December 31, 2014

No Holidays For The Sick

Clearly Clayton's body has zero care for the fact that it is the holiday season.  If the only hospital visits we ever had were the ones for his renal, cancer or ortho, life would be so much easier.  Those things take so much away from us and him, but when you throw in viral infections or falls or whatever into the mix it is just too much.  ALL of these many hospital hours we tend to log are why it is so important for us to have good medical care.  It makes all the difference!
George has been sick and try as we might to avoid it, Clayton got sick too.  Which as it does nearly every time he gets sick, meant ER visits for us.  Yay! :(. This is why we stick to our bubble so to speak...to avoid midnight hospital visits.  Here's how the past 24 went...
I knew since the wee hours of Tuesday morning that Clayton was getting sick.  He had a slight croup sound to his cough while sleeping.  Watched him close all day, knowing what was likely coming.  Ate and drank fine and acted fine.  Little coughing, lite runny nose.  Went to bed last night still listening...sure enough it started.  So we gave him steroid around 12:30am, did inhalers; nothing seemed to change.  So around 1:30am we headed to Thomas.  Thankfully, because Clayton is well, as Clayton is, the triage nurse let us wait in a second triage room instead of in the main waiting area.  So awesome!  However, we waited...and waited.  During which time he got a fever of 102.7.  But as we waited for three and a half hours to get a room, his symptoms all began dissipating.  So literally when they finally came to take us to a room it almost seemed pointless to be there.  We decided to forgo seeing the doctor and go home.  We were tired and his emergent symptoms had dissipated and we weren't fond of the idea of another 4 to 6 hours in the ER.  Especially when we were already SO tired and Clayton was SO irritated because the hospital internet is worthless and won't play his videos.  We knew going home meant we would likely find ourselves in Pensacola today...and we did.  But we have been so impressed by them that it was a relief more than an inconvenience to have to go to another hospital.
Back to Clayton...During the hour before he woke he began to breathe a little noisier again and upon waking his cough sounded a bit like residual croup.  I tried to bring him to his new Peds office, but they had no appointments today and were closed tomorrow, so here we sit in the Pediatric ER at Sacred Heart.  Because here's the thing...we still felt like Clayton should see a doc for respiratory reasons with his history, but we would have likely had to come to the ER no matter what for them to do blood cultures  on his port since he had a fever.  Fever with port = mandatory blood cultures.  Also, fever with ureter stent = needed urine specimen.  All to be sure none of these foreign objects are causing infections.  Basically once the fever happened we were destined to be in the ER.  Again I have to say how much I adore their pediatric ER.  We had a room within 15 minutes of being here spoke to someone within another 10 minutes, had a plan, got stuff done and the only reason we are still here as I write this is because we need his CBC and BMP blood results before we head home.  They take an hour to come back.  
Such a pleasant experience though; especially since this is my first ER visit without George or my mom.  Well, me and the kiddo flew solo in NYC ERs a couple times, but that's different.  I always have Clayton's essentials ready to go, but it helped a lot today having time to pack extra juice and food and such.  We both threw on our pjs and hit the road.  No point in dressing up to sit in a hospital.
Anyway, we are waiting to head home, shouldn't be much longer.  I did just find out he tested positive for the flu.  And based on the CDCs reports on the effectiveness of the flu vaccine this year, no it does not change my mind about giving it to Clayton at all.  If I had it to do again, I still wouldn't give it to him.  Shoot even if I had, we would likely still be in the same spot we are in today.  I'll come back in another posts about my vaccine findings and what my preferences will be, but for now I can still say I am not a fan of the flu vaccine.  In previous years, the flu vaccine did not agree with him and so I think it best to abstain from that particular vaccine due to his history with it.

December 26, 2014

Christmas!

We got to have a mostly peaceful Christmas at home!  Clayton really got into Christmas this year.  The whole Santa and Christmas morning thing clicked with him.  Only problem was he wanted to unwrap EVERYONE's presents for them...with them, without them...made no difference to him.

I think Clayton had a nice modest Christmas.  We try to keep to our minimalist concept as best we can, and at the very least, we try and keep to small items.  But he doesn't care and still gets little goodies and is good to go.



That's not a new ipad.  Same 'ole ipad new cover.  He honestly loved all of his gifts.  Especially Planes Fire and Rescue that Santa dropped in his stocking!  I feel like our TV could play the movie by memory now.  Of all of his toys from us, Santa and family, the only one he hasn't paid much attention to is Sully.  Which I was surprised by.  But he goes through phases and Sully will see his day soon.

I'm vey excited about his only "big" gift.  A playground!  So technically the swing set was a Christmas gift the year he was diagnosed with cancer and he got his table and chairs a few years back to from his Aunt.  But this year, my parents went in with George and I to make him an area in the backyard that is his.  No dog poo or cat poo or chicken poo... You get the point.  He always likes to lay on the ground with his toys and grass can make him rashly plus the animals all poo everywhere and we were constantly on high alert for animal crap.  Now he will have a clean, soft (impact absorbing) area to play to his hearts content!  So happy for him.  Better picture when it stops raining.  It's railroad ties and pea gravel for those wondering.



Especially because with germs we often avoid public parks, so now we are giving him his own haven in his own backyard and it's his for the playing whenever.  That's kind of our thing...creating a haven for our family.  Life with Clayton lots of times keeps us secluded and I think that translates into the importance of creating a home that truly has all you need for those times when it's all you have.  We have been incredibly lucky.  My parents allowing us to build on their property has given us a place that provides in so many ways.  My mother's house is nearby which serves as an amusement park in its own right to Clayton and let's him get out of the house here and there; George can scratch his hunting bug on those days he needs to be nearby by strolling the property or stalking animals in the back clearing; our neighbors (who were like my second parents growing up) have a pond where George can fish or train with Macy;  I have our little budding homestead for myself; and now Clayton essentially has an outdoor playroom to laugh and play in to his heart's content.  Even when it seems like everything gets flubbed up all the time, sometimes the "big" things just work themselves out as though they were meant to be all along.

As for his head and the subdural hematoma, the neuro surgeon said it should be fine now that we are past the first 48 hours, symptoms could persist for a few weeks, but he does not feel anything more serious will occur at this point.

