October 31, 2013

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

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...

October 15, 2013

October 15, 2013

The green monster is gone!  We cracked Clayton open like a peanut and said goodbye to the cast!  Poor thing, he was traumatized by us holding him down while the guy sawed the cast off, but then when Clayton realized we were taking the cast off he seemed like he didn't know whether to be mad or shocked.  (I don't usually get action shots during the times I am holding Clayton down, but it seems my mother was there to snap one.)

We made the three day trip and now it's done and over and he has another four months of healing ahead.  The doctor says it takes a good six months post op for everything to heal.  With the cast off, Clayton is still heavy, but he feels so much more petite at the same time.  It's weird...it has been more than four months since I have been able to hug my baby without a halo or a cast in the way.  The only complications we are having are the "pressure sore" from the cast, and Clayton trying to scratch at his healing scar.  Here are some pics, try not to be scared by his back.  It is that red because we had just taken off his cast and bandages so his skin was super irritated.  It looks much better now.  You can see the "pressure sore" from the cast though- notice its to the side of the actual incision.  You can also see the scar from the bone graft near his hip.  Clayton is not competely vertical in the photo, so it makes him look more crooked than he is.  

(I know pictures like this and others I've posted are hard to see, but I don't believe in looking the other way just because something is tough.  There are a lot of kids that go through this horror and they depend on us to help them.  Pretending these crappy situations don't exists doesn't help them.  So I post these things in hopes that people will realize what these kids go through and how badly they need their help.)

Poor thing.  They gave us some good cream to put on it so it will hopefully get better.  I wish I could say that was the end of the back stuff, but the doctor feels confident, we will need to do more in a few years.  Hopefully not until he is 10 or so.  He's ecstatic to be free now!  Figures though, we got home tonight and George is sick.  We didn't even really see him because he felt so horrible he passed out in the guest room at like 7:30 after picking us up from my mom's.  The hour or so we were home he was trying not to touch Clayton and get him sick which stinks since this is the first time in four plus months we can hug Clayton good.  Hopefully he'll get better soon, and hopefully Clayton and I don't get sick.

Here's Dr. Sucato, one of the Fellows, a nurse and a childlife specialist...all with some goodies a local artist sent with my mom..  They're "fear not" angels.

October 6, 2013

October 5, 2013

Here are some old pics and some more recent ones to show everyone what we've been up to and why your not hearing much from me.

Before Texas:

Morning of Halo placement...

After Halo:  so hard to beleive we had to put him through this...the things we have had to ask of this child are so unfair...

Some of our friends:

What we're doing now...
Me getting a taste of Clayton's life when I landed in the ER.

Clayton hanging with his favorite elephant.

Trying to clean out the house to sell and having to replace old carpet stained by chemo vomit and crazy fits of chemo diarrhea...just being honest.

Trying to get the thrift store in order.

Going through months of mail.  Most of which is Clayton mail.  Insurance claims, bills, hospital surveys...lots of phone calls to make.  You would be surprised how often hospitals overlook insurance, bill you and you have to call and fix things.  My credit will probably be ruined forever in part because they send these debts on to the collection agencies, you do not always get a first or second notice of the bill and they don't care if they messed up.  Once it goes against my credit it's there and it doesn't matter if it's their fault or not.  I even had bills from a collection agency saying we owed USACW thousands.  I had never gotten a bill from the hospital about this.  I called the hospital to figure things out only to learn they had switched systems and there had been an error, we did not really owe them anything.  But once it goes against my credit it doesn't matter if it's their fault...bogus.  And this happens regularly.

And trying to clear the property (that's George) so we can get started on the house. (As for anybody with an opinion about this, we are building a 1,000 sq ft home on free property to live more affordably.  We are making a smart financial decision and one that is respectful to all of those who have tried to help us financially.  So if anyone does not understand this and why it it the right choice...well I don't care.  I'm tired and a little grouchy and while incredibly thankful to those that have shown us such an outpouring of support, I am slightly bitter towards those very few that feel qualified to judge our lives and the choices we make.  Maybe if those people walked a mile in my shoes, they would spend less time trying to judge my family and more time bringing judgment against our government and our society for the lack of funding for pediatric cancer.  Now that would be time well spent.  Rant over.)

Anyhow, just a few old pics and a few recents explaining why we are so absent right now.  I'll update when we get Clayton's cast off.

September 18, 2013

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.  

