Medical Monday: Benign Tumors

So this Medical Monday is coming at you late because I've been struggling with hormone issues lately.  Long story short, I have had a severe hormone imbalance since the end of my last pregnancy last spring.  The doctor finally decided to put me on some hormones for about a week to try and balance things out and/or reset my system as they put it.  So I spent last week on hormones.  I can honestly say I have had a glimpse of menopause.  So anyhow, I am getting myself back together now, but I am just exhausted.

So we checked in with Clayton's oncologist last week to get the results from the MIBG we did this month as a follow up to the CT in June.  Based on all of the results, they feel that what they have been seeing on his liver are benign tumors.  They say they sometimes see these on children who have undergone radiation therapy to their abdomen.  At this point these tumors require no treatment and the doctors did not indicate any possibility they would become malignant.  They did say that sometimes these tumors can grow large enough to require resection.  So for now, we will be watching the tumors by moving our scans back up from every six months to every three months.  This is one of those situations where a couple years after his cancer treatment we are starting to see its late side effects.  Unfortunately, the doctors expect we will likely see other late side effects as well.

Still waiting to hear about his rescheduled kidney procedure...

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.

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: Boring

So we have had a pretty quiet week. No news on the medical front as we get ready to repeat some scans on Clayton to check the lesions on his liver.  Just a recap...The last few sets of scans showed a lesion or two on Clayton's liver.  For a few cycles of scans (every 6 months) there was no change in the lesions.  However, on the last set of scans, the lesions showed some growth.  So rather than wait six months, we are rescanning him again this month.  Hopefully, we will find there is nothing to worry about.

Keep us in your prayers!!!

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?

Welcome Change

Clayton's welcoming in fall with a snotty nose this week.  But that isn't deterring us from LOVING this weather.  AMAZING.  Oh how I have missed fall.  This is my favorite time of year.

I'm even more grateful that I am feeling like myself again and can hopefully thoroughly enjoy the fall, football and holiday seasons.  My neurologist, who diagnosed the benign tumor on my back has been helping me with some anxiety meds as well.  The cliff notes of her words are that I've had too much stress for too long and need to give my head a break and a chance to restore its normal chemical balance.  The disruption of those normal chemical levels due to so much stress over the last seven years left me with a chemical imbalance that had me exhibiting so many of the physical signs of stress as well as a heightened sensitivity to pain/discomfort.  Her plan is that I stay on this medication for six months to "retrain" my body to hold on to those chemicals naturally not only restoring the correct chemical balance, but maintaining it.  The mind is an incredibly powerful tool that people underestimate.  Understanding what various types of trauma can do to the mind is very important.  Equally important is understanding that the body works as a whole;  it only takes one thing being "off" to set off a chain reaction (such as physical pain, nausea, weight gain/loss, etc.).  Anyhow, I adore my neurologist and am so glad she is in my corner.
I'm being open about all of this because of all the reasons I've said before, plus multiple people have expressed that they wondered how I had coped with everything.  Well...I haven't.  Not really.  I thought I had, but these last few months I have really realized that I haven't.  I have been in constant survival mode and haven't taken the time to cope.  The closest I came was attempting to cut everything out of my life that I feasibly could that caused me stress.  For so long, I was so proud of myself thinking I had managed everything on my own, never needed medication, wasn't depressed, had a good positive outlook and felt blessed in-spite of our horrible circumstances.  I was so focused and proud of myself for not allowing my situation to depress me that I didn't give much thought to the stress build up and the resulting anxiety.  Actions on my part which led up to the last year and a half and particularly to the last few months of my trying to work things out.
So when people wonder how I've done it, know that I didn't.  It's a mistake I would hope others could learn from because the past year and a half for me was pretty rough personally (honestly you can look at me and tell).  Thankfully building our house served as a distraction or I fear it would have been even worse.  It isn't enough to have a good outlook in spite of the hard times or a hard life; the stress is still there and you have to find a way to deal with it.  I will say this though, I have tremendous love for two ladies I worked with during that first year of Clayton's cancer: Gina and Karen.  Going to work with them everyday and laughing with them did help me cope in those early days.  They kept my head above water then and it was because we laughed.  Because honestly the three of us had one of the crumbiest jobs dealing with grumpy people and yet we laughed every day.  And while I don't miss that job in the slightest, I miss laughing with them.
I think my lack of coping with my stress was one reason I was always looking for projects like grad school or the thrift shop we did for the foundation, etc.  I think I was looking for distractions.  Which just made everything worse because nothing was ever more than a band-aid.  But now I have been on this new medicine for about a month and I am finally feeling like myself again.  No more emotional eating.  No desperate search for my next distraction.  Less physical pain.  Less anxiety.  Just me.  I think even Clayton has noticed.  He is going through a SERIOUS mommy phase now and I think its because he's like "yay, my mommy's back".  I mean serious mommy phase.
I definitely have not figured out all the answers and I don't know that I won't find myself back in a similar situation again, but for now I feel great and I feel like me again.  The trick is going to be handling my stress moving forward because Clayton's battles are on going, which means my stress will be too.
So I wish I had some magic wisdom for mom's like me or any mom for that matter, but I don't.  All I have is DO NOT underestimate what your stress can do to your life.  I did.  And I have paid a high price for it in ways people will never know.  So don't be like me and assume that just because you feel blessed and have a positive outlook that all is well.  You have to find a way to work through your stress.  That might mean different things for different people.  For me, our family has made some changes I'll tell you about in another post, but my stress became so severe that I needed the extra help the medicine had to offer.
So just like the trees this fall, I get to shed some of my leaves, rest for the winter and then begin again...

