To 2017 & A Lifestyle To Love

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

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

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

Where our perspective came from…

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

“I wish I had made more money.”

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

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

“I wish I had stressed over work more.”

“I wish I had a bigger house.”

“I wish I had a fancier car.”

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

“I wish my house was in perfect order.”

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

“I hope people don’t see my flaws.”

“I wish my house was full of antiques.”

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

“Dear God, don’t let my kid die.”

“What the hell is happening?”

“How, how the hell did this happen?”

“How much time do we have?”

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

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

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

“He is the only thing that matters.”

“I promise we will change our ways.”

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

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

Where our perspective has taken us…

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

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

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

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

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

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

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

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

Home From Kidney Adventures 2016

We're home!  Made it home Sunday evening.  What a trip.  We actually went down on Saturday, October 29th to celebrate Clayton's birthday early in case he was in the hospital later.  We camped at Fort Wilderness and enjoyed a character dinner with Clayton and Mickey's Not So Scary Halloween Party (our only visit to a park).  And on Halloween day we relaxed in Fort Wilderness and enjoyed the festivities while cruising around the Fort in a golf cart.  More on that brief vacation side of the trip in another post though.

After two days of forgetting our reality, it was back to business on November 1st.  George, Clayton and I went to Arnold Palmer and did pre-admission paperwork and testing and then went to see the doctor.  While I had previously met this urologist, George had not.  I was glad he got the opportunity to see what I saw.  This doctor is a rare one.  You just know he is special when you meet him.  I think it made George feel better meeting the man who's hands would be doing such important work on our child, especially because George wouldn't be there.  Since George is getting a new boss and all, we decided it was best for him to come home and for my mom to stay with me (my mom and stepdad joined us on the trip...but stayed in a cabin as opposed to camping).  So George left the day before the surgery.  

Once at the hospital,I asked Clayton to smile and this is what I got...

The reality was this...

He was mad at me and shaking he was so nervous.  Once out of surgery, it was a slooooowwwwwwww process waking up.  I had to try getting him dressed and everything just to get him even slightly awake.

But once he woke up, it wasn't long until we saw this...

and then the fevers started.  Yes I say fevers because they came a went a bit as we battled them with Tylenol.  Then my mom went back to the camper and I stayed the night with Clayton.  I kept trying to encourage him to pee, but he was obviously in pain and wouldn't in the beginning.  Finally, I put him to bed hoping if I woke him up a while later he would be so groggy, he would not think abut the pain.  It kind of worked.  He legitimately tried to pee I felt, but didn't get more than a drop out.  This was 12 hours after surgery in the middle of the night.  Sadly, this meant we had to do a catheter.  We had two nurses try and God help, all I could do was tell Clayton how sorry I was.  I felt so horrible.  I have never felt that crumby with him before.  He has come so far and has such a heightened awareness of everything around him and he does truly try to cooperate for things and after all of his cooperation to have to turn around and do this made me feel like total shit.  I started bawling while holding him down and repeating over and over how sorry I was.  The nurses probably thought this is why we don't want parents around; they can't handle it.  A sentiment we have heard expressed before.  Completely untrue though.  I can't tell you how many times I have had to hold that child down while he screamed over ports, catheters, you name it.  And bawling is not a normal part of my routine.  This time was different.  It felt like Clayton had held up his end of the bargain and somehow I had dropped the ball on mine; even though I know that wasn't the case.  Of all the things we do with Clayton and all the things he now cooperates with, he remembers catheters from the past and wants his "boyhood" left alone.  Doctors can't even look at it without him getting all protective.  So to put him through another catheter really sucked.  The only reason he came out of surgery without one was because the doctor felt things went so smoothly he wouldn't need it.  Which was not the doctors fault.  Clayton did not need a catheter with his last stent replacement so there was no reason to assume he would need it now.  Also, our urologists have commented that they like to be cautious about stents and catheters because sometimes catheters can get caught on the stent and dislodge it.

So anyway, the first night post-op (which if I forgot to mention we obviously spent in the hospital) was a rough one between fevers and catheters.  Oh, I never finished...neither nurse could get the catheter in, so the doctor came in around 2 in the morning and placed the catheter himself.  So Clayton had to go through that "trauma" essentially three times.  Not fun for either of us.  While waiting on the doctor, Clayton and I went back to his room and I just started bawling bawling.  The kind where you can't even help being loud cause your crying so hard.  I felt like total crap for having to do this with him after he had been such a champ about everything.  Thankfully, when the doctor got there, he placed a catheter swiftly and that was done.  I don't know the logistics, but for some reason, Clayton is hard to place a catheter in.  This was not the first time nurses couldn't get it and doctors had to be called in.