September 11, 2013

September 11, 2013

Sorry for the lack of updates.  Friday night we got to have an overnight pass and since things went great, they discharged us Saturday morning.  Usually they like you to stay local for a day or two, but since we had been inpatient for more than a week post op and Clayton seemed to be doing well, the doctor told us we could go ahead and head home if we liked.  We liked.  So we snuck home Saturday and got in that evening.  Things have been good at home.  Some days Clayton walks a decent amount and other days he doesn't want to walk at all.  He is hard to handle right now since he doesn't walk a lot, can't get up and down on his own with the cast and weighs so much with the cast.  All of this makes it hard for our mothers to handle him on their own.  Plus he can't ride in a regular car seat right now. Things will be like this for the next month, but hopefully will get better when the cast is removed.  George and I can say for sure that if I had not resigned from my job before this trip, I would have had to resign once I got back.  Clayton can't go to school and is a little much for our moms to handle right now, plus he wants me.  I really am the only one that can care for him right now.  Which is awesome that I get to be with him, but a little hard too.  Things are going pretty good though.  More later...

September 3, 2013

September 3, 2013

Lots of ups and downs the past few days.  Sunday was great, Monday mostly sucked and today wasn't so bad.  We seem to have gotten most things under control and are now battling not constipation, but gas.  Poor buddy has lots and lots and lots of gas.  And I know because I saw it on the x-ray today.  We are trying to give him some relief from that.  The really bad news is that the gas seems to be keeping him from wanting to walk and until he is walking and more himself, we definitely can't go home.  I was really hoping maybe Friday we could leave, but that is looking unlikely now.  Maybe by Tuesday...

First time sitting him up:

Trying to get him to stand for first time:

Much better at sitting up now:

Trying to adjust to limited mobility with his cast:

His poor fingers from his blood sugar pricks and his swollen elbow from the infiltrated IV:

He is adjusting though and doing much better with the cast.  The doctors had to "crack him like a peanut" as they put it and that has made the cast much more comfortable for him.

September 2, 2013

September 1, 2013

Looking back, Tuesday night through Thursday night were miserable.
After a rough night Thursday night, Clayton's CO2 and PH levels didn't appear to be getting much better.  In the end everyone agreed we needed to split his cast and give him more room to take deep breaths.  So like Dr. Sucato said, we cracked him like a peanut.  From that point on, his CO2 and PH levels stabilized and later that night began improving.  So all in all things seem to be getting better Friday.  Our biggest problem seemed to become his constipation and keeping his glucose stable.
Saturday things again improved.  His respiratory got better and better and late in the day he finally had some BMs.  He also seemed more comfortable sitting up.  The downfall Saturday was that Clayton's extra IV line came out and later in the day his IV line in use infiltrated.  And because of the potassium in his fluids, his left arm was swollen at his elbow and on his hand from the irritation caused by the potassium.  With his cast, we couldn't access his port, so we had to stick him that night which was a disaster.  I think they (even the anesthesiologist tried) tried to get an IV six or seven times without any luck.  It was miserable to have to do that to Clayton.  Oh yeah, he did take just a couple of steps Saturday.  They were uncomfortable and just a few, but they were steps.
Which brings us to Sunday morning.  Since we couldn't get an IV we had to cut an opening in his cast for his port.  Not what we wanted to wake up and do.  Thankfully after we did, we got to leave him alone and not access his port, but instead give his body a chance to do its thing.  And low and behold it did.  Who would have thought.  The doctor managing all of these things is not Dr. Sucato, but the on staff pediatrician.  He is a numbers man.  And a paranoid man.  What I have learned in all of my time with Clayton's medical, is that sometimes doctors have a hard time letting go of medicine and giving the body a chance to do what God designed it to do.  They use IVs and fluids and drugs as a crutch.  These things are designed to help, not to hinder and that seems to be a fine line many doctors struggle with.  Saturday morning Clayton had two IV lines and an arterial line.  By 1 a.m. Sunday morning, all of these lines had come out on their own...contrary to what the doctor would have liked.  Then they could not get an IV on him.  Because of this, Sunday we had a good reason to argue to not put Clayton on fluids or anything and to instead try and get him to eat and drink properly.  Something he had not been doing since surgery.  We did, and he did and his body responded by finally stabilizing his glucose like we had been hoping it would.  Something the dextrose in his fluids never helped his body to do.  I fully believe that Clayton's little body said enough is enough, if the doctor isn't going to to the dang thing then I will and "spit" those IVs out.  His body knew it was time and didn't care if the doctor believed it or not.  Clayton's body has always done its own thing in a way that has always led us in the right direction.  I know some people squawk at the idea that the human body can do anything right without intervention from modern medicine, but maybe those people have not seen the miraculous things I have seen through Clayton.  Anyway...Just saying.
Sunday turned out to be a good day.  He did great with respiratory and pain management and finally took some good steps walking four to five feet the first time and ten or so feet the second time.  He also ate two hotdogs, one and a half chicken nuggets, a nutter butter cookie and drank two sippie cups of milk.  So we're getting somewhere.  Blood sugars have stayed good all day and he's doing great sitting up.
It has definitely been a very long week though.  And for me and Clayton followed by a very long two and a half months cooped up in this hospital.  And to think we might be out of here on Friday and headed home...first order of business will be to get some mums and pumpkins for my front porch and for the store...because its fall!  My favorite time of year!  Of course, we have a busy schedule ahead.
September- See Dr. Terry to figure out our next move with the stent (we have to do something with it by beginning of November)
October - Check in here with Dr. Sucato and get cast off and later scans in NYC
November- Back to Dallas for another check in with Sucato and at some point stent stuff.

