March 19, 2015

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!

March 12, 2015


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 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 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...

March 9, 2015

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!

March 1, 2015

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 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.