December 23, 2014

Home For The Holidays

Good news!  The neuro surgeon reports that while it is a subdural hematoma, it is a small one.  We stayed overnight for observation and the neuro surgeon has no problem sending us home today provided Clayton continues to act himself.  He felt the first 48 hours were the most important for monitoring purposes.  He also said we did the right thing monitoring Clayton as we did the night following the fall and bringing him in when he began vomitting the next morning.  So hopefully home today!
In other good news, we were thrilled to learn that Clayton's creatinine has dropped slightly over the past week.  What this means is that Clayton's dietary changes and the blood pressure medication are buying us time just as the nephrologist had hoped it would.  His kidney is by no means fixed nor can these changes ever "fix" his kidney.  But his kidney did react to these changes and therefore it seems we have a bit more time to get our ducks in a row.  We are talking about time such as doing a nephrostomy tube in maybe a month verses a week.  So the end goal has not changed.  The kidney is still not going to last us as long as I once hoped, but we have just a little more time if his kidney continues to respond in this way.  However, his kidney could stop responding and trend in the other direction once again at any time.  It's all just wait and see...still.  Check back with docs on this in a week.
Let everyone know if and when we get home today!

With love,
Clayton, Sven and Olaf

December 22, 2014

Ri-donk-ulous

The randomness that is our life is astounding.  I can't believe the crap that happens to us.  I mean really.
So yesterday my niece and nephews, Clayton and myself were at my mothers.  I walked back to my house and 10 or 15 minutes later got a call they were bringing Clayton down, he fell and wasn't acting right.  Clayton and my nephew were on the bottom 3 steps at my moms playing individually.  Clayton got excited (as he often does) and grabbed my nephew and they lost their balance falling down the bottom 3 steps.  Clayton actually landed on my nephew, but somehow managed to hit his head on my nephew's chest hard enough that he was showing symptoms of a concussion.  We monitored him last night, but he seemed to narrowly avoid the red flags that would have sent us to the ER.  This morning we headed to Nemours for our weekly visit with his nephrologist. And Clayton began getting nauseas on the way over.  Again as we got out of the car for our appointment he began vomiting.  So we loaded back up and drove to the pediatric ER on the other side.
In an hours time, he was hooked to fluids, had his port accessed, had a CT and X-ray done, labs drawn and the doctor was in to tell us their findings.  Love their efficiency and pure awesomeness!
The conclusion is that he has a subdural hematoma.  They are admitting him overnight and doing another CT tomorrow.  The neurosurgeon said he does not think surgery is needed.  Be back later with more...

You see what I mean though?  How do these freak things keep happening to us! The whole thing is quite unbelievable.


December 18, 2014

Be Positive...Get It?! :)

The thing about waiting and wondering...it sucks.  On the one hand since all this news came about, I have been trying to prepare for the days when Clayton and I won't be home.  On the other hand, I have also found myself trying to go about my days as though nothing will change.  Trying to forget about it if you will.  I hate having to do either one.  
Generally speaking Clayton has been good this week.  The blood pressure medication is already helping withs his BPs and he's adapting fairly well to his diet changes.  He goes in and out of spurts of energy and those of rest.  It is hard for us to tell though if it is related to kidney issues or his back or what.  Last week he seemed to have swelling in his face in the evenings and since making our changes this week, I have not noticed the swelling and he also seems to be peeing better during the day.  Both are good signs that the changes are hopefully buying us that time through the holidays.  We see docs and do labs again on Monday.  Bring on the prayers!

Thank you to all of those who have already volunteered their lovely kidneys to Clayton!  I am not yet sure when I will learn more about how all of that will work.  There are so many things yet to figure out.  I can say this though for all you eager donors.  Clayton's blood type is B+ so any donor would have to be a compatible blood type.  I am pretty sure I am a match.  The only problem is that I have had kidney stones and my father has a history of renal cancer, so I am not sure if they would consider me an acceptable donor.  There are lots of stipulations to being an acceptable donor.  Weight, blood pressures, history of diabetes, history of cancer, history of kidney stones and even a history of psychological issues can all lead to a donor being turned down.  So all of this will be quite the process.  Step one will be to see if I would be an acceptable donor.  In which case if I am, who's taking care of me and Clayton post op?  Should be interesting.

P.S. my last post was not me dropping a hint about wanting a mani pedi.  I do NOT want one for multiple reasons...Mom.  I was only making a point.  