The next day while waiting to see if we would be discharged, his ViVi got him this...

We had no idea if we would be discharged or not because he had started getting sick the night before surgery and it had progressed.  We weren't sure if they would try and hold him for that or not.  Then he went a spiked a fever when they were preparing discharge.  But they still let us go, knowing we were staying locally for his continued recovery.

So back to the camper, Clayton got to be surrounded by all of his "bay-bees".  Sweet bug just laid there with the discomfort of his catheter.  We hung out for another day, which was incredibly long as we were stuck in a camper unable to do anything.  Sunday, we cautiously headed home.  A journey that was not without it's bumps including some vomiting for Clayton.  All in all, the journey looked something like this...

Mickey seat belted in the passenger, mom in the back sometimes dozing off and Clayton cradled by "bay-bees" and pillows and post vomit wrapped in towels after we stripped him out of his dirty clothes.

An interesting ride to be sure, but Clayton was happy to be headed home.

I got to remove the catheter just before bed Sunday night and we had pee first thing Monday morning!  We have since been recovering from an emotionally charged past month and especially past week.  Clayton is still sick and I'm trying to get him well so we are laying low at home.
And of course tonight all eyes in our house are on the election results.  Crazy times.  On election night eight years ago, I was in the hospital giving birth to Clayton and my life changed forever.  I'm a little scared to see what tonight brings given how dramatically my life changed last time we had a new president (even though it wasn't purely because of a new president, but rather because of my baby man).

Medical Monday: Getting Through Sedation

So I spent the last few days of my twenties doing the thing that has come to define my twenties...taking Clayton to the hospital.  It somehow seemed ironically appropriate.  Since the doctors weren't satisfied with the CT results from June, they had us do an MIBG scan last week.
One of the things that has changed with scans over the years is how we get Clayton sedated.  Last week was no different.  For years he had a Hickman or a port and so he was either already accessed or had a port to access directly and there was no need to "search" for a good vein.  Renal patients by the way are not the easiest sticks as I understand it.  Once the port was removed last year, we had to navigate new territory figuring out what worked best for Clayton and then the anesthesiologist and myself as the parent.
As a parent having someone stroll away with your child who is scared out of their wits (and always often screaming) is the most horrible thing...at least for me and George.  Once Clayton is asleep I am greeted with overwhelming relief, but getting to that point is not always easy.  And not all anesthesiologist abide by the same "rules".  Some prefer parents help, some refuse to allow it.  So as the parent you never know what you are going to get.  Only twice have I ever had to request a different anesthesiologist and it was the same guy both times and my mom was my witness this guy had issues.  Serious issues.
Hospitals also have different policies as well.  In Birmingham, they always carried him away awake without being accessed.  It was hell.  George and I had to sit and listen to Clayton screaming from behind closed doors.  It feels like such a betrayal from a parent to a child to send your child with strangers to poke and prod.  MSKCC and Sacred Heart tend to operate on the same wave link which is nice for us.  They are most concerned with making the child as comfortable as possible and if that means they have to step ever so slightly out of their comfort zone then they are OK with that.

What I have learned about sedation with children is this:

- Surgical procedures are the exception and you never get to go back there with your kid.  But they typically give them versed prior to going back so you are at least met with the idea that your child shouldn't remember the moment you sent them away with strangers.

- Don't be scared to ask.  You have the right to ask anything you want and that means special request to accommodate a child.  You might not get the answer you want, but don't let that stop you from asking.

-A lot of times hospitals and anesthesiologists, nurses, etc. have this notion in their head that they are somehow sparing the parents from seeing something done to their child.  Maybe you are the kind of parent that can't handle it without yelling stop, stop or something.  But if you are more concerned with easing your child's anxieties than shielding yourself and you know you can handle it, then make that clear to whomever needs to know.  Every time I hear, "If this is going to bother you you can leave," or "we do this for the parents," I can't help, but laugh.  All I can think is I have been through way worse.  Granted many people haven't, so they have to decide for themselves what they can handle.  My personal experience has shown my heart much prefers to stay and comfort my child as much as a can even though I know he will still be distressed.  No one can comfort a child like a parent.