Summer Break

Back to the baby man...

December still mystifies me.  Everything happened so fast with his kidney going downhill.  But by the grace of God and I'm sure through prayer, we got Clayton's kidney under control.  The whole thing is still kind of crazy to me.  The doctors were all "transplant or major surgery in the next 6 months" until they weren't.  Now they are all "monitor and wait".  So we are.  Thankfully we are finally getting a break from co-pays and hospital fees for a couple months.  We get to monitor his blood pressure from home and do labs locally through the summer.  Then August begins the mad dash again.  We have to do all new tests on his kidney and all new cancer scans.  September will be Texas. October is Nemours Orlando (prep appointment for future kidney stuff there).  November is always a busy month. Last but not least, December will be a stent replacement.  And all of that is if nothing goes wrong.  No respiratory issues or decline in kidney function or reaction to sedation or dental work or unexpected procedure or hospital visit of some kind. That's the schedule barring any speed bumps.  And well our life wouldn't be our life if we didn't have speed bumps.  They just seem to happen.  So we are going to try really hard to enjoy the next couple months of quiet.

Trying to do all the fun stuff with Clayton we can!

And we can't forget the pup...

Something Old, Something New

In the midst of my feeling like crap the last month, I got an awesome gift.  It was meant to be a Christmas gift from my mother, but the lady working on it had some personal circumstances come up so we waited patiently for her to finish as she could.  And of course it came when I felt too cruddy to share.  So now I'm going to share...

Sorry the pictures aren't the best.  I was trying to snap them one handed with Clayton reaching for my phone.  Obviously, it's a quilt!  But not just any quilt.  It's made from Clayton's clothes!  I have known for a long time I wanted to do something like this, so I saved my favorite clothes of his (or the ones that hold the most memories).  The quilt has clothes from the first five years of his life.  I found a lady on etsy and gathered and mailed her the clothes and told her what pattern I liked.  She took it from there.

Quilts tell stories.  Quilting is an art form and one that is not as popular as it once was.  Since Clayton got cancer, I have become a huge fan of quilts.  We have kid sized quilts from quilt guilds across the country from all our hospital stays.  That has been such an awesome token of love that we have been given by a few friends, but mostly from strangers.  