December 16, 2014

The Elephant On My Chest

Days like yesterday leave me feeling like someone or something...maybe an elephant...is standing on my chest.  Aside from being emotionally spent, I literally just feel this huge weight.  It's all a horrible cycle.  Clearly I'm not afraid to go above and beyond for Clayton.  Been there, done that.  But at some point I get hopeful that there will just be peace.  And then we find out his kidney it progressively moving in the direction of end stage renal failure.  This was our number one concern since he was in utero.  BUT then he got cancer, his scoliosis got worse, he began having respiratory concerns, etc. and we thought maybe that kidney will keep kicking.  It was doing so well.  And had made it through so much. After all, weren't all those challenges enough?  Couldn't he get a "get out of jail free" pass in the kidney department.  
Of course not.  That would be too easy...and well, easy just wouldn't be our style.
Then after confirming and clarifying things yesterday with the doctors, I am of course thinking of Clayton, but I start thinking of me too.  I lost my social life long ago...about the time Clayton was born.  I've lost touch with my girlfriends from grade school and college.  I rarely ever do anything for me.  No manny-pedis or movie nights or music concerts or football games or casino visits or whatever else folks do for fun these days.  Even gave up my chance of having a career.  And all of that was ok.  I adapted.  I'm a chameleon like that.  I changed to better suit my life with Clayton.  Even building ourselves a small house in the country, getting some chickens and building a dream of being a homesteader.  And I LOVE it.  Every. Single. Bit of it.  It is a life that without Clayton I likely would not have.  Clayton leading me down this path is the biggest blessing...next to him of course.  I LOVE my life and wouldn't trade it.  I relish in the joys of living simply.  I adore learning and practicing lost skills that so many of our grandparents practiced and so many of my generation and our parents have brushed to the side.  I love feeding my chickens every morning, checking for fresh eggs, watching my chickens (hilarious), watching the pup and the rooster play ( oh yes...even more hilarious), planning my gardens, canning, making my own homemade peanut butter or almond butter or bone broths, finding new ways to cook whole foods, learning to process our own meat, learning to make the most of the land we live on, respecting the land we live on...all of it.  It is my life.  I love it.  I am beyond blessed to have it.  I wouldn't have it any other way.  I am truly learning to embrace what is important and disregard what really doesn't matter.  Why this spill about how I love my simple life?
Because when learning what is coming, I think about Clayton yes...But then I think about me.  I think about again being ripped away from this life I have built and being once again displaced in another city, our family again split up and ripped away from my lovely little life I love so much.  
And then I feel like a jackass for being so selfish to think about myself that way.  And then I justify it to myself saying better to think selfishly than act selfishly.  And then I just feel like a jackass again for trying to justify my selfishness to myself at all.  And it just becomes this anxiety ridden cycle of feeling devastated, selfish, guilty.
For some reason I just feel like we've been through enough to the point that there should be an end to it all and yet there never is.  It just keeps going and going.  And I'm not talking about little things like doctor visits, labs or even trips to dallas.  I'm talking about big things.  It was major kidney stuff when he was born and for his whole first year and a half.  Then cancer right after his 3rd birthday.  Then a massive orthopedic undertaking right before his 5th birthday and now right after his 6th birthday we are back to major kidney stuff.  And of course there are the autism challenges and respiratory issues amidst all of the above.  This all takes a toll on us as a family, but there is also a huge toll it takes on each of us as individuals.  It does take a lot of effort to be a family when there is so much time to grow apart being strewn out with hundreds of miles between us for extended periods of time, but I think there is also a question of the effort it takes to stay sane when you constantly feel like you are losing yourself to having to fight another health battle.  We keep trying to move forward together and individually and we keep getting set back.  It's like George going back to school to finish his four year degree.  He just got started this fall and now this.  But we are going to press on and try like hec not to let this deter his end goal.  It's hard though.  When there is constantly something working against you trying to hold things together or find progress amidst the chaos, keeping your sanity even partially intact seems nearly impossible.  And I've said before it can be hard watching others move forward in their lives when you feel like your just stuck all the time.  It feels like crap, if we didn't have our challenges we could be doing those things to.  But we do, so we can't.
I try like mad to think of the wonderful blessings we have.  Like our house.  That is a HUGE accomplishment.  George is just over 30 and me just under 30 and we have already built our own house ourselves.  That is massive.  And having had the timing work out so perfectly that we had the opportunity to build it between our ortho problems and our kidney problems is such a blessing.  We also got Clayton a puppy in July.  Without siblings and much socialization, he desperately needed a companion.  And the timing between getting in the house and our kidney problems again worked out to be such a blessing having given us time to have her go through her puppy months with me and Clayton around all the time and get her house trained before she is left alone with George all the time while Clayton and I are away.  So we have gotten to move forward is some ways and I just keep trying to think of those and stay positive.  And appreciative.
This non-stop fight-for-your life roller coaster we seem to be on often just leaves us feeling like everything is closing in.  Like we can't do anything right and are constantly failing.  Like we are very alone.  Like we are selfish as individuals for thinking of ourselves and our wants when Clayton's life is all that matters.  Like there is no end. No peace.  And we can't really do anything about it.  Elephant on my chest or pains because my heart hurts...doesn't really matter.  We have to keep waking up every day, putting on our big kid underpants and saying (with varying levels of confidence) "We got this".


Always looking for the light through the darkness...


December 15, 2014

Stage 3 Kidney Disease and Counting...

So I met with two of our doctors today and did labs.  Clayton's creatinine has again risen just slightly.  However, given that it has risen even ever so slightly in a week, the doctors are concerned.  Right now we are buying time.  We are trying to make it through the holiday without a nephrostomy tube.  Though a nephrostomy tube will not be an answer, it will allow us to see what Clayton's kidney is doing without the chaos of the messed up ureter.  This will give us a true reading of his kidney function.  Right now the ureter could be skewing things just slightly due to inadequate drainage; which is a problem we have been trying to work with doctors on.  The doctors did say definitively though that they did not believe the progression in kidney disease we are seeing is due to that.  They believe it is the kidney.  Clayton is also hypertensive. So I have to monitor and record his blood pressure daily and report to doctors and he is now starting medication to address this.  The problem with blood pressure is that it is a byproduct of deteriorating kidney disease and yet it can also cause a kidney to deteriorate more quickly.  Lots of balancing.
Let me think... To much information swirling...we will check in again on Monday with nephrologist and urologist.  They hope nothing will happen before then, but said it is always a possibility and told me just to come right in if I notice any changes before then.  It is 99% certain Clayton will be getting a nephrostomy tube in the next month, it is just a matter of when.  Could be next week or could be after Christmas.
The doctors are trying to work things out with the doctors in Orlando they want to get them prepared for Clayton and I am waiting to hear more on that.  They ruled out the possibility of dialysis for Clayton for multiple reasons.  Which means if Clayton's kidney fails we will be looking to a kidney transplant.  They talked about getting Clayton established with the hospital so that they can get him put on a list for kidney transplant.  They said they can, "get him on a list for transplant consideration", in about a month.  Research shows what they must have meant was a preemptive transplant knowing he would not be a candidate for dialysis once he reaches end stage renal disease. So depending on when he could find a match, he could have a transplant in the next 6 months...or less.  After speaking with the doctors today, I expect we'll be making a trip to Orlando in the next 3 weeks.
It's a lot.  George and I had thought we might have a few more years before any of this.  

So here are the facts:
- He is currently in stage 3 kidney disease and still progressing.  Kidney Failure occurs in stage 5.
- Kidney function can be measured by numbers; normal function would be in the 90s, Kidney Failure is in the 30s and Clayton is at 58 and falling...per our nephrologist.
- He will definitely get a nephrostomy tube in the next month.  Not sure just when.
-  he will soon be going on a list for transplant consideration per the doctors today.