- The first time Clayton was ever sedated with one of us, it was George. This was about a year before his cancer diagnosis.  Clayton was held by George as they gave him some propofol through an IV to sedate him for a scan.  I remember after, George said, "Thats horrible, I never want to do that again.  It felt like he died in my arms. "  Little did we know.
My best advice is let the doctors and nurses focus on what your child's body is doing and if you are holding your child hold them firmly because their body will go limp as the propofol hits their blood stream.  As the parent focus on the fact that you just eased your child's experience with this traumatic situation and they are now peacefully sleeping.  Clayton and I usually count to ease his anxiety.  Sometimes we throw in an ABC song. Whatever works and keeps him focused on me and not them.

Anyway, since having Clayton's port removed, things have changed and we have been trying to figure out what works best for him.  Back in March they took him back with the intent of giving him nitrous and then getting an IV.  This would have been the second time we had done it this way with us waiting in the waiting room.  He fussed a little this way, but it didn't last long because of the nitrous.  Well, this time, the anesthesiologist wasn't in the room yet and they decided to go ahead and try to access him.  Big mistake.  Huge.  I was outside the CT door listening to him scream like mad and even my mom in the room down he hall could hear him screaming.  She kept poking her head out of the door looking at me with a question mark on her face.  Since then, the nurses have made a point to bring me back every time, even for the nitrous part.  I didn't even have to ask, they just knew that was what was right for my kid.  I always held him as he was put to sleep when he had his port and hickman, so the only part of this that was new to me was the nitrous.
So last week, Clayton did even better than the time before.  He had tons of anxiety of course, but there was minimal screaming and I held him the whole time he got nitrous, while they got IV and all the way until he got the propofol.  We counted and sang; anything to get him through it.  Which he did and we found a rhythm that works for everyone when it comes to Clayton sedations.  Whoop, whoop!

We are waiting on the results of those scans and might not hear anything until next week.  Which isn't awful because if they don't call before then, then at least we know there isn't an emergency.  We are also still waiting to hear about the scheduling of his kidney procedure.  As luck would have it, his urology nurse is leaving Nemours and so in addition to the other complications we now have to work with a new nurse practitioner trying to get up to speed on all of her patients. So we wait, wait, wait.

Meet Clayton

Let me start with a disclaimer...Don't be stupid and go Google the information I am about to disclose and use odd, out-dated and misguided information floating around on the web to make determinations about my child or place limitations on him.  I will give you all the information about the subject and what it means for Clayton and what we know right here on the blog and I will point you towards credible resources of outside information for all those who want to know more.  So please don't be stupid and insult my child by looking at photos or reading misinformation and using it to shape your perception of Clayton.  I am determined to protect my son and not allow ignorance and misinformation to limit him.  Therefore, in disclosing this closely held secret of mine, I am also providing credible resources on the subject.  

As a second disclaimer, I am letting the universe know that this is my conversation about the subject.  I have NO desire and am NOT willing to discuss this with anyone.  What you see below is all I have to give for now.  There is nothing left to know beyond this, but my feelings and thoughts will not be discussed outside of this blog unless I choose to bring it up.  I ask that you please respect that whether you understand it or not.

Meet Clayton...Clayton has Sotos Syndrome.

This is incredibly hard for me and a very very long time coming.  I have been keeping this in for years now.  It has been mine and George's secret because I needed it to be.  I needed to give Clayton a chance to see where he was headed before I put a name to his genetic mutation for the world to see.  I needed to give Clayton a chance to see how little this genetic mutation might influence his life.  I needed to see what would be...what could be.  At least for a little while.  I feel like I have a decent idea now.  Enough that I am willing to finally share this information with our friends and family...and the strangers reading this blog. (this is even the first time our parents are getting this information)

When I was pregnant with Clayton certain complications were indicators of a potential underlying syndrome, but the doctors ran tests including an amniocentesis and found nothing.  When Clayton was born the doctors did a more thorough genetic work up while he was in the NICU and again they found nothing.  At that time, George and I didn't necessarily know anything was amiss, but we knew the doctors were still curious.  Eventually we came across a doctor that had us do two tests to test for two potential disorders.  One was a blood tests for a disorder that came back negative and the other was a bone density test that had the results come back a certain way would have indicated Sotos Syndrome. The results did not indicate Sotos Syndrome.  Moving forward the insurance would not cover further testing so everything was just put on pause (the blood test for Sotos would have cost thousands without insurance).  Once Clayton was diagnosed with cancer, insurance once again covered testing.  So the doctors ran blood tests for a few items to check.  A few months later while sitting in the Oncology Infusion Clinic at USACW, the geneticist found us and gave us the results.  We were in a room full of people and in the middle of a cancer battle and just couldn't quite focus on what we had been told.  So we said nothing.

