November Update

So my last post was kind of pathetic.  Sorry about that.  I was and still am exhausted.  As soon as we got home from Orlando, everying rolled right into caring for a sick Clayton and a sick George.  Both of whom ended up having to go to the doctor a week ago for antibiotics. 

 And then of course, I got sick too.  George is feeling pretty good now, Clayton still has a little cough and runny nose and since I was the caboose on our snot train, I'm lagging the most, but should be in good enough shape come Thanksgiving that I can taste my food!  Thankfully, I think we are on the good side of things now and I'm trying to recover from this emotionally charged past month.  

Oh and then our washer has been acting up and last night it flooded our laundry room with a half inch of water.  While me and Clayton were home alone...lovely.

And finally, George is compelting his final three weeks of school ever!!!!  He will soon be a college grad and the last few weeks are filled with lots of papers and writing.  Which is a team sport around here because English was not George's favorite subject so I do his proofreading, spellchecking, etc for him.  Everyone pray he makes it through these final days.  We have been through a lot together.  In fact, we have been through many of the kinds of things they say break couples apart.  Well let me just tell you, nothing has come as close to "breaking" us as his school.  I am a nerd.  Books, reading, school, I'm just a proud nerd.  George...not so much.  He wanted his degree, but man it has been a struggle to motivate him some days (for good reason because he works full time too and then of course there is Clayton).  We are just so polar opposite when it comes to learning that he makes a crumby student for me and I make a crappy tutor for him.  It has not been the best combination.  But I'll be dang, he is almost done.  Thank you God.

My mom got to see a picture of Clayton's troubled renal area that requires him to have a stent and she can tell you just how mucked up it is.  She couldn't believe the number of staples that where all around that area causing some of the problems.  The staples and the scar tissue are just messing him up.  The doctor was very pleased with what he was able to do in this recent surgery though.  This will likely be the last stent before his major kidney surgery.  The doctors will probably try and get this stent to last a year to a year and a half before making their next move.  Typically stents don't last that long in the renal system, but Clayton handles them very well.  I was very pleased with our Orlando experience and that makes me feel much better about major surgeries there in the future.  I will say this though...the hospital was only a couple blocks from the Pulse nightclub and driving by it was quite eerie.

We now get to have a quiet holiday provided there are no emergencies.  Our next appointments will be making a trip back to Dallas.  That will be in the new year.  So we can breathe for a little bit and soak in the holiday merriment.  Clayton is diving into the winter wonderland spirit everywhere you look.  I saw Santa in his sleigh being pulled across my counter by two beagle beanie babies just last night.  And don't get me started on Frosty.

Now that my sense of smell and taste is returning as I'm starting to get better from my cold, I've dived into cooking again.  I love cooking, but since my last pregnancy, it has not been the same for me for some reason.  This is the first time I feel like me stepping back into the kitchen.  Yesterday, I made some homemade fresh mozzerella, tomato and basil pizzas.  And today, I made homemade artisan bread and a tomato and onion pie for lunch and homemade spaghetti for dinner.  I love to be in the kitchen cooking, but I truly do have to be in the right mindset.  

Feeling good again.

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).

Monday Medical: Pyloplasty #2

This is the update I have been waiting for myself... We have dates and a plan.  And even though I have been trying to prepare my folks and George for the risky business involved in this surgery, it still hit me like a ton of bricks when the nurse finally confirmed it.  "It" being a stent exchange with possibility of an open pyloplasty.  So let's take this step-by-step:

- Clayton is tentatively having a stent exchange in November.

- Clayton's stent exchange is for the stent in his ureter that is there to drain his kidney because it can no longer adequately do so (if at all) on its own.  

- We have been doing these stent exchanges for 3 years, but they have become more problematic due to scar tissue and such from his original pyloplasty and particularly from his tumor resection.

- The increased risk with these stent exchanges now prevents us from doing them locally.  The doctor tried and was unsuccessful in March.  Our local urologist referred us to a urologist in Orlando that has previously worked with our local urologist on cases including Clayton's.

- When Clayton went into acute renal failure in Texas it was due to this ureter issue and the urologist there suggested then he may need another pyloplasty.   

- The urologist here bounced around various alternatives and so we have been waiting on the urologist in Orlando to confirm surgery date and his plan.