I have to say though, today was a good day with doctors.  I was able to sit with both doctors and pow wow.  The beauty of being such a serious patient is you get their undivided attention.
That's all I have for now.  Tired from thinking about it all.
One request:  please for the love of all things do not be one of those people that hugs me with the expectation we are going to hug it out and cry and such.  Don't get me wrong, I'm good with hugs, but my tears are mine and I have zero desire to share them with my mom or my friends or grandmas or anybody else.  I tend to work things out when I'm by myself and I hope everyone can understand that.  I'm good with hugs, I don't mind casually answering questions about everything now, but no heart to hearts.  I'm a weirdo and that's just how I roll.
Despite my weirdness, please know I don't mind a normal hug, I love hearing everyone's sweet thoughts and prayers and I am constantly touched knowing how many people keep my sweet boy in their hearts.  So don't think I'm brushing folks off...not.at.all.  We want y'all and need y'all around us, I just want to be left alone when I'm having a bad moment or a bad day.  It's me...not you :)

I'll be back when I know more or can better process my thoughts...

December 12, 2014

Changes Are A Coming

Clayton's kidney disease is progressing.  For years his kidney disease has been stable except during those times of chaos during stent procedures or chemotherapy aftermath.  That poor kidney has made it through so much.  And despite what we knew to be true in the early months of Clayton's life, George and I had hoped that kidney would last him a lifetime.  Unfortunately, his creatinine is beginning to rise and his BUN and potassium levels are elevated.  His blood draws from right before Thanksgiving alerted us that something was off and then a routine ultrasound followed by another set of labs confirmed this.  We have a number of doctors to meet with about this and more labs to do.  
We have NO details right now about the future.  We have no idea how quickly his kidney disease could continue to progress.  Some people's progresses over months and others over years.  Clayton has a lot working against him.  All we know is this...
We will be trying to have any major surgeries done at Nemours Children's hospital in Orlando.  We love Nemours in Pensacola and would like to keep it in the "family".  It is easy for doctors within Nemours to communicate and organize Clayton's care.  Major surgeries that could result in complications leading to dialysis or transplant cannot be done in Pensacola.  Yes, there will be a major surgery in his future.  We don't know just when, but in light of recent events possibly sooner rather than later.  When I say sooner the best estimate I can give is possibly within six months.  Could be weeks or months.  I don't know. I know the doctor in Pensacola hopes to do weekly labs and get us through the holidays, but we have no idea what Clayton's body will do.  I am monitoring his blood pressure and other stats from home to help alert me to any abrupt changes.  And we are watching his diet.  Yes, his diet.  Diet can be a big deal in helping not to aggravate kidney disease.  No more bananas (because of potassium).  We know that his kidney function took a bad turn between his labs at the end of September and those at the end of November.  The good news is that his creatinine stayed stable between November 24 and December 10th.  We have no idea where things will go from here...Just watching and waiting.

On a positive note, we have been immensely blessed with our urologists in this area.  First, Dr. Terry (he was retiring slowly so we switched) and now Dr. Wehry.  Both of these doctors personally call me on he phone and talk to me.  I remember being in labor and Dr. Terry coming to the delivery room to check on me.  He was at the hospital waiting on Clayton. Love.  The man even gave me his cell number and missed part of a vacation one year to help Clayton when he had his hemorrhagic cystitis.  And the past two nights Dr. Weary has personally called me on the phone to discuss Clayton.  Not a nurse, he himself called.  Which he has done on other occasions as well.  These men are just the best kind of doctors there are.  

That's all I know for now, I will update as I know more.  

To our family:  This is your update.  I know many of you might not like it, and I'm sorry.  Kind of.  I don't want to talk about this beyond what I put on here.  I know y'all will have lots of questions and I have tried to make it clear on here I have no answers to anything right now.  Please respect my right not to talk about this.  I am very aware that this might be hard for y'all to understand or upsetting for y'all.  This is incredibly difficult for me and my way of dealing with it is to not have to explain things over and over or stress again and again that I just don't know about things.  I don't want to speculate what the future may bring with anyone.  I am giving people what I know here and I hope that can be enough.  It is all I have to give.  We love y'all.

Bottom line: Clayton's kidney disease is getting worse.  There is hospital time in mine and Clayton's future and probably a few trips to Orlando (consults, surgeries, etc.).  Clayton had a little break and his life is once again going to get complicated.

Please pray this ridiculously sweet boy can have a peaceful Christmas at home!






December 10, 2014

Ultrasounds and Labs Oh My

So Tuesday we went to the doctors for an ultrasound of his kidney and for labs.  I paid $208.65 for the ultrasound and later paid $45 for his inhaler.  To which I say Obama and insurance you both suck!  Seriously.  Your both lousy!  The sad part is we are suppose to have good insurance.  Aaaarrrrgggghhhh!
However, I will end this with the ridiculous cuteness that is my child...

Still having trouble with videos...soon






December 2, 2014

"Those Days"

Today is one of those days.  Those days where every time you turn around you can't help, but be like "seriously?"  "Is this for real?"  Knowing that YES, this is for real.  Life with Clayton really is this are-you-kidding-make-me-jump-through-hoops kinda life.
It all started with teeth.  As previously explained we knew Clayton had a couple teeth that needed fixing, so yesterday we went to see a local dentist I grew up with.  She confirmed what I suspected and referred us to Dr. Trey who has all the bells and whistles for fun and function as everyone in the area knows.  Dr. Trey's is like a local funhouse.  I dropped Clayton at my mom's after to run an errand during which point he was proudly still toting his green "Dr. Trey's" balloon which instantly made my mom squeall with delight that Clayton got to go to Dr. Trey's.  You would have thought I took him to Disney.  Really though the man (Dr. Trey) is a genius.  Who wouldn't want to run a successful pediatric dental practice in downtown that everyone thinks is fun, fun, fun AND you get to drive to work on a golf cart...with your dogs...who just chill behind the office while you work.  Genius I tell you.  I digress...
This morning we made it to see Dr. Trey who is great, but unfortunately who let me know that he felt Clayton needed to have his dental work done under general anesthesia...again, unfortunately, Dr. Trey had given up his OR privileges so he needed to refer us to a dentist in Pensacola.  Which is fine, but since we went into Dr. Trey's thinking he was superman and realizing he wasn't quite equipped for Clayton's level of difficulty, it was one of those "forgive the look of shock on my face" moments.  So we left.  And yes it was an awesome place and I couldn't help, but wish it would have worked out.  Even Clayton acted like a kid in a candy store there.
On the way out of town, I call the dentist we were referred to in Pensacola during which time I learn that if we were to do any treatment there we would have to shell out all money up front and our insurance could reimburse us later.  A.  we don't have that kind of money B. I am not sure how long it would take to get our money back C. how much money would we really get back?  What kind of money am I talking about?  3-4 cavities/extractions worth plus general anesthesia.  Not going to work.
The last resort I could think of was Dallas.  Clayton's orthopedic hospital has an in house dental clinic.  Same one we visited about a year ago...you know when he didn't have any cavities.  And I know that the insurance, money, sedation side of things is all OK.  No questions asked.  Love.  Luckily, we are in need of seeing his orthopedic surgeon in the next 3-4 months which would make a trip worthwhile, so one phone call and a few hours later everything was coordinated and we were able to schedule things for January.  Ortho...check. Dental...work check.  Two birds, one stone.  The hard way might work out after all.
So who drives 10 hours for their kid to get dental work?  Apparently we do because that is how life with Clayton seems to go.  Everything the hard way.  And while I continue to be astonished at how difficult life with Clayton can be, I try not to complain about it because bottom line is I am insanely blessed to call the little tornado mine.   Plus who can complain about dentist problems when there are real problems out there like cancer?