So anyhow, now we have this amazing quilt that tells Clayton's story.  Nearly every picture on this blog is represented through the fabric on this quilt.  There is clothing given to Clayton from our parents and grandparents and a couple hand-me-downs from my sister's kids.  I am just in love with this.  It is Clayton's story with lives of our family, every home we've shared together, every hospital stay, every plane ride or road trip, every traumatic event, every happy place...seriously, it is all represented here and it is the coolest thing I own.  If there is a fire, this is what I'd grab.  

The one thing everyone might recognize are all his button up shirts from his halo traction.  All five or six are in here.  I could go on and on, but I'll stop myself.  It is awesome and something if folks get the chance to do is worth looking into.  I'll post a link later if anyone is interested, but it's from a lady on Etsy.  I believe her store is called QuiltsByVanessa.  She is out of Crawfordville, FL.

This quilt has definitely been my highlight lately.  I'll post an update on Clayton in the next few days :)

Port of Ronald

We made it through yesterday and last night with no complications.  Yesterday morning Clayton had his bone marrows done and his port removed.  And because of his reactions in September and last week, we stayed at the Ronald in Pensacola for the night so that if something came up post-op, we would be near the hospital.  Thankfully, all was well.

Clayton's cancer scans mostly looked good.  Something showed up on one of his lungs.  They aren't sure what it is, but since it did not show up on the MIBG, they don't think it is neuroblastoma.  They think it is just related to the degree to which his lungs are contorted from his scoliosis.  To be sure we will do a CT again in April.  We are going to attempt it without sedation though.  Fingers crossed that works!

As for his port, it had been in for two years, so it had to go.  He is such a hard stick (think IV) though that he may need another one in the future though.  We'll see.

I want to take a minute though to encourage folks to support Ronald McDonald House charities.  No matter where we go for Clayton's treatment, there they are.  They provide families with a safe, comforting and affordable place to stay near the hospital.  There are so many wonderful things about this charity and what they do for families.  I will say though that every house is slightly different.  Some do their thing better than others.  Our favorites so far are RMH New York City and RMH Northwest Florida (Pensacola).  They are exceptional!  So much fun for the kids, always a meal for families and just plain ole awesome!

They had a goodie bag for Clayton when we got there...sweet folks filled it with a few of his favorite things!

03-11-15

6:15 a.m- get out the door to head to Pensacola for Scans

7:15- check Clayton in for MIBG scan and CT with sedation.

8:45- Anesthesiologist running behind, Clayton just put to sleep.

Grab Breakfast...and wait...9...10...11...meanwhile parking my rump in a super stellar hospital chair.

11:45- see them roll a sedated Clayton back to recovery

12:15 p.m- head back to recovery to see Clayton and wake him up.  

My travel buddy for the morning (my mother) notices a shaking coming from my sleeping child periodically.  We also can hear he has some rattling.  Doctors and nurses think he's fine so,

1:00- we're discharged.  Head home.  We both note he is much more rattly/wheezy than normal.

2:00-  get home give him a dose of steroid for the respiratory issues...watch him.

2:40- he feels as though he is starting to get warm, acting like his teeth might be sore, give him Tylenol.  Keep watching him...

3:00-  think his breathing is getting better.  Feed the chicks, collect eggs, start to plan dinner

3:15-  maybe he's not getting better

3:30- grab book bag and hightail it to Sacred Heart.

3:45- explain thing to hemoc/onc nurse on phone.  Debate going to Thomas or trying to get to Sacred Heart.  Clayton is awake and his O2 is in the 90's so we decide Sacred Heart is best.  The problem was not that his stats were dropping, but rather than he was "pulling" excessively. He should not have been working so hard to breath in and out.  His body behaving that way can only keep his stats up so long before his body tires out and function diminishes.

4:00- continue driving like a (safe) crazy eyed mom with my flashers on trying to get my kid to the ER

4:40- arrive at Sacred Heart Pediatric ER.  Immediately get taken to a room, see doctor and do chest x-ray.  Everybody says Clayton sounds like crap, good thing we brought him in.

5:30- George gets there.  Both feeling relieved Clayton is safely where he needs to be if his respiratory problems persist.  Start breathing treatments and they give him more steroids.