Slowly over the coming months, we talked it over with each other and had a real conversion with the geneticist.  I told George I needed time with this information.  I was worried people wouldn't understand something so unfamiliar.  If I say Autism, people know enough not to feel the need to Google it.  If I say Down Syndrome, again people know enough not to feel the need to Google it.  If I say Sotos, people are going to be like, "what?".  So for years we have just told people Clayton had Autism.  It was the easiest thing to do.  And not a lie.  Sotos causes learning disabilities that can sometimes take on the characteristics of Autism.  So Clayton IS Autistic, but it is a symptom of the Sotos.

So why the secrecy?  I guess that's a two part answer.

Part I: People aren't always smart.  They don't always know how to weed out the credible information from the crap.  Simply put, I did not want people using outdated, misguided, misinformation or photos to form perceptions or place limits on my child.  I feared as soon as folks started Googling Sotos that would start happening.  I feel like I was protecting my child and giving him a chance to prove himself and what he was capable off without any stigmas.

Part II: Maybe my secrecy with this doesn't make sense to some people...and guess what? it doesn't have to.  But for me, acknowledging this out loud to the world is like accepting all of the things Clayton will never have.  All of the things George and I will never have with Clayton.  As a parent that is heart-breaking.  Heart-breaking in a way that unless you have a child in a similar situation you can never know how gut-wrenching it truly is.  Eventually I will elaborate on this one in another post.

That said, Clayton is this bundle of innocence and pureness that this world is missing and I am so lucky he is in my life and so blessed to call him mine.  Life with Clayton makes me feel sorry for people who won't get to grow old being witness to this type of innocence everyday.  I think we all need that.

So what is Sotos Syndrome?

Below I'll introduce everyone to Sotos Syndrome and tell you all the ways it has influenced/affected Clayton's life so far.  It will bring some things full circle and show the connections between his various challenges.


Sotos Syndrome is a rare genetic mutation characterized by excessive physical growth in the early years of life.  Sometimes called cerebral gigantism (large head, large forehead) as well.  In addition to physical overgrowth, Sotos often affects muscle tone, speech, motor skills, cognitive and social development.  The result can be a child who looks older and acts younger.  Often times in late childhood, the gap between children with Sotos and those without Sotos begins to close.  Sotos plays a large role in developmental timing and many adults with Sotos fall within the normal ranges of size and intellect.  Roughly 95% of cases are from families with no history of Sotos.

Below is a list of characteristics/features associated with Sotos and their rate of occurrence.  I've highlighted the features we know Clayton to have and marked through the ones we know he does not have.  Those characteristics not highlighted or marked through are still possibilities.

Features seen in most children (80%-100%)

• Macrocrania (large skull) without megalencephaly (large brain) no mention of a small brain
• Dolichocephaly (high, narrow skull) I don't think so
• Characteristic structural changes in the brain on MRI (extra fluid, midline changes)
• Prominent forehead, “receding hairline”
• Apparent hypertelorism (eyes look wide-spaced despite normal measurement)
• Rosy coloring over the cheeks and nose
• High arched palate (roof of mouth is narrow and arched upward)
• Increased birth length and weight
• Excessive growth in childhood
• Disproportionately large hands and feet they are BIG, but I don't know about disproportionate?
• Low muscle tone one doctor said he had this which makes no sense to us because every doctor/nurse ever has commented how strong he is?
• Developmental delay in the form of Autism
• Expressive language delay

Features seen in the majority (60%-80%)

• Advanced bone age (above 97th percentile)
• Premature tooth eruption, soft enamel this combined with his chemo was a disaster
• Poor fine motor control odd because some fine motor skills are poor and others not?
• Down-slanting palpebral fissues or “antimongoloid slant” (eye openings are lower in outer corners than by nose) one doctor said he did 
• Prominent, pointed chin I think his chin is a little pointy
• I.Q. in the normal range (>70 I.Q.) NO IDEA YET So far he is smart, but silent :)
• Learning disabilities
• Frequent upper respiratory infections
• Behavioral disturbance (anxiety, depression, phobias, sleep disturbance, tantrums, irritability, stereotypies, inappropriate speech, withdrawal, hyperactivity)