December 1, 2014

Decay by Chemo

So I can't say for certain that the chemo is to blame for Clayton's current dental problems, but I wonder.  I know it does cause problems for lots of kiddos.  I think we will be pretty lucky to just get away with a few teeth being pulled.  We'll know soon enough.  A year ago he had no cavities... Now he has bad decay on three baby teeth.  This is a kid who wouldn't eat candy to save his life.  George and I might not have been as on top of dental hygiene as we should have, but I still blame chemo.  When you have so many battles to pick, it can be hard to pick anything you aren't forced to.
We also did some tests the other week on Clayton's blood and kidney function.  The tentative game plan for his kidney is to do a stent replacement in January in Pensacola and our urologist there will have one of their Nemours colleagues from Orlando with them.  That way the colleague can get a feel for Clayton's kidney and ureter and help us to make the best long term plan.  It looks as though any major surgery for that might be done in Orlando.  Mickey Mouse!!!  (no time frame for any long term surgery yet). At least if we have to go through hell, we'll be surrounded by magic!  Looking for the light people.
On the vaccine front... One of the reasons I love our Nemours team is because when I was speaking with them about vaccines, they didn't dare try and push them on me and they didn't turn us away...instead, they said let's test his immunity and see if any further vaccines would even be necessary before we think of having a conversation about it.  Sounds like a plan to me!  They respect and practice my own pursuit of doing what is necessary and avoiding what is not.  Love.  So they drew the blood for the testing and we'll know in a few weeks.  Love that approach.  Love, love love.  I'm all about reason and compromise and protecting my sweet boy any way I can.  I just need to know as a parent, that the means are necessary and have to do with what his body needs and not with policies, politics, big pharmaceuticals, bottom lines or blanket solutions, etc.  Because my bottom line is what is best for him.  I just keep loving our Pensacola oncology team more!  
Like I said last time though, I hate having to leave his old Peds office.  They helped us SO much over the past 6 years and they will be missed.  I'm still disappointed in the situation, but I will miss them nonetheless.  Our new close to home oncology team helps fill that void though :)

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 emotions...so 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...

October 14, 2014

Hi...

So I'm back.  The cancer isn't.  At least we hope it isn't.  We just scanned again and I'm waiting on results.  I continue to have folks tell me they miss the blog and maybe I miss it too... Not real sure.  But here I am.  Not sure how often I'll be here.  But right now, I'm here.  I feel a bit like I'm resurfacing...because yes, I have definitely been hiding out while I worked through things.  There have been times that I have been appropriately emotional, times I have buried it and times I have been down right hormonal over the past three years. I needed time.  And I still have no room for grumps...FYI.


Quick catch up...Clayton is doing good.  He is an ever-loving mess!  It amazes me that something so full of life and joy can scare me half to death everyday.  Right now he is obsessed with letters.  He loves to run around the house grabbing his letters and the objects that start with those letters.  E is for his suede elephant, F is for frig, M is for mama.  You get it.  He loves to learn and wants to learn so badly.  We decided homeschool is best for him.  With all of his health complications, it is hard to put his well being 8 hours a day in the hands of someone else.  Also, the honest truth is not everyone raises children to behave as they should towards people with challenges.  I will not put my child through that more than is absolutely necessary...because whether he may ever be aware of any rude behavior by others, I would be aware...I feel confident the school system would not offer enough mediation services to tackle that situation.  It is best that he is homeschooled.  Period.  I don't care what anyone thinks about that decision and I have zero desire to listen to anyone's opinions on the matter.  It is mine and George's decision, it is made, it will not change and I would hate to be rude to someone because they cannot respect our decision.  I mean all of that in the nicest way possible.

We have been thrilled to find a new oncology home at Nemours in Pensacola.  It really has been an incredible experience for us over there.  We have been trying to consolidate so we now have a urologist, nephrologist, oncologist and Pulmonologist all in one spot.  They work with Sacred Heart and the atmosphere is just awesome and comforting...close to that of our MSKCC team, whom we miss desperately.  On that note, to come full circle, we are working with USACW to help them with what we can to see them build a wonderful facility and team for our local kids.  In June, we met with them and toured the new facility and were thrilled to be able to donate $10,000 from The George Clayton Childhood Cancer Foundation to fund one of their new PICU rooms.  That donation of course was made possible after our successful Angel Auction this past March that was supported by local artists and businesses!  Having the foundation is a way for George and I to work towards giving back to our community and paying forward the kindnesses shown to our family so the whole thing makes us very happy!


We built our house and moved in mid June.  Our own little livable chunk to call home all for $56,000.  Yep.  We built a house for $56,000.  Everyone laughed at me when I came up with this idea, but one year later here we are!  It was a long winter and spring, but we did it ourselves.  Building a house for that price of course means there is always an unfinished project to do, but we'll get there.   This was all part of my grand plan to change our life from what we want to what we need and to adjust it to what we needed for life with Clayton.  It's still a process, but we are learning.  It's all about less is more and quality not quantity.  I will say this though, I LOVE having a smaller house.  Sure, you have less storage space and you have to decide what is really important, BUT it is less to clean which means more time for things that matter!  My favorite part?  A small bathroom!  Yes.  I LOVE having one small bathroom.  I mean LOVE it.  I mean really, who likes cleaning bathrooms?  Not me!