6:30- go grab us dinner

7:00-  eat dinner, doctor comes in, says he's undecided about Clayton.  They don't see a reason for the respiratory issues, yet he sounds crappy.  However he has improved slightly since his arrival with more steroids and breathing treatments.  The doctor would admit him, but the peds floor is full so we would essentially be staying in the ER and he doesn't want him catching germs either.  So if we're comfortable, he'll discharge us with the same instructions and meds he would have in the hospital if inpatient and we can come right back if there is a problem.  We talk it over and decide our best bet is to stay nearby.  Begin discharge arrangements.

9:00- As luck would have it the Ronald is full for the night.  So then my Nana graciously puts us up at a nearby hotel.  We check in and I leave George and Clayton so I can run home, grab clothes and let the dog out.

9:30- I get to Seminole and realize in all the crazy earlier, my keys ended up in Clayton's book bag...which is back at the hotel...in Pensacola. (Insert curse word here). Turn around. Head back to hotel.

10:15- after all the crazy and the hiccups,  I'm not headed back to the hotel to then go home and come back again.  So I just send George home for the night.  (Somebody had to go let the dog out and nobody back home has a key...note to self: give someone a key). So George leaves.

12:00 a.m- Clayton pukes.  What?

12:30- more puke...much more

1:30- more puke...Clayton and I now smell like green beans covered in fermented apple juice and all we have are the clothes on our back- the same clothes we wore out the door when we left our house at 6:15 the morning before.  Call George to come back-with clothes for me and the kiddo.

2:30- more puke. George arrives.

3:00 - we finally get to bed...with one eye open of course hoping the puking is over. 

We then get up early, grab breakfast and George drives in to work while Clayton and I stay behind for an appointment with the pulmonologist at 11.  The pulmonologist seems to think that everything was a reaction to some combination of the injections Clayton got, the steroids, the SSKI or the sedation.  Not sure what specifically.  The odd thing is last September after this exact same MIBG scan with all the same components, we got home and within 3 hours Clayton had a fever so high he was nearly unresponsive and beginning to have respiratory issues.  So of course we whisked him off to the hospital then too.  It must be something connected to that test specifically because he has been sedated 2-3 times with the same sedation between September and now with no problems.  Whatever it is it's new and potentially getting worse each time.  Moving forward we will be cautious and I think stay at the Ronald on nights following any sedations (it's right beside Sacred Heart).  Which brings us to more Pensacola appointments this week and another procedure (with sedation) this Wednesday.  The good news is that the scan and it's components that might be causing a problem are now something we only have to do every 6 months...yay!

Anyhow, just another day in the life of Clayton.  While the situation usually isn't the same, these kinds of hiccups seem common with my sweet little bug :(

Not gonna let it keep us down...

Our Time Bombs

We are sitting ducks.  Just waiting.  Waiting for life with Clayton to take a mean turn as we once again enter into battle with either his kidney or his back.  So while life is sweet, waiting bites a big one.  

We will be doing cancer scans over the next two weeks and if they look good, then we will be taking his port out in a couple weeks as well!  These are our first scans in 6 months!  First time we have gone that long.  Prayers please.

Now for his back...

As I mentioned before, we had a plan with a local doctor for his back pre cancer diagnosis.  Then everything got postponed.  Here is a fairly decent look at his back in December following his November cancer diagnosis...

You can see a slight curve, but it's not crazy.  So that was December 2011.  From there it was nonstop cancer stuff until May 2013; which meant we COULD NOT do anything about his back during that time.  Here is another fairly decent look at his back from January 2013...

I know these aren't the best views.  They weren't meant to show the progression of his back, but they do.  Anyway, you can see how the curve got significantly worse.  Got worse, when we couldn't. do. anything.  Then enter the before and after a of his back during his days at TSRHC...

The left pic is before everything (June 2013) and the right is post traction and surgery (September 2013).  So you can see how good things looked right after his surgery.  The problem is it didn't last.  We knew it could get worse above and below the area they modified on his spine, but for it to happen so quickly shocked us all.  For George and I, it felt like our efforts and Clayton's pain that summer, accomplished little to nothing.  It seemed like the surgery was not as successful as we had hoped. BUT X-rays don't lie.  The surgery did it's job.  Unfortunately Clayton's back found a way above and below the surgery to fandangle it's way right back into a similar curve.  So again, here is September 2013...