Which brings us up to speed.  So we will go to Orlando in November and the doctors will attempt a stent exchange, but are preparing to do an open pyloplasty.  A pyloplasty is the same surgery Clayton had as an infant.  It did not go so well the first time so we are hoping for a better outcome this time.  The fact is, if they get a stent exchange successfully and don't do the plyoplasty now, he will still need it later.  The stent exchanges are only a temporary solution.  If you remember, a year and a half ago when Clayton's kidney function began to decline, the doctors were preparing us then for something major.  Well they bought us a little more time and even if they manage to do so again come November, the amount of time they can buy us is limited.  I honestly don't know if I want to get it over with or want to do it a little later on.  I just don't know.  Clayton's original pyloplasty was suppose to have about a week of recovery.  He was in the NICU for two months.  Thankfully, George and I have grown and learned a lot and now clearly see mistakes that were made then and know how to be more aware of issues now and advocate for Clayton as he deserves.  Ultimately though, it is a different time, we are different people, different doctors and different hospital.  George and I are not turning over our child to a surgeon with blind trust.  Rather we will be turning him over to a surgeon whom I have researched, have references for, met, spoken with and ultimately who we chose.  So I feel like our prior experience with this particular surgery serves as a caution and even a tool, but not a reason to be fearful.  I think any fear just comes from the fact that we are finally entering the territory of major kidney surgeries that we have known was coming and what this might mean for our future.

I will let everyone know the surgery date when it is here in November.  So for now if everyone will please pray that whatever route the doctors take come November, that they are able to help Clayton and his sweet kidney in a smooth, uncomplicated way so that he can recover quickly and get home for Christmas.

I also have a second prayer request.  My sweet PawPaw went in the hospital at the end of last week.  The family is going to try and bring him home on hospice once everything is arranged.  This amazing man's life is coming to a close though and I ask that you please pray for peace for his heart and soul during this time.  And please pray for my sweet grandmother too.  They have been married for 62 years.  I can't imagine the pain she is feeling.

I LOVE this picture.  Clayton took it 1 year ago on one of our playdates at Granny and PawPaw's.

Took this picture about a week and a half ago.

Medical Monday: Doctors and Disney

Back to Disney and back to doctors come November.  I am still waiting on some specific dates, but I have now been told we will do things a specific week in November.  So we are going to head down and camp at Fort Wilderness, go to a Mickey Holiday Party one night and then do the doctor thing.  That way we can add a little fun in there for Clayton.

As for what we are doing with the doctor?  I hope we are doing a simple stent replacement.  However, we are having to go to Orlando for this because the local urologist could not do the stent exchange without risking complications that our local hospitals can't handle.  So while we hope it is a simple exchange that goes smoothly, we are very aware that we are going to Orlando for this because of the increased risk of complications.  It will definitely be a nerve-racking day because we won't know what is to come until Clayton is back there and sedated and the doctor has a chance to look at things.

Meanwhile, this month we will be doing cancer tests.  So we have a number of things coming up the next couple months.  Hopefully we can wrap things up before December and have a quiet holiday month.

Oh as for why we are staying at Fort Wilderness?  At $60/night for a campsite it is much much less expensive than even a roadside motel...So why not?  Give Clayton a little magic in the midst of the not so fun stuff.  We don't have plans to visit the parks for anything other than the holiday party though.

And now I have to go call Texas to schedule ortho visit for beginning of 2017...

And as a special gift to all here is a random picture of an angel dressed up like goofy getting ready for Halloween!  I say gift because this sweet child's persisting innocence is the coolest, sweetest gift of all and I wish we could share it with everyone more...

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: Step in The Right Direction

Finally, we have heard something more from the doctor about what we are going to do about the urology dilemma.  To recap...We have a urologist at our local Nemours, that follows Clayton, but does not have the facilities to do any major medical with Clayton which is why we have been getting to know one of the urologists from Nemours Orlando, Dr. Swana.  Our local urologist has been able to handle things thus far, but on Clayton's kidney procedure in March ran into a problem and felt it was necessary to have the assist of Orlando Nemours' Dr. Swana (whom we've previously met and really like).  We were waiting to hear when they could coordinate to do the procedure when we learned Dr. Swana was leaving Nemours Orlando.  We started to get slightly concerned over our options and didn't seem to be able to get any answers...Until the end of last week.

What we now know, is that Dr. Swana is leaving Nemours Orlando, but is only moving to one of the other Orlando hospitals.

The bad news:

• It will be outside the Nemours system which makes things slightly more complicated.  

