circumstances and to employ policies that treat every child as though they are the same and live the same lives is ridiculous.  There is no one size fits all with medicine.  It was both sad and comforting to figure out this was a problem not limited to our old pediatrician's office, but to the majority of those in our area..  I think the whole dang thing is crazy.  I feel like it is the systems way of trying to make my choices for me...NOT GONNA HAPPEN...I prefer to sink into my homestead granola lifestyle rather than live a life where every decision is made for me due to politics, policies and technology.
We have the ability in today's world to DO so much, to BE so much...but we seem to do more harm than good.  And so much of it starts by society, government, etc. attempting to restrict our ability to choose for ourselves and by exhibiting such disrespect towards individuals who choose to make their own individual lifestyle choices.  It's quite sad.  Those feelings don't all stem from the vaccine issue;  it stems from all kinds of things going on today. Maybe more on that later...