 Now here is April 2014...

And February 2015...

Not a huge difference from April to February (about 10 degrees), but from post-op to April (just 8 months time), his back got horrifically worse...again.  Dr. Sucato is definitely saddened by this. We knew it would most likely try to curve again either above or below the fused portion as he grew, but we weren't expecting it to happen so quickly.  The answer is a final fusion (fusing the entire spine together-means his torso can't grow).  However, Clayton is too young for that right now which is the issue.  Ideally they would like him to be at least 12 for that surgery, but Dr. Sucato does not feel Clayton will be able to wait that long.  The youngest they would do it would be 8; but only if they felt they absolutely had to.  So, for now, we wait.  We wait for his back to implode so to speak and wreak more havoc on our lives...particularly Clayton's life.  Knowing the future of trying to explain to him what they need to do and the looks of betrayal when he wakes up post-op, breaks my heart.  Once again, prayers please.

About his kidney...Our other time bomb.  I know some folks might be wondering because at Christmas, things seemed so urgent and then nothing.  Well, we are just rolling with what the doctors tell us.  And honestly, from one doctors visit to the next their sense of urgency changes.  Sometimes more, sometimes less.  They don't know what will happen, so neither do we.  We are following Clayton's symptoms and his numbers.  His creatinine that began swiftly rising in December, then came down slightly after adding BP meds, following a low sodium diet and placing a larger ureteral stent.  Then it rose again a little before settling...for now.  This means his kidney function DID decrease overall, but has stopped temporarily.  When it will decrease again, we don't know.  These days his urine is a shade of brownish gold, pink or sweet tea colored more than it's normal.  So there is no doubt, he's sick.  Because as much as the doctors don't know for sure, they do know for sure he will need a transplant.  The problem with kidney issues is that to get the ultimate fix (a new kidney). You have to be REALLY sick.  And he's not sick enough yet to start those procedures.  So really, that's what we are waiting on... For him to get "sick enough".  Sounds horrible huh?  Tell me about it.  And the real kicker?  Both of these time bombs are showing a real possibility of imploding at the same time. Can you see the conundrum?  It would be VERY bad.  Seeing as how the nephrologist said he would have serious reservations about Clayton having any kind of serious surgery other than as related to his kidney, the whole thing is quite scary.  Hello, welcome to hell.  Duration of your stay...TBD. Please pray for us!

As a parent being sidelined to watch your kid get sicker and sicker or more and more disabled is the worst.  So we are in a crappy place right now, but trying to enjoy life all the same.  Things are about to get really bad for Clayton, so we are hoping things can hold off for October so we can take him back to Disney.  Yep, we have a trip planned.  We are going to stay in a camper at Fort Wilderness, attend the Mickey Halloween Party, visit the Give Kids The World Village (the place make a wish kids go- alumni get to come and spend the day there doing whatever) and check out Animal Kingdom again...we will also be paying a visit to his other urologist at Nemours Orlando-to get the ball rolling with a few things there.  I am so stinking excited!  I just want Clayton to be happy and have a blast.  I hope all the bad stuff can wait until after that.  Give my sweet baby one last thrill before his welcome back to the hospital days begin again.  And before those few negative folks out there say anything about us fundraising for his back and kidney (which is coming next) and taking a trip to Disney, let me say this...I don't want to hear it.  Seriously, don't say one word to me about it.  My child goes through hell all the freaking time and he deserves better; the very least we can do as his parents is to try and give him a quick trip to Disney for some fun.  Having to fundraise for Clayton's MASSIVE medical needs does not mean that we should have to sit by watching other folks live, while we bounce from one hospital to the next living in a never ending nightmare.  That is how depression is born.  Hope is found through laughter and happiness and faith that inspite of the bad times God has more out there for you.  Part of that "more", is cherishing those moments with your family and sometimes making the opportunity for those moments. Knowing the little boy Clayton has become and knowing his likely reactions to our upcoming trip are one of the things that keep me going.  It's one of the things that allows me to keep faith that while bad times are ahead, so are good times.  We try and make the most of our everyday, but we need things to look forward to as well, especially knowing there is so much to dread.  If it was you in my shoes with your kid you would do the SAME thing.  Don't pretend you wouldn't.  Not to mention, as with everything we are doing these days, we are approaching our trip in a modest, budget friendly, affordable way...hence staying in a camper at Fort Wilderness.  FYI parents out there if you like Disney and don't have a Disney Visa, get one!  We spent the last three years building up points on ours and have enough to cover the cost of our accomodations and two days of tickets, plus a little spending money.  Big fan of the Disney Visa here!