The good news:

• Dr. Swana's new facility is one that has EVERYTHING necessary for Clayton's very complicated urology needs.  Because when the day comes that he needs a transplant, Nemours Orlando cannot do it in house and would have had to send him to this other facility for the procedure anyhow.  So we are kind of just cutting out the middle man now and keeping the good doctor.
• It means we get to keep things in Orlando, which we found because of Dr. Swana, but we like because it is a reasonable (drivable) distance from home.
• Because Dr. Swana is staying within a reasonable distance, we can stay on with him and not have to worry about finding another major medical urologist.

So for now the doctors are trying to work out the politics of working together on Clayton's case while being at two different hospitals.  The great thing is that our local urologist is not concerned with what is easy for Nemours and is concerned instead with what is best for Clayton.  He feels Dr. Swana is best for Clayton and Dr. Swana is still eager to care for Clayton, so the two doctors are trying to sort things out.  Either Dr. Swana will come to Pensacola and we will attempt the procedure there with Dr. Swana and our local urologist; or if Nemours paper pushers make a stink of that since Dr. Swana just left them, then our local urologist said he would just send us to Dr. Swana's new facility in Orlando and there Dr. Swana and his fellow urologist (who also left Nemours) can attempt the procedure.  Which isn't a bad thing because our local urologist has been concerned about something going wrong with Clayton's procedure and him not being in a facility equipped to handle the repercussions of that complication.

So now we again wait...but at least this time we have a better idea of what to expect.

Medical Monday: No News

So we have not heard any updates to our recent urology dilemma.  I spoke with the urology nurse multiple times last week, but she had no news for me and like me, she was waiting to see what the doctors decided...still waiting.  The way I see it, the scenarios are this:

(A) They rush us to Orlando to do the procedure we attempted in March before the Orlando doctor leaves July 1st.

(B) They rush us to Orlando to do a larger more complicated surgery to correct the problem, which would call for a longer stay. (if they attempt option A and are unsuccessful they had already said they would then go to option B anyway)

(C) They decide whoever the replacement doctor will be in Orlando will be able to sufficiently handle Clayton's case and they have us wait on the replacement doctor.

(D) Maybe they decide a urologist from another neighboring Nemours can assist with Clayton's case.

All this is speculation.  And regardless, with Dr. Swana leaving, we have to meet and greet with another doctor to decide if we like them.  Which sucks, because we already got aquatinted with Dr. Swana and I really liked him.  After so many years, I've developed a sixth sense as to whether or not a doctor will fit us very well.
The other problem is that the longer Clayton's stent stays in, the more at risk he is for complications.

Anyway, still waiting...

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?

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.

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 :)

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!

Freedom!

So the bug as been doing good since his procedure Friday.  Sunday I asked him to let me take a picture and this is what he did...

I just fell more in love with my kid.  Pure awesomeness!  You have to understand that him posing and/or smiling for pictures is a new thing.  Like as in the past couple of weeks new.  I love it!  Just wish that lighting was better.

Anyhow he was SO good with his catheter all weekend.  And since the medical supply folks updated their catheter "stay-in-place" system it worked awesome!  Usually, we have to retape a bazillion times over the duration of his catheters, but not this time!  Anyhow I took it out Monday morning at home which makes everything easier.  After, Clayton was clearly enjoying his return to freedom.  No. More. Tubes.

I'm not sure if I mentioned this in everything before, but last Monday we found his creatinine was rising again.  With that in mind, the doctors used a stent with a larger diameter this time; hoping to allow for better drainage.  So we will see if that makes any difference.  I also mentioned the best case scenario before...I should add that that only works if Clayton continues to be free of things like UTIs and kidney stones and other negative side effects from having a stent in place.  If he starts having any issues, then they have to make a new plan altogether.  So as usual, we just wait and see.

Post-op Stent Exchange

Exchange successful!  They got in a new bigger stent hoping an increase in drainage could result in increased kidney function.  The doctor did say they had the same degree of difficulty as last time though.  But they got it!  So no nephrostomy tube. However, Clayton is going home with a catheter for a few days.  Just like last time they irritate his poor man parts so much doing this that it swells to the point he can't pee without a catheter.  Nothing we can really do to avoid that.  Thankfully, this time they sent us home with a catheter.  Last time we had to go back to ER the next day and traumatize him with getting a catheter while awake...through his already severely irritated man parts.  So we're doing better than last time.  Should make for a super fun weekend of catheter watching.