This was about a month after we moved in, when we were in the process of doing battens and cleaning up the outside from construction.  Truth be told, there are a few battens left to finish...it's been hot!  We moved in as soon as we could knowing there was a lot to finish.  When I say as soon as we could, I mean we did what we had to to get the certificate of occupancy and moved in a day after we got it.  It looks much less like a construction site now and more homey... I'll have to get another whole house pic soon.  Over July and August, we didn't do anything that wasn't absolutely necessary because of the dang heat.  Hoping we can make good progress as it cools though. Obviously the list is long, exterior paint, cover porches, lattice, etc.  We'll get there.  One thing that tends to confuse people though is that they think $56,00 must mean a "blah" home.  Not the case.  We have granite counters, stainless steel appliances, nice floors, nice lighting fixtures and fans and even a subway tile bath surround. $56,000 was all about deciding where it was important to put money, to hire people, to DIY it etc.  So while the house isn't "blah" and we do have nice things, we used our heads and really focused on where it was important to spend money; such as on the septic tank, sanitary plumbing only, HVAC, drywall.  Along with family and friends, we dug footings, poured footings and built block piers and filled the block all ourselves.  George built the entire house from the ground up.  The only thing he did not stick build was our prefab trusses.  But we did raise them and install them ourselves.  George and two of our good friends roofed the house.  My family did the electric work.  I thrifted our bathroom vanity and made our vanity top myself out of lumber from Lowe's.  We bought raw unfinished cabinets, installed them ourselves and I am finishing them myself.  We installed our own floors (that we got on a mega sale from Home Depot).  I tiled the bathroom floors and tub surround myself.  I scored some mega deals at Lowe's and got all our stainless steel appliances for under $1,000.  George built our porches (which are patiently waiting to be covered).  And the little bit of landscaping we did involved a buddy grading our slope for us and every piece of sod or plant was done by me.   We only did necessary landscaping to avoid erosion because of our slope.  And I have done all of the painting myself.  Oh and our counters were made possible thanks to getting a great deal at Coastal Stone and Cabinetry.  So we have nice things, but we didn't splurge or anything.  We got basic quality things that would last and not need to be replaced in a few years costing us more money.
The only reason I throw all of that out there is because I know some were curious and I think others misunderstood what we were doing when I previously stated we were building a house.  There is a difference between building a house and having a house built.  Having a house built is costly.  Building your own house is frugal.  It isn't easy, but there is such an enormous level of satisfaction from building your own home.  



We had a lot of friends help us out with the house for which we are eternally grateful, but I have to thank three men most of all without whom the house would have never been done...of course George, but then also Mike and Buck.  Clayton says thank you for his house!


...This past year has undoubtedly been a struggle.  Oh hell, the past three years have been a struggle.  But things for us got really scary after the two severe respiratory episodes Clayton had nearly two years ago.  Then last summer...there are no words adequate enough to describe the trauma I endured from last summer.  I have been trying to recover.  Why me and not Clayton?  Because he is a champ and bounces back in style...I on the other hand have to find all of my pieces and put them back together one at a time.  Adults just don't bounce back like kids.  I am really hoping now that we are in the house, things will slow down, we can find peace and we can keep recovering from everything.

One of the things I'll open up more about on here is finances.  After some conversations I have had with some folks I have realized how much people truly to not understand the financial implications of having a child with health problems.  This isn't something that is simply our issue, it is something that is a national issue when it comes to healthcare for children and people need to be more aware of these things to solve the problems in the future.  So I figured I would be more open about that and share.  We were so fortunate in the beginning to have had a secondary insurance for Clayton that helped cover his many many hospital stays.  But during this process, we lost our secondary insurance and have been trying to find our way through the medical bills since then.  It's like every time we get everything taken care of, we are three months down the road and looking at a whole new round of medical bills.  For Clayton alone, we have a minimum of $450 every three months in out of pocket medical expenses.  That DOES NOT include ER visits, sick baby/problem doctor office visits, ambulance rides, hospitals stays, surgeries, past bills, traveling expenses, medications, or the special needs of a special needs child, etc.  That is only to check in with his specialists once every 3 months and to pay a $200 facility fee for doing his routine scans. If we could put all the past stuff behind us, it might be more manageable.  Might be.
THANKFULLY, we have had the AMAZING support of Mulligan Ministries and Barnwell Baptist who have so graciously devoted their fundraiser the past two years to Clayton.  Without y'all, I truly do not know what we would have done.  I really don't.  We have also been fortunate to get support from Jensen's Heart of Gold and Angel Ride.
So THANK YOU to these people, these foundations and to the folks out there who love and care about my sweet baby boy!


P.S. On the financial topic, a few people were confused about The George Clayton Childhood Cancer Foundation.  Our foundation, benefits local children's hospitals and pediatric cancer research.  It has ZERO impact or connection to our finances.  We just don't want anyone getting that confused because as a non profit foundation, no one can profit from our foundation's activities, so that is a BIG, very important distinction for folks to understand.

February 12, 2014

A Farewell...