Which brings me to fundraising...

With his kidney and back coming up, we are trying to figure out what we should be doing as far as fundraising goes.  We are asking doctors and other families about the kidney stuff trying to figure out what we need to be prepared for.  I wish it wasn't something that was necessary at all.  Unfortunately, with the kidney stuff it really will be.  Transplants live in their own little world and it is a tough one in every way including financially.  Anyway, we are trying to figure out what we need to be preparing for because there in no doubt he will have a transplant.  I don't worry so much about his back because of the funding resources for families at TSRHC, but his transplant funding scares me.  Bad.  Much worse than with his cancer.  Which sucks, because fundraising quite honestly, makes me very uncomfortable.  I don't like it.  I don't like needing it, none of it.  I know that soon we'll set up a go fund me page when we have more info from doctors.  Other than that I have one thing up my sleeve.  This one is a surprise that I'll add will make a great Christmas gift.  Should be out in the fall!  More details to come...

In the mean time, please pray for Clayton's back, pray for his kidney and pray for his cancer!

Thank you for your support!

Home Again

Clayton's dental surgery took two hours longer than expected Friday.  That is the worst part.  When you know your child's procedure should be ending and yet you hear nothing.  You have no clue what is going on and you are just waiting in the nothingness.

Well, the nothingness ended and my baby was returned to me with a mouth resembling that of a botched plastic surgery job.

Poor bug.  The dentist ended up working on 21 teeth!  Insane.  So glad we came to TSRHC for this instead of Pensacola.  These people work on the mouth's of special needs kids all day, everyday.  They have the experience to know what's going on and the patience and dedication to fix it properly.  I doubt Pensacola would have been able to do it all at once.  I am also positive we would not have had funds out of pocket to pay for work on 21 teeth and wait for dental insurance to reimburse us as Pensacoka said the case would be.  So thank you God for our wonderful hospital in Dallas and all they do for us!  Thank you for their eagerness to help us and their accomodations and for their Crayola Care Financial Assistance that means we will never pay more than 1% of our total income (if anything) per year.  When the orthopedic surgeon in NYC referred us to Dr. Sucato at TSRHC, I was slightly offended.  I didn't fully understand why he wouldn't take Clayton as a patient.  But I trusted the journey and I am so glad I did.  This hospital is such an all-encompassing kind of blessing.  I think too often people feel like they have to settle when it comes to medical care.  They have to do what's easy or close or what they THINK will be the easiest financial solution.  That is a myth.  Do not sell yourself or your kid or anyone you love short.  The right path might be slightly more difficult, but I can tell you from experience it is worth it.  We deserve top notch medical care and we have the right to seek it out were we see fit.  Don't ever settle when it comes to medical care.  It is way to important.  Don't be scared of the financial aspect either.  We have paid more to Sacred Heart than to either TSRHC or Sloan-Kettering.  Who would have thought, right? (But yes, traveling costs and can be it's own strain)  But we love all three places.  But most importantly, God provides for you to follow the right path if it's meant to be.  That is our experience.  So please don't settle; and be scared of the unknown and unfamiliar if you need to be, but don't let it hold you back.  Have faith in the journey God is sending you on.