As for our future...as frustrating as it is for folks to hear, we just don't know.  Per the doctors today, the best case scenario would involve continuing to do stent exchanges once or twice a year for another two years until he is 5 years with no evidence of disease (cancer) and then deciding if his kidney is in good enough condition for a reconstructive surgery to his ureter.  They would only do that if they felt such a major surgery would buy him a few more years with his kidney.  If they did not feel they could get that kind of reward from that type of major surgery, they would not do it and instead make do until it was time for transplant.  Worst case scenario would be that he needs a transplant within the next two years.  The doctors have zero doubt he WILL need a transplant.  They just don't know if it will be in three months, three years or thirteen years.  In December, his kidney started acting up to the point they thought it might be within the next six months.  Then his kidney responded beautifully to the changes we made and everyone started breathing easier.  Just waiting, never knowing what it was going to do. Then, this past Monday, his creatinine had risen again, but his blood pressure still looked good.  So the doctors are keeping an eye on things and we continue to wait.  They don't know what will happen or when and neither do we.  What happens next is entirely up to Clayton's kidney.  It will fail as fast or slow as it sees fit and we are just along for the ride.

So as frustrating as it might be for folks to hear, "I don't know", just imagine what it's like to be me or George.  We are just stuck waiting on our kiddo's body to fail him.  One of the most miserable and mentally exhausting things ever.

All of that said, I get a really GREAT feeling about the Orlando doctor.  Some people you meet and you get very distinctive feelings one way or the other about them.  I was really struck by how much I liked this urologist.  He is very different from our urologist here.  Our urologist here is a self proclaimed worry-wart.  Our new Orlando urologist is very calm, cool and collected to say the least.  And while I really like them both, I get the sense that the Orlando urologist will really give us a better sense of peace of mind with where we are and where we are going. I know first hand worry-warts tend to think all over the place, so I think this new urologist is the piece of the puzzle we didn't know we needed. 

Now we just wait and see what Clayton's kidney decides to do.  Meanwhile George and I will do more research on transplant centers to be sure we are making the right choice.  And when it seems a transplant is on the horizon, we will see if I'm a match first and foremost and then go from there.

Anyhow, Clayton is doing ok.  We are home now and while he is VERY put off by the catheter, we are home and he is ok.  Trying not to move too much.  Poor bug keeps pointing to the medical drawer trying to tell me to take it out!  That's his way of telling me to get scissors or tape or whatever I need to fix his problem.  :)

Pre-op Stent Exchange

The little bug went back around 8:45.  Smooth morning.  We got to meet our Orlando doctor and now we are waiting...

Still don't know if stent exchange will be successful or if we will be staying the night.  Could go home with catheter or could go home with nephrostomy tube.  Unfortunately, I get to be surprised.

Argghhh

Checked in with doctor Monday and labs revealed that Clayton's creatinine is again rising.  However, his blood pressure is looking good this time.  That's a good sign.  We are moving forward with procedure on Friday during which the urologist here from Nemours Orlando will make his own assessment of Clayton's kidney health and hopefully help us figure out where we go from here and maybe when.  Very anxious right now awaiting everything.  Prayers please.

Macy loves her Clayton!

Waiting...

    BWe are waiting on the kidney doctors to decide for sure what our next moves are.  Since Christmas time, Clayton's kidney has responded so well to our changes that the doctors have backed off of doing a nephrostomy tube for now and are instead going to try and go forward with the stent replacement at the end of the month as we had previously planned.  As it is right now, the urologist from Nemours Orlando (that would do transplant) will be coming in at the end of the month and will take part in the stent replacement to get a feel for Clayton's kidney and to help be a part of the decision making process with our doctors here.  Hopefully more answers will come after that.

We were suppose to have been in Dallas last week, but since Clayton was getting over flu, that trip has been delayed.  No anesthesia so soon after flu.  It's for a check up with ortho and dental surgery.

Otherwise Clayton is over flu and thank God did not have it too bad.  Now we are trying to stay healthy for procedure at end of month.  We can't reschedule that with visit from Nemours Orlando doctor.  So if your sick or think your sick for the sake of my sanity please keep your distance these next few weeks...I mean that with lots of love.

Meanwhile, Clayton has been spunky as ever!  Sweet bug!

My neighbors have been putting out this snowman since I was a kid.  And Clayton loves Frosty!

LOVING his new rocks.  We go out there many times every day!