Features seen in the minority (under 50%)

• Hyperbilirubinemia (newborn jaundice) Very mild
• Persistent feeding difficulties and / or reflux
• Disclocated hips or club feet
• Nystagmus, strabismus (eye movement or focusing problems)
• Autonomic dysfunction (flushing excessive sweating, poor temperature control)
• Seizures
• Constipation, megacolon
• Scoliosis (curvature of the spine)severe
• Heart or kidney defects Murmur and enlarged left ventricle, lots of kidney problems

Occasional or possibly associated features

• Abnormal EEG
• Glucose intolerance (pre-diabetes) there was one episode in Texas that made us wonder if diabetes will be an issue in the future.  Just had another low blood sugar episode in June.
• Thyroid disorders
• Hemihypertrophy (uneven limb length or body mass)
• Neoplasms (tumors and cancers)

While Sotos is not a fatal diagnosis, in Clayton's case, the features of his Sotos such as respiratory difficulties, kidney disease and cancer are what present the life threatening challenges.


Sources for the curious:

• http://sotossyndrome.org/sotos-syndrome
• https://ghr.nlm.nih.gov/condition/sotos-syndrome

And now you know...

I'll come back soon with posts about the things we've had to accept Clayton will never have and as a result we will never have; as well as an update on how the geneticist feels about Clayton's progress.

Medical Monday: CT and Results

We did Clayton's follow-up CT to check on the lesions on his liver last Thursday.  It was an odd experience in and of itself.  Clayton woke up with what appeared to be a migraine, but we went to the hospital anyway, knowing that if it were anything more we would be heading to the right place.  Since he was NPO for his sedation, I couldn't give him tylenol, so my sweet baby was forced to endure.  He spent the entire morning from home to hospital to waiting on CT without even looking at a single piece of technology.  It was completely unlike him.  When we arrived at the hospital, there was a wheelchair outside and since I was having to carry him due to his not feeling well, I had my mom sit in the wheelchair and hold him while I pushed.  He never once got up.  Again, COMPLETELY unlike him.  Usually he never sits still.

The only good thing from this is that we were able to do the CT without sedation.  Which was a huge win, but again not normal for us.  Once it was done, we left the hospital only to get a call to head to the oncology clinic because his blood test showed his blood sugar was urgently low (33).  Luckily, right after the CT, I was able to give him Tylenol which helped perk him up enough that he had already started to eat by the time I got the call.  So by the time we got him to the clinic and checked his blood sugar again, his values were back in the normal range.  So for now, we are just keeping an eye on his blood sugar to see if it is going to become a problem.  Per doctors instructions.

Monday we went back to the oncology clinic to see the doctor and get results.  Clayton was absolutely giddy for this visit.  He actually started clapping when he saw the nurse coming to get us.

Good news is they aren't using the word cancer...Bad news is they aren't ruling it out.  The lesion from his liver we were watching has not grown, but there is now a new lesion.  The doctor said that sometimes they can see something like this as a result of chemo therapy, but that they are of course always worried about a relapse of his neuroblastoma.  They are suspicious enough that they want to further investigate by doing a MIBG in the coming weeks.  So we are waiting on that to be scheduled.

The plan is that after the MIBG the doctors will decide if they want us to resume scanning every three months or every six months depending on what they find.  At this point they aren't saying anything beyond that.  The only speculation I have to offer is that they keep watching these spots and depending on what the tests show and any changes in the lesions they may decide to biopsy at some point.  But I don't think we are there yet unless the MIBG shows something new.

For now, I'm exhausted coming off an anxiety attack.  Sometimes I have to deal with my own feelings and concerns before I can deal with or respond to the concerns of others.  And sometimes I'm harboring too much inside to even deal with questions which is why for my part, I have the blog.  I get that our family particularly wants to know and I'm not in the business of hiding anything from them; but for me, all of this is so much more than just getting answers.  It is my life... it is where I'm going to be tomorrow or what I'm going to be doing, or what hospital I'm going to be staying at, etc.  And sometimes I have to process my own thoughts and anxieties over the unwanted possibilities before I can handle the anxieties of all those who love Clayton.  Otherwise, I find myself in a situation like yesterday, where I'm trying to deal with my concerns and then the concerns of those around me and it just overflows resulting in an anxiety attack.  I think that's why the blog works so well for me.  I can put the information out there without taking in the concerns of anyone else.  It is what works best for me and I need people (cough...parents...cough) to please just go with it for my health.