Busy, busy, busy...

August 30, 2013

The Story...

I'm going to try and put the last 48 hours in a nutshell...
After surgery, Clayton appeared to be doing great.  Throughout that first night, he still seemed to be doing well.  Around 8 a.m. Wednesday morning, we noticed his blood pressure drop drastically.  The anesthesiologist over seeing his post-op care at the time said we would watch him, but she was OK with that due to his meds.  He was on a continuous morphine drip and some precidex.  He slept most all day.  As the day went on, he wanted to wake less and less, his blood pressures stayed low and his O2 saturations got worse.  The nurses continued doing tests throughout the morning, but it wasn't until nearly 2 p.m that they tested his blood sugar and found that it was 23.  If your not sure just how low that is, Google it.  It's low.  He was nearly comatose.  They decided to take him off of the morphine and precidex.  So no pain meds.  After major back surgery.  But they wanted to be sure he would wake.  Slowly he did.  Meanwhile, they gave him dextrose through his IV.  The problem with their plan, was once he woke he had no pain meds and because they couldn't decide what pain meds to give him, he was without them for nearly three and a half hours last night.  At 9 p.m. he got a pain med that didn't seem to make any difference, then around 10 p.m. he got some morphine and slept through the night slept on and off.  His respiratory rate improved, but his O2 stats still sucked.  
Thursday, today, his heart rate and respiratory rate were slightly improved, but no luck with his O2.  We monitored his glucose and blood gas every two hours.  Levels showed he was a little acidotic and not holding his blood sugar levels.  After a long day of waiting, we were finally able to make a plan with the doctor (not our orthopedic surgeon, but the doc overseeing his post-op care).  We were finally able to get his blood sugar stable, but his CO2 and PH levels have been up and down.  It's been kind of  a mess...oh and the bad news is that right now, because of respiratory issues we have had to put him on pain management that does not involve sedatives.  Not an easy thing to do.  We are having to try IV Tylenol only.  Rough go of it for everyone right now...

August 29, 2013

August 29, 2013

Bad day yesterday. Bad night. And today is TBD.  Details later...

August 28, 2013

August 28, 2013

Clayton had a good night and this morning he got to graduate from a mask to just blo-bi in his face.  I expect things will get harder after today as we have to start sitting him up and getting him on his feet.  That is the horrible part.  Here are some pics.  You can see his green cast covering his torso complete with his tummy cutout.  He'll have that for 6-8 weeks.  More later...

August 27, 2013

All Done...

We got to talk to the doctor at 5 and he reported things went well.  They followed their plan no problems.  No spinal cord changes during monitoring, minimal blood loss and great respiration.  We finally got to see Clayton around 7:30 this evening.  He has a continuous morphine drip and continuous presidex (sleepy medicine).  George is sleeping with him tonight and I am staying in our normal room down the hall trying to rest up for the coming days.  The next few days will be very difficult.  Especially days 3,4 and 5.  Please pray for Clayton's swift healing during this time. And pray for pee pee ASAP.  Always an issue after surgery.  More tomorrow...Goodnight for now.  Thank you for all of the many many prayers today, please keep them coming.

Still Waiting... 3:45

Still in surgery. Just got an update that things are going good.  It could be another hour to finish surgery and close things up and another hour for the cast.  Did I mention he was coming home in a cast?  Well, he is for 6 weeks.  Since he is prone to tantrums and thrusting his body around, we have to be sure and protect his back.  Anyway it'll be between 5 and 6 before we see the doctor probably.
Waiting sucks...