To say I have struggled with this post is an understatement.  I have added to it on and off for nearly two months.  Some people may think why, we just want to know how Clayton is that should be simple enough.  The thing is though that this blog was always more about me then it was about him.  I needed an outlet.  I need something to keep me grounded.  During the most traumatic or infuriating moments in this whole process, I found that if I was thinking something I wouldn't write, then I need to not think it either.  That is not to say that I have poured everything I have into this blog because I haven't.  There has always been a lot that has stayed with me and me alone.  But for the past two years, this blog was my way of forging a path through my son's cancer that didn't leave me completely bitter or in an ever-lasting pity party.
What I've done is found myself on this interesting ride.  I have found myself not just fighting cancer, scoliosis, kidney disease and autism, but also figuring out what happiness really is.  I cannot in words describe the satisfaction I feel for the lessons I have learned throughout this journey.  The lessons I am most thankful for is for the lesson in happiness.  I have watched people these past two years.  I have watched friends, family, strangers and politicians.  I found that there are some amazingly wonderful people out there that will defy your expectations every single time.  If you have a good family, they will stick by you, thats what family is suppose to do right?  Well, we've been lucky to have family like that.  Family that has stuck by and supported us...take my mother for example, she walked away from a paying job because her grandchild came first; she found she couldn't support him how she wanted to and work, so she just walked away.
Friends are another story.  You can think you have these really amazing friends, but when something like long term complications with your child happen, you really learn what kind of people they are.  Because believe it or not, people get sick of the "little sick kid".  YES.  Not everyone, but there are those who rally behind you like you are a cause only until they tire of the attention you are getting or realize that your child lived.  Yep.  I just said that.  Because there are a select group of people that help you because it makes them look good or feel good for a moment and then they realize that your kid is struggling, but isn't going anywhere and that would require more effort and more love than they originally wanted to put into the whole thing.  Sounds horrible right?  I think it is down right pathetic, but I thank God for the moments where I get to learn what people are really made of.  Be them friends, acquaintances or strangers.
We have been so lucky with friends.  My old friends live all over the country from Birmingham to Maine and Hawai, but not George's.  His old school buddies pretty much all live around here.  It is through them that we have had the most amazing system of support.  They are a great group of guys and I never hear George talk to any of them without answering, "how is Clayton?"  And for the friends that have wives or girlfriends, those ladies have been AMAZING!  I would love to call everyone out and thank them, but I probably shouldn't do that here, so instead, I just hope they know how awesome they are.  They have always been there and never forgotten the battles our son faces on a regular basis. To them our child was never a cause; he is a little boy who got dealt a bad hand and needs the love and support of as many people as he can get.  Not to leave out the friends George has made through work as well who have been equally as awesome and supportive!  I personally see them less often, but they have been wonderful to our family in so many ways.  One of these friends even offered to let us drive his car to Texas because it got better gas mileage!  We refused the generous offer, but it is just an small example of how supportive they have been.  I do hope none of our friends ever gets offended if we don't socialize more.  We...well, we are just tired all the time right now.  It's been a long five years for us (especially the last two) and we don't mean to be recluses (particularly me) it is just very draining to have a child that needs so much.  That is not a complaint, because I know how blessed I am, merely an explanation for our lack of socializing.
Then there are the families that get their kids involved.  That means so much to me because by getting your kids involved you are helping to build a better future.  Sounds like a dramatic statement, but it is unbelievably true.  Everything we have been through has really shown me the importance of exposing children to these sometimes harsh realities.  Doing so makes them stronger, kinder and more generous.  Some of the most amazing people I have met on this journey are the siblings of or other children who are close to the kids suffering with different illnesses.  These kids who are involved are some of the most amazing and most appreciative PEOPLE I have ever met.  They love life more, they are more determined and ambitious in the right ways...they are just amazing kids...and they care which is the most important thing.  So let your kid learn the sometimes harsh realities of the world.  Let them know and love a sick child knowing the day might come when they cry because that child's life was lost.  Encourage them to spend time with the children with learning disabilities because it is those children that will show them how to love in a way that nothing else on this earth can.  Doing these simple things teaches kids love, tolerance and caring above all else and encourages them to be the future researchers or advocates that our world needs.
Unfortunately, with all of the good, comes the bad.  It is the bad that caused my love for this blog to waiver.  I tired of having a few people question my life based on the words on this blog.  Why are they building a house when people are donating money to them?  Why are they getting a new refrigerator?  Why are they doing this or that blah, blah, blah...I got tired of being made to feel like I had to answer to people for the choices I was making because I don't.  I answer to God just like everyone else and that is it.  For some reason the people judging me didn't have the intelligence to realize that this blog is not a full representation of my life and that there are details of which they know nothing about.  It's sad that when you have a sick child and good people try to help you that you then become a target for the bitter folks out there.  We have done all we can to come out of this with our heads above water.  We are now trying to sell our home and are building a 1,000 sq ft one bedroom house on free property.  We are doing this because we know that we need to be in a financial situation where we can afford to take Clayton where he needs to go without relying on the generosity of others.  We know that while our financial burdens and our dependence on medical help with Clayton will be a lifelong battle, we know that others forget.  We also know this is our life made up of our choices and it is not anyone else's responsibility, but our own, so we are trying to better prepare ourselves for the future having learned the lessons we have now learned.  I can assure you the idea that we will probably spend the rest of our lives poor because of paying for our son's medical needs is not ideal.  But we love our child and chose to revolve our life around him and to jump through hoops to keep him here with us.  He is so stinking amazing, we would be stupid not to do absolutely anything we could for him.  So rather than struggling and sacrificing time with our son to make more, more, more to have the life we always thought we wanted/needed, we are adjusting our thinking and building a life based on what we have right now.  We are building a life based on what we need over what we want...it's a process, but we are doing it.  Our lives haven't stopped just because our son is dealing with cancer, kidney disease, severe scoliosis and autism.  We still get sick and get flat tires, our AC and refrigerator still crap out, and when we try to do the right thing financially with our mortgage company, we still get bit in the butt because the system only helps those who have screwed up, not those trying to be responsible before it is "too late".  So yes, we have spent money during the time when people gave to us, but Clayton's fund has always been his fund for his needs.  Not for mine and not for George's.  Oh and the couch? Simple...I worked my but off to graduate college, I got a job, my kid got cancer I was tired and exhausted and everywhere I turned something was covered in puke, poo or blood and damn it I deserved it.  We deserved it...so we used birthday money, then financed it to pay $50 a month...it had nothing to do with Clayton's fund so kiss my butt you bugger for pestering me about it!  We deserved a dang pick-me-up!  And as for the twit who tried to cry foul because George and I took our son on two different weekend excursions in New York while up there for treatment... As I said before it was the WEEKEND not a weekday.  That aside, I pity the fact that you appear to be not only a selfish person, but someone who sadly is jealous that a family struggling with childhood cancer had two awesome well deserved days of fun.  But before this person goes thinking we had too much fun let me suggest they learn a thing or two about the difficulties of having a child with learning disabilities.  Even trying to provide these children with fun can often be a struggle. Whatever is going on in your life should not be projected on others and it sounds as though you have personal issues you need to work on.  I have come to realize just how horrible people treat each other and it is ridiculous!...and I don't want that nonsense and the folks dishing it out in my life.  Sadly that means no more blog.  I have too many things in my life that could bring me down.  I refuse to let other people's negativity be one of them. So this is my goodbye...
To all of our followers that truly care about my family and particularly about my son, I'm sorry I basically deserted the blog and I am semi sorry it is now over, but I have been so gosh dang tired of those people with something to say.  I live in a world of 50 shades of crazy and am in no mood for a bunch of grumpy you-know-whats trying to give me crap.  So pretty much my bitterness ruled the blog or lack there of.  It didn't help that I found myself in a few situations (or at least witnessing them) where people treated each other so disgustingly out of insecurity and desperation.  At the end of this life when each of us die, it isn't going to matter how much money is in our account or how many people we were in charge of at work or how many situations we were able to control or what our job title was or even what we say.  The only thing that will matter is how we treat people and this past year or so I have witnessed some of the biggest hypocrites ever!  People I thought were good people who really live lies or who are only good people when it benefits them.  Everything has just been a roller coaster and eye opening over the past couple of years.  In both good ways... And bad.  More than anything I am just immensely disappointed at how people treat each other.  Especially those who are suppose to be good Christians.  The manipulation, deceit, lies and general rottenness I have seen from individuals, politicians, doctors, nurses and strangers has definitely shown me the kind of person I NEVER want to be. It has instilled an unfortunate disappointment in our society.  At the same time, there have been those shining jewels of people who have taught me exactly the kind of person I would like to grow to be.  I have seen selflessness and thoughtfulness beyond measure and I have seen those who have dedicated their free time to help my family and others far beyond what would have been expected from anyone.  I hope those people do know that there has not been a single gesture that has gone unnoticed or unappreciated.  And nothing I said here is meant to sound as though I think I am amazing and sweet and perfect.  Hec no!  Quite the opposite,  it is not uncommon for me to be a bit bitchy and self absorbed.  But I can say I am at least a self-absorbed bitch with a heart of gold who consciously chooses not to screw people over even if it were to somehow benefit me.  I am taking my experiences these past few years and am grateful to use them to become the kind of person I would like to be.  I have learned so much from the wonderful people that are in our lives and from the wonderful strangers that have made us a part of their lives.  I am so thankful to each and every one of you.
To everyone that should have received a thank you note, I apologize, that is definitely my self absorbed side coming out.  I get caught up in what is happening to me at the time and everything else gets pushed aside.  I am sorry if that is seen as a measure of my family's appreciation or lack there of, because I assure you there is no connection.  It is simply a personality flaw I have.  I am pathetic at correspondence.  I despise talking on the phone, I read e-mails and Facebook messages and often later forget I never responded and I pretty much never mail anything.  Seriously me and the post office are the two sides of magnets that just push away from one another.  We do not go together like peanut butter and jelly or anything else.  I still have my brother-in-law and sister-in-law's Christmas gift in my living room to mail to them.  So to those people, I apologize, and I do hope you do not interpret my lack of a thank you note as a lack of appreciation.  I am simply more of a face to face kind of person.  There are a number of people whose necks I wish I could hug...cough, cough, Sandy and Chris...still waiting to run into y'all!  Absolutely amazing people!  So if someone did something and did not receive a thank you, please just know I am more of a face to face kind of person and I am probably just waiting on the day when I can hug your neck.  I also know there are some people that have done things and don't want to be called out or recognized for them, so for those people if I don't say anything or say very little, it is simply because I am not sure that you want me to.