I'll be back later this week with a secret I've been harboring about Clayton...so stay tuned.

Medical Monday: Dilemas

In an effort to be consistent, I think I will TRY and start Medical Mondays where every Monday I post an update on Clayton's medical status.  I'm hoping giving myself a roadmap for posts will make me more consistent.  That said, we had two medical blows in March when routine kidney procedures and cancer scans both threw us a road bump, and rather than process this out loud, I've just been putting it out of my mind trying to enjoy April and May with no medical schedule or drama to be had.  June however, will put us back in the thick of it again...Deep breath...

In March, we did cancer scans and found that the lesions on Clayton's liver that we had been watching had grown slightly and he also had a spot on one of his lungs.  The good news is that while these results showed in the CT, they did not show in the MIBG which is the test that looks for neuroblastoma specifically.  The doctor felt the spot on his lung was likely just from him having been sick in the previous month.  So we had started spreading our scans out to every 6 months, but now we are moving them back up to every 3 months per the doctors orders.  Yuck.  Most people's question here is when are we checking the lesions on his liver again? June.  Why so long?  If we checked it again to soon and it was growing slowly, we might not be able to see that on the scan; giving us a false outlook.  By waiting three months to scan we are giving the lesions time to see growth...if they are growing slowly or at all.  If they are growing quickly, we would likely see symptoms quickly at which point we would know to scan.  So our wait is almost up.  So far, we have not noticed any symptoms that might be indicative of the lesions growing rapidly.

His kidney is another complicated issue.  During the second half of March we went in to have the stent in his ureter replaced.  We came out with the same stent we went in with.  Unfortunately, the doctor was unable to replace the stent as he had hoped.  He was concerned if he was any more forceful he would potentially perforate the ureter causing bigger problems.  So the doctor opted to wait until he could have an extra set of expert hands to help him.  Those would be the hands of the same doctor that came to assist a little over a year ago from Orlando.  Originally, that doctor would be coming here by the end of May and we would attempt everything all over again.  Then we were told that had been delayed due to a conference and it would now be sometime over the summer.  I have been waiting to hear from them on scheduling that.  To complicated things further, when we attempt to replace the stent again, if they cannot get it, then Clayton will have to get a nephrostomy tube until we can schedule a larger more complicated kidney surgery to try and correct the ongoing obstruction issue (which would need to be done in Orlando).  Wait for it...And I just found out this morning the other doctor is leaving July 1st to go to another hospital.  I don't fully know what this will mean for everything yet.  I do know that if that doctor is going to try and replace the stent before he leaves then he would do so in Orlando.  Meaning we could be headed to Orlando in June for either a minor outpatient procedure or a massive operation...no way to know until they get in there.

SO, that's what's up with us.  How about you?

Texas Travels, Alabama Homesteading

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

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

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

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

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

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

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

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

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

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

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

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

Where We've Been...Where We're Going

While 2011-2013 were some of the toughest years for Clayton, 2013-2015 were the toughest years for me personally.  I found myself reeling from the repercussions of all we had been through.  Something I have openly talked about before.  I have now been on my anti anxiety meds for four months and I am truly feeling much more like myself.  The worries that were consuming my life over the last two years I can once again handle in a normal way.  The physical pain that has consumed my body has eased, but not completely dissipated.  The neurologist expected that though she found the source of some of my pain, that as the anxiety medicine corrected the over utilized chemicals in my brain that most of my pain would subside since the chemical imbalance was responsible for the fact that I could feel so much of the pain I was feeling.  So I am optimistic that life is slowly getting back to normal.

Clayton is doing very well. He turned 7 in November!  Craziest 7 years of my life!!!

We have an upcoming trip to Dallas to see his dentist and orthopedic surgeon.  Over November and December we checked in with his nephrologist, pulmonologist and oncologist and got good reports from everyone.  While we did not do cancer scans, we did lab work and a physical exam and the oncologist said all looks well.  We will do scans in a couple of months.  As far has his kidney goes, we are still stumped.  This time last year we were having weekly checks and being prepped to go on the transplant list and now nothing.  His nephrologist's words at our last visit were "don't kick a skunk".  Translation, this is a blessing, don't question it. He literally said he had no explanation.  So we'll keep doing what we're doing and asking for prayers and hopefully this sweet boy can make it to his teens or beyond before ever needing that transplant.  No way to know...For now we are just greatful.