The doctor got his part started around 9:30.  His part should take roughly six hours.  We got a two hour update at 11:30 and everything is going according to plan.  Which is good I guess.  All I can say finding Dr. Sucato was a blessing.  More waiting...

Getting Started...

They just took him back at 8.  Now I'm left trying to work through the pain of them wheeling him away and the knowledge of the hardships the coming days will hold.

August 26, 2013

Not sure what to say this past week.  Tomorrow and the next few days are really going to suck.  Bad.  Supposively day six post op is the magic day...maybe a few days earlier for some.  Dr. Sucato's actually came by on Sunday to talk with us about the surgery...More on that later.  
They will take him down at 6:50 tomorrow morning and start around 8 or a little after.  No words for now.  Keep everyone updated.

August 22, 2013

August 22, 2013

MIBG and CT look good.  6 days for bone marrow results.  Thank you God!  Now we can breathe a little easier for the next three months while we focus on his back surgery and its healing process.  

August 21, 2013

August 21, 2013

Little man is doing scans now.  I got him a special for after all is said and done.  He wasn't exactly good going into it, but I'd give him the world if I could anyway.  It's hard to find the line between being exhausted by his crazy behavior and understanding why he behaves that way and being sympathetic.  Always feel torn.  Still have 4 hours of tests ahead...  

August 20, 2013

August 20, 2013

So it seems we are doing most of our cancer scans tomorrow.  We will do a MIBG, bone marrows and CT all under the same sedation. Very different than how we normally do it.  Because it will mean he will be sedated for three to four hours, they will be putting a breathing tube in.  George and I are definitely not happy about that, but if that's they way they have to do it, then we feel like we're backed into a corner if we want him screened for cancer.  Had we done this weeks ago as requested things would be much different and much more normal and familiar to us.  Big thanks to the nurse who couldn't get her ducks in a row and almost screwed us out of scans pre surgery all together (it would have been at least 6 weeks post op before we could do scans too).  This makes the second time she has fouled things up and the good doctor has had to swoop in and make things happen.  I'm just a little peeved with her right now and I think she knows it, because she hasn't been by to see us again or called.  I hate we have to do all of this before surgery.  I had hoped this could be a very pleasant-quiet- week.
Please pray the screening tomorrow goes safely...breathing tube and all.  And please pray for NED!

August 19, 2013

Loneliest weekend ever here.  All of our buddies are going home or are in the ICU after surgery.  There were only three of us long timers rolling the halls this weekend.  So glad folks are coming in starting Friday and I won't have to be by myself again!  It has been a full month since Clayton and I had any visitors.  We love each other, but we need a break.  
That aside, we have had some struggles with a couple of Dr. Sucato's staff about Clayton's cancer scans.  Not the good doc himself and not any of the inpatient staff, but a couple of his staff members who a month ago said no scans until after surgery, then last week they changed their tune and said no scans after surgery for a while so they scheduled them for this week, but that posed a respiratory risk with his surgery just a week away.  Then we thought we might be doing just a CT today, but no other scans before surgery.  It was a tough concept, but George and I made peace with that.   Then this morning they weren't ready for the CT, there were issues about contrast and it all turned into a roller coaster of a mess.  So today has been an adventure in trying to sort things out.  As it stands, I think we are actually going to attempt to do all of the tests in one sedation on Wednesday.  Unexpected decision, but the anesthesiologist in charge here said she would be comfortable with it, so here we go...
After writing this I finally got to talk with the good doctor who apologized for the way things were handled and assured me he would have everything taken care of.  He means business, so I know he will.  He is the type of man who calls people's cell phone to get what he wants and because he is the brilliant doc he is, people jump/respond.  There is still one test we won't be doing, but it seems we will be fitting the others in.  Now we just see if everything goes smoothly...
If things go smoothly, and we have good results, hopefully George and I can breath a little easier going into this surgery.

August 17, 2013

August Something 2013

I think I'm losing it.  I am so paranoid about losing Clayton right now.  He acts fine, his oxygen levels are great, his blood pressures are great, he wakes up raring to go, he's happy and laughing and moving all day long, he's eating and drinking and peeing great.  It's me, it's not him.  The idea of no cancer scans freaks me out!  Or at least late cancer scans.  Then this damn surgery.  Holy crap.  I'm scared out of my mind about this surgery.  I just don't know what to expect.  Clayton's surgery is riskier than many of the spinal fusions done here regularly because they are resecting one of Clayton's vertebrate.  Still wrapping my head around what we are about to do.  I wish I could tell him and him understand.  Maybe it would feel less like a betrayal if I could.  Instead all I can think is please forgive me.