Back to Dallas...it started snowing while Clayton was in surgery and didn't stop until nearly nightfall.  And while we were suppose to be discharged Friday afternoon, with the weather the hospital let us stay inpatient an extra night.  Even my mom and nana stayed.  All four of us in one hospital room.  But we survived the night and monitored the weather trying to find just the right time to leave if and when it came.  

We all three agreed our best chance would be to leave Saturday morning after sunrise and the city had salted/sanded the roads overnight and before the icey rain they were predicting late Saturday morning..  Temps were still below freezing, so there was no real melting yet, but we packed up and headed out around 9 a.m. (I drove).  So glad we did because this came in right behind us...

It was slow moving for the first hour as we navigated the icey roads, and then smooth sailing.  We made it home!

The whole trip was a HUGE success.  It is a miracle that we made it there and back and managed to get everything done between the winter storms.  And then to get ALL his dental taken care of in one go is a God send and a HUGE weight off my shoulders.  We are checking off our lists: stent replacement, check; dental, check; check in with Sucato, check; cancer scans and port removal...almost (March).

The dental was crazy though.  We expected them to work on four teeth for sure maybe 6.  My largest guess would have been 10.  We never saw 21 coming.  Poor bug handled it in stride.  He was definitely mad at me when he woke up though.  He also has continued to need Tylenol since the procedure.  He noticeably doesn't feel good when it wears off.  Hopefully, Monday he will get to drink from his kanteen again.  Until then, we have to hydrate him with a syringe by mouth.  And he can only have soft foods until that time too, which means getting slightly creative.  The dentist showed us X-rays and pointed out the sure signs of radiation and chemo damage.  Clayton is even missing a permanent tooth behind a primary that didn't form.  We'll have more dental later no doubt. But for now, we're done.  You can see his swollen lips and a little bit of a stainless cap here...stainless caps are all on molars.

That's all for now...I'll talk about his back later.

So It Begins...

The snow started just as the doctor called to tell me the plan.  It's a doozy...

- 4 composite fillings

- 4 extractions of baby teeth

And...wait for it...

10 stainless steel caps on his molars.

Oh my geez!  The one thing that brings me comfort is that the dentist said from the X-rays and in depth exam under sedation, they can tell definitively that this is damage from chemo and radiation.  There is stunted growth of molars and problems with teeth calcifying properly, etc.  Unfortunately, at his age his teeth were still forming and quite vulnerable when he went through all his toxic treatment.  With all Clayton has going on, it is easy to feel inadequate, so it is comforting to hear this is not our fault and there is nothing we could have done to avoid this.  Wish this wasn't a problem at all though.

Meanwhile, the snow is getting heavier...

My baby should be playing in the snow and catching snowflakes on his tongue, instead his cancer is still haunting him as he lies motionless in an operating room. :(

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...

"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?

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 :)

October 31, 2013

It's Halloween and all the kids are having fun and my poor buddy spent the first half of the day starving and thirsty, then had to be put to sleep to do a test, is currently in recovery and will spend the final hours of the day in a car just trying to get home.  Poor buddy.  Life is not fair!

October 29, 2013

We are doing cancer scans again.  We just sent Clayton back for a combo MRI, CT and bone marrows.  They gave him some versed before he went back and he silently let them wheel him away.  Moments after the large double doors closed though Geoerge and I could hear him screaming .  As a parent, every urge in your body is wanting to bust through the doors and throw everybody off of your child, scoop him up and run...just run.  However, the thing about cancer and special needs is you don't get to be a "normal" parent and you have to suppress so many of your parental/survival instincts and too often be a part of your child's pain or distress.  And for the times that you aren't a physical part of it, you have little choice, but to sit back and tell your emotional self that what you know is happening isn't, or that it will be over soon, or that you have to do this to them.  Anything to try and rationalize the screams and the pain and the fear you know your child is feeling.  

Once all of that passes, I'm secretly relieved when he is asleep.  I know that he is peacefully asleep and I get rare kid free time to just sit and think...before the fear of him waking up and being crazy or having problems recovering from anesthesia sets in...

Winding Down...

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

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

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

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

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