Pretty sure Clayton had a great Christmas as he was able to further round out his Pixar Cars collection.  His all time favorite thing.  An unexpected thing that happened over the holidays was that he started showing an interest in Star Wars.  I think it all started from Phineas and Ferb's Star Wars episode and the fact that Disney XD has Star Wars Rebels cartoons so he sees the previews.  But he is getting into it for sure.  He even picked out a mini Darth Vader and Luke at Target.  He seems to like Darth Vader best.  And my nephew got a R2-D2 at Christmas that Clayton was really into as well.  This new interests makes me feel like he's growing up and maturing slightly. :((: 

He keeps growing and developing and his list of words is steadily expanding.  It's crazy that for so long I longed to hear him say "mama" and then the way it happened was so gradual that while I noticed, it wasn't the reaction I had always anticipated.  2015 was definitely his year for words though.  He has made huge strides.  He even spent the holidays saying "ho ho ho terry tismas". That's not a typo, that's how he says it. :)

He just started saying "hey" this past week, but has had bye-bye mastered for a while.  He is also starting to string words together making phrases and short sentences.  He doesn't do it all the time, but he does it.  His "go" and "stop" are the freaking cutest thing EVER!

All in all, we are doing pretty well.  We also snuck in a trip to Disney this past October in our camper.  Oh yes, I'm not sure I ever revealed our camper before?  Well last February we used our tax return to get a small 2005 16 ft camper off of Craigslist for $3500.  It needed/needs a little TLC on the exterior like caulking and removing and resealing one window, but there was no major water damage and the inside was in pristine condition from a clean family so we jumped in.  We needed an inexpensive way for our family to get away now and then and have family time.  We have too much stress in our lives not to take breaks from time to time and since hotels, condos, cabins, resorts, etc. aren't in our budget, we had to look for an alternative.  And we found it in our little camper.  I plan on "glamping" it up gradually.  Using fabric I already had, I have already recovered the cushions and my mom sewed new curtains and I'm painting the walls hoping we can one day replace it with beadboard and make a sweet little cottage style camper out of it.  Like everything in our life it's a slow process.  But it's paid for, not a money pit and as long as we take care of it, will be able to provide us with lots of family fun for many years.

Clayton LOVES the camper.  It is definitely HIS camper.  And he loves getting away with us and having us all to himself with no distractions. 

So back to the Disney trip...we had a great time, but admittedly it was a long trip so next time we'll do five days instead of seven.  We were determined not to have a vacation that was a lot of "work" as everyone knows Disney can be, so we had a lot more downtime then we needed.  We used Disney rewards points to pay for our stay and tickets.  Our campsite cost less then $500 for our stay.  Beyond our stay at Disney's Fort Wilderness, we went to the Mickey's Not So Scary Halloween Party and had one day of hopper passes (which we only used at Magic Kingdom).  We realized Magic Kingdom had the most for Clayton and it was just a boat ride away, so we didn't stray from there even though we had planned on going to Animal Kingdom too.  Clayton rode the barnstormer like 5 times, Peter Pan twice, thunder mountain once and seven dwarfs mine train two or three times.  The boy likes him some roller coasters.  We had to try and stick to the milder ones for him though and we worked hard to position him and our arms in a way that protected him back.  Totally worth it though!  We also visited the other resorts to take advantage of their fun offerings like Radiator Springs...Clayton's favorite.

Oh and for the Halloween Party I was Mike Wasowski, George was Scott Squibbles aka Squishy and Clayton was Sully.  And the earmuffs you see in the pics were something I have thought about getting for a while and I took the plunge when I read about another mom using them for her autistic child at Disney.  They worked great and made everything more manageable for Clayton.  He would not take them off! They helped eased his anxieties for sure.