Please pray that Clayton stays cancer free and especially that he stays cancer free while we do this surgery and he heals over the next couple of months.  We want him cancer free always, but we need extra prayers while we cannot do our regular scans.  God please protect this sweet boy and watch over him while the doctors can't search for cancer...Please.

August 15, 2013

August 15, 2013

My cancer anxiety is in full swing.  We are one week overdue for scans and my mind is racing.  Dr. Kushner talked with the docs here and said it would be fine to wait until he got his halo off before we did the scans, but as the parent that waiting is not so easy.  There is a certain amount of pain that comes with the waiting and the uncertainty; especially given what we are doing.  It was an enormously tough decision for George and I to make to bring Clayton here to correct his back while he was NED and still at such a great risk of relapse.  The idea that he could relapse a month from now or even now and we have spent some of his healthy days in a hospital has weighed heavily on us.  I knew though that if he ever did relapse he was going to need every respiratory advantage he could get, which meant a straight back.  So here we are...waiting to do scans almost a month late and about to go through what is likely Clayton's toughest surgery yet.  It's funny too, I did not realize how much I was going to miss MSKCC until having to seriously consider doing these scans somewhere else.  I'm fine with doing the CT and MRI here because we're comfortable here, but I hate the idea of taking him to a hospital/oncology team we're not familiar with to do the MIBG and bone marrows.  It's so nice because at MSKCC we know every doctor, most nurses, all of the recovery nurses, the anesthesiologist,  most everyone.  And they know Clayton.  At least we will definitely be seeing them for our next scans...
I feel as though I am surrounded by fear.  On the one side I have cancer and on the other side I have an incredibly risky spinal surgery.  This surgery that is only 12 days away will be Clayton's 15th operation and his 3rd major operation.  Did you catch that? He is not yet 5 and this will be his 15th procedure.  
Skipping around, this week has been a busy week at the hospital.  One of our buddies had his major surgery Tuesday, another got her halo vest off today, another had his major surgery today and another has her major surgery tomorrow.  That's the most action our little group of patients has seen around here amongst themselves.  We've spent all of this time watching others come and go and now our names are being called one by one.  It's scary even when it's not your child because you spend so much time with these children and their families.  And you know that the day will come when you are left waiting for what feels like dusk until dawn for your child to come out of surgery.  It is one of the most anxiety riddled experiences that is then followed by some of the hardest days ever.  They usually let them sleep the first day (which is when you also have to keep a close eye on respiratory after such a long surgery) and day two they make them sit up for an hour.  Day three they have to start walking.  I've been told by another mother that days 2-5 are miserable and day 6 is the magic day.  We'll see...
Oh and to make worries worse I found out my favorite cancer buddy,Justin, who relapsed for the 6th time and was declared NED in early July has just had his 7th relapse confirmed after being NED for just 4 weeks.  His body is weak and the cancer is progressing, so his only option is to go home, do some chemo, pray his cancer will be stable and then maybe he can be eligible for a study or trial somewhere.

Sorry about my skipping around with all of my random ramblings...if you could only see how these things go through my head...

August 13, 2013

August 12, 2013

Happy for now...

August 12, 2013

August 12, 2012

Clayton has continued to start tossing and turning every night around 4 a.m.  This morning around 4 he threw up again too.  I'm not sure what the reason for all of this is.  He has no fevers, blood pressure is great, his input and output are excellent, he doesn't have the runs and during the day he acts perfectly normal and even wakes up smiling.  My best guess is it has something to do with his antibiotic and maybe he needs to be on an antacid while he continues on the antibiotic.  The good news is he gets to shower today!  First time in a few weeks! Washing away that sweet little boy stink.  
It appears we are definitely doing the riskier of the surgeries, the vertebral column resection, in hopes that it will gives us more long term freedom and overall better results. Very nervous, but I know we have the best doctor to do it.  Only a very few doctors in the world are qualified to do this surgery correctly and ours is at the top of the list.  Dr. Sucato is to pediatric orthopedic surgery what Dr. La Quaglia is to pediatric solid mass tumors.  They rock their fields!
Just 15 days until surgery and in less than a month Clayton and I should be home!  After 3 months living in the hospital the idea of going home seems too good to be true.  God willing though we will be home soon...and home safely...and Clayton will be a lot straighter!  We would have a 6 week post op visit back here and we know we have to get scans immediately after his recovery and then, two months after surgery we have to have his stent replaced/removed or something.  So we will still be busy, but we will be home.  Mostly.  We might have to go to Birmingham for scans.  Figure all of that out later- we are not going to NYC for scans though this time.  Maybe for the next set.  If we choose not to do the treatment in Michigan and do natural therapies at home, then we will probably still go to NYC for scans every six months and see if we can do our scans in between closer to home.  NYC does more thorough bone marrow checks, so it is still important to check in with them.  Again, still sorting all of that out.  We have to continue doing three month scans for another two years.