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For a while during C's cancer I allowed myself to get caught up in things I didn't really care about because I wanted anything to distract me from my reality and the fear it involves.  Then for months now, I have allowed all of my disgust and bitterness towards these situations/people to overshadow my family's gratitude and blessings.  But slowly I have found myself again.  I have embraced my reality rather than distracted myself from it and I have come to be more excited about life than ever before.  We are selling off many of our things and simplifying our lives in an effort to live a more peaceful life.  I am pretty much going hippie-eco friendly-toxin free-organic-4H wannabe kind of crazy on George.  But it's OK because in a world were I go crazy worrying about Clayton (seriously crazy-words can not describe the fear I live with these days) I have found a way to feel good about our lives, the things we are putting into our bodies, how we are caring for ourselves and the impact we are having on the environment.  It is something that doesn't distract me from my fears, but rather allows me to embrace them and fight back.  It's all something I can feel good about.  And aside from my own health complications I am currently battling from stress, years of bad eating and other factors TBD, I am more happy and content with my life and sure of where it is going than ever before.
So to the hypocrites, good writtens.  As for the grumps who like to sit behind computers and judge others...you can check me off your list, because my life is not your's to judge.  For those sweet people who truly care about my child and our family...you know where to find us at the store and if you want some real time updates, friend me on Facebook or you can check out Clayton's GoFundMe page (when I get it made I'll post a link on this blog) for very simple updates.  And for the ones who just like reading my crazy rants, there is a blog somewhere out there that will still be publishing those too...if you know me well enough I would suspect you will be able to stumble across it one day.  Or you can Facebook me and ask.  But I'm not publishing it on here because I suspect the grumps won't have the courage to ask me the address so hopefully that will help keep that blog grump free.



As for Clayton...he's doing good.  Just waiting to do scans...  Thank you so much to everyone that cares about my family and especially about Clayton.  If the cancer ever comes back, so will the blog. Praying we don't see each other again!

Oh yea, as for my test results, no cancer activity at this time.  They hope it will remain that way and we'll do MRI's at six month intervals to monitor it for changes/stability.  Thanks for the prayers.

February 6, 2014

Post Coming...

I have promised a post is coming and it is.  A couple days later than I intended, but it will be here.  Promise.  I have had some health issues I have been trying to sort out the past few months and in trying to figure those out, we found a place on my hip that is in need of further testing.  Unfortunately, I have had to put that test off in order to take Clayton to appts, which has just meant more time for me to think about it all.  That said, I am doing the test for that tomorrow and I was not worried about it at all until I realized I knew someone who lost a parent to bone cancer.  Since that realization, my mind has just been "ate up with it."  So anyhow, it probably is nothing, but with the way my world goes I wouldn't be totally surprised if it was something, so please pray it isn't.  Test in the morning...I will post as soon as I find out results and can get that off my mind!  So to those I have promised, it is coming!