Last, but not least, we've also been chipping away at the house.  In the year and a half since we moved in, the only thing we have done to the inside is brick our fireplace and add cabinets in the laundry room.  We've mostly been working on the exterior.  Over the past year and a half, we've managed to finish caulking the exterior of the house, stained the two porches, covered the back porch, as of Thanksgiving, we finally have the whole exterior of the house painted and to my huge relief as of Christmas we have added the lattice around the bottom of the house between the beams.  In between all of that we fenced our back yard, built a permanent chicken coop and run, got our garden area squared away, made a playground for Clayton and are continually working on landscaping our backyard (most of which is necessary because it is on a slope or at the bottom of a hill and so we have to landscape properly to prevent erosion/washing away, etc.  All of this we are doing on a pay as we go basis though so we can only do so much at a time.  I'm pretty excited that this next week or so we are finally going to start covering our front porch!!!  Thank you Jesus!  That has been a long time coming.

But now comes a new year and the opportunity for well organized changes.  Obviously changes can be made whenever, but I think there is something to feeling like changes are organized by the new year and a clean slate.  So we are definitely making changes.  We have gradually made changes in our lives since Clayton's cancer, but this year will be the year of swift and dramatic changes in our lives.  Things from how we eat to how we live.  So I'm excited for change and moving forward!

Live Free

Clayton's journey has changed me so.  My insides no longer match my outsides, I've aged both in ways people can see and in ways they can't and I have seen horrors of a certain kind to fill multiple lifetimes.  The effect this has had on me was both unforeseen and unexpected.  But it is one of the best things about this journey.

You see, I reached this point of exhaustion where I stopped caring about the wrong things and just wanted to live for the right things.  

I saw this quote from Meryl Streep a while back and saved it ever since.  In many ways it describes how I feel.  I know there are some people that have a hard time grasping this concept, but living this way works for some people...for many people...and its unimaginably freeing... Not only that, living this way is possible for anyone.  It's kind of like using the good china everyday because who the hell knows if they'll have tomorrow and you love that frickin' china or doing your bucket list now because you can and why the hell not.  It's freeing.  It's realizing that that person/people in your life who is always negative and critical...they aren't necessary...even if you love them, you don't have to give them a chance to drag you into their hole.  It's realizing appearances don't matter and a hypocrite is a hypocrite no matter how they disguise themselves.  And generally speaking you are under no obligation to buy into the bullshit our society tries to feed us by the boat load.  It's breaking free of anything and everything necessary to just be and just live all of your days on this beautiful gift of a planet our amazing God has put us on and filtering out all of the crap.  We all have a choice and I choose 110% to filter out all the things/people that stress me out or bring me down and that/who are generally just toxic.  

I have ONE life and it isn't guaranteed to be long.  I choose not to waste it on that which doesn't matter.

Unbelievable...

Seriously unbelievable... I am not grasping some of our latest news.  We did an ultrasound on Clayton in August and I got the results about a week and half ago, but haven't posted because I don't know what to make of the results.  At first I wanted to be sure the new nurse who delivered the news was not somehow confused (because she has been before), so I verified with our veteran urology nurse.  Sure enough, same news and she read me the radiology report.

Somehow and I have no idea how, Clayton's kidney showed no signs of hydronephrosis (fluid on the kidney leading to decreased function) in the most recent ultrasound.  No test EVER in his life has had those results.  Seriously.  Not one single test in his entire life has ever shown his kidney without hydronephrosis.  Some tests show a little more and some a little less, but never has there been NONE.  I have not gotten to speak with the doctor yet to hear from him what this means for everything, but I will soon.  Until then, I'm just in shock.  I don't know what this means for the future of his kidney and to go from the doctors preparing to put him on the kidney transplant list last December to where we are now is CRAZY.  So this is crazy, but good crazy and despite our shock and questions, we are trying to be grateful for these turn of events and hope they are here to stay.  So THANK YOU for all of your prayers for his kidney health, they did something!
We do cancer scans in the next couple weeks and that CT will further confirm or debunk the results of the recent ultrasound.  So I am definitely going to be pacing waiting on those results.  These scans will also be his 3 year post chemo scans.  That's a milestone.
Otherwise things have been good.  We have been working hard on finishing projects around the house.  That's the thing not everyone realizes when I said we were building our house.  We didn't pay someone else to do everything for us we have literally been doing it ourselves.  And we slowed way down on projects after we moved in, but got a little fuel in our tanks recently and have been doing some things.  We have been caulking and painting (the whole house exterior, by hand), covering our back porch and touching up paint inside.  The exterior is finally coming together which I am thrilled about.  I also like keeping busy on projects, because it keeps my anxiety at bay.

My anxiety has been doing better.  It comes and goes, but much less than it use to.  I hope over the coming months on this medication, it comes less and less.  Still liking the medicine though.