Here is Clayton's model of his spine.  We would be removing one vertebrate- the one in the middle at the apex of the curve.  This surgery could give us an additional 30 degrees of correction!  That would bring his curve down to a 32 or so based off of our last X-rays.  Hopefully even more than that since we haven't had X-rays in a while.  That's 70+ degrees of correction in three months.  Rocks my world!

August 10, 2013

August 10, 2013

Its insane to think that someone so sweet can fill me with so much fear.  We've obviously had a rough week from which we are hopefully recovering.  Clayton's urine has gone from sweet tea colored to a more normal golden.  He has his new halo on and the vomiting spell was hopefully just a one time deal.  The last few nights I have lived and breathed by the numbers monitoring Clayton's oxygen.  He was only hooked up to it because I wanted him to be and was concerned.  Well, the last two night he has been hanging out between 90-94 when he should definitely be above 95.  He was also dropping to 88 from time to time.  My guess was that it had to do with two sedations this week and a lot of time laying down.  So today, I overcame my fear of the walker and put him in his new walker with the hope that his lungs would benefit from his getting up and moving.  One hand on it at all times of course.  This walker rides much smoother BTW.  Hoping for a quiet weekend...

August 9, 2013


5:30 a.m. and Clayton has been having episodes of nausea every 15 minutes or so for the last hour.  Not sure why.  Though it would be unusual for him, I am hoping it simply has something to do with his pain med wearing off.  Just gave him some Zophran; hope that helps. Please pray this little boy starts feeling better soon!

August 8, 2013

August 8, 2013

Clayton got a new halo today.  They used the same pin sites as before.  I hadn't had a chance to update on this, but since Mondays procedure, his urine had looked like sweet tea, but it finally started clearing up today.  We think it was just from old blood/debris in his bladder.  Either way, it is getting clearer and his labs looked good.  While getting his halo today, they also removed his nephrostomy tube.  One less attachment.  
God help me.  My heart just hurts.  I'm constantly scared this child is going to break my heart...and if he doesn't break it he is just going to scare me to death.  Why oh why do SO many things happen to him...

August 7, 2013

I had planned on updating tonight, but Clayton had an accident. I'll explain better later, but he fell, the pins holding the halo in place moved so we took the halo off and now we're waiting to see what the game plan will be in the morning... In the picture, you see the old pin sites and where they are now.  That happened to 7 out of 10 of his pins.  I 100% blame his walker for his fall.  I told orthodics before something was wrong with it and they checked it out, sent it back to me and told me they couldn't find anything wrong...bullshit.  If he somehow were to get another halo, he will not go back in that walker under any circumstances.  Always makes you feel like a failure when you can't prevent something like this.  Seriously, can't this kid catch a break!

August 5, 2013

Good News?

They got the stent in!  Hoping there are no more complications, in which case this buys us three months time before we have to do something about this stent...

12:00 pm

Just now took him back for procedure.  Please pray they can get stent in!

...there really is a lot riding on this.  If they can't get a stent in, then he has to have a nephrostomy tube through his back surgery and then shortly after his back surgery, he will need to have an additional and significant surgery to remove any obstruction in his ureter.  We would do that in Birmingham.  I just keep reminding myself, that other stent had to come out no matter what.  We had to face this.  The only thing we might could have done different was was to replace the old stent in the same procedure.  That was the docs call not mine.  So much is riding on this and this could mean more trauma for our family...waiting for answers sucks...
Please God let them successfully get in a stent and let it function properly.

August 5, 2013

Still waiting to do the procedure.  Things are running behind.

August 4, 2013

August 3, 2013

We are going to try and place a stent in Clayton's ureter Monday morning at 10:30.  The doctors are slightly worried about whether they will be able to since the contrast media did not appear to go down his ureter at all.  Please pray we will be able to place the stent without complications.  I'll update as soon as I know how it goes.