June 29, 2013

June 29, 2013

When we first started going to NYC, we met two kids those first couple of weeks.  Justin who is now on his 6th relapse and Abigail who at the time was in remission and going through her 3f8 treatments, but who later relapsed.  Both of their mothers have been huge inspirations to me.  An important difference to be aware of here is that there are typically two different ways neuroblastoma invades the body; It can present as either boney disease or it can present as masses.  Kids like Justin have extensive boney disease. Boney disease can be very stubborn to get rid of and often those kids are the ones you see fighting this disease for five, six and seven years.  Then there are those children like Abigail.  Their disease never presents as being extensively boney.  Rather they have masses.  For some, their masses never respond to treatment and other times they respond well.  Of those that respond well, many relapse while a few go on to be free of disease.  These kids often lose their battles to neuroblastoma within three years or so because when the cancer relapses, the cancer is often more aggressive in the kids in a shorter amount of time.  Where am I headed with this?
Many people wonder, why are they still doing treatment?  Why are they going to MSKCC still? Why are they talking about going to Michigan for another treatment?  Isn't he free of disease?  Are they wasting time and money? I'm just not sure I get why they still need to do this stuff?  Let me paint a picture...
Abigail was diagnosed about 10 months before Clayton.  We are due for scans the first week of August.  That will also be the point at which we are one year NED.  It was at roughly this same time in Abigail's time line that she relapsed.  Her relapse took place this past Christmas.  Since then, her family has traveled from their home in Arizona to Michigan to Mexico and even California trying to treat the relapse.  The relapse has proven to be aggressive as neuroblastoma relapses often do.  Keep in mind, relapses can happen at any time.  The girl we met in January that was from Louisiana, had been NED for three years when she relapsed.  There is no specific pattern as to when a relapse might occur.  But it is because relapses can be so aggressive and because they are so likely to occur, that families continue to get maintenance therapy even when a child is free of disease as is recommended by neuroblastoma specialists.  What do I mean by aggressive?
Abigail's chemotherapy post relapse kept her cancer stable at best for a few months.  As these last few months have gone by, her cancer began to be less and less stable.  Both her chemotherapy and her alternative treatments seemed to be failing in the fight against neuroblastoma.  A one point this past month, her parents didn't even bother taking the time to do scans when they already new what they were going to show.  The cancer had grown.  Instead they wanted to do treatment without wasting any time for scans.  They tried.  Abigail's parents held onto their faith, but knew things had been getting worse.  I think it was Tuesday June 18, that Abigail's mom felt a lump on the right side of her neck.  She had the doctor check it out and they were going to watch it.  Thursday morning there were three more lumps beside the first.  Thursday night there was another lump on the other side of her neck.  Just that quick.  This is a nasty disease.  Unfortunately, what is happening with Abigail is all too common for kids diagnosed with neuroblastoma.  Her parents finally got to do a scan last week and this is what it showed:

"Abigail's scans on Monday were bad. The cancer is in her neck, upper lungs, and ALL over the mediastinum (the mass of tissues and organs separating the two pleural sacs, between the sternum in front and the vertebral column behind, containing the heart and its large vessels, trachea, esophagus, thymus, lymph nodes, and other structures and tissues;). The cancer is around her aorta and extends down to her diaphragm. She has "multiple metastatic lesions" in her liver. Her pancreas is hard to identify because it is atrophied. She has tumor on top of her kidney, on top of her iliac bone, and entangled in many ribs spreading out from the mass near her spine. It is destroying the bones where the femor connects in the hip. We also know from her bone scan in May that it is inside many of her bones, including her entire spine.

This is one way cancer kills....slowly destroying her little body parts. This is why cancer is painful."

Seven months ago, Abigail was running around a neuroblastoma warrior, with a head full of hair and disease free.  Tonight, Abigail is no doubt in her mothers arms as her mother rocks her back and forth.  Her brothers and sister are coping with what their parents have told them is coming and her parents are just trying to cater to Abigail's every wish to keep her happy.  Sadly, as is the case in these situations, between the pain and the narcotics, their little girl is already gone in many ways.  There is too much pain for her not to be sedated, yet the narcotics cause her to either be asleep or on the rare occasions she is awake, she is easily irritated.  Smiles are rarely seen, if ever.  Her parents are left to hold her and love her here on earth for days...maybe weeks or at best a couple of months.

So what are you doing tonight?  Where are your children?  Because in Mesa, Arizona, my friend is rocking her dying child and trying to cherish every moment she has left.  Because Abigail is dying and there is nothing on this earth that can change that or fix it.  She is dying and her family is left to watch the painful process knowing there is NOTHING they can do to change that.  

An innocent, just-turned-four little girl is dying and what the hell are we doing about it?  What are we doing to prevent it from happening again and again?  I'm embarrassed that I ever even blogged about the idea of being a politician.  Politicians aren't helping us fight for childhood cancer like they should.  All the politicians I see big and small only seem to be concerned with their bottom line.  What happened to the greater good?  What happened to working for the people?  These politicians who neglect to fight for childhood cancer, who neglect to make it a more important issue aren't any better than pathetic doctors who practice medicine with their egos rather than their hearts and their minds.  We need people in mass numbers, we need politicians willing to stand up and we need those doctors like our beloved team in NYC to make a difference.  These children do nothing...NOTHING...and yet they are burdened with this horrible disease and often times the slow painful death that accompanies it.  Why are people so damn OK with that they they don't do more or fight harder?  I'm ashamed to say that before it was my child, I was too naive to know better.  I wish there weren't so many people making the same mistake I was making.  At the very least, those reading this blog are better off than I use to be because they are at least learning if nothing else.  I was just oblivious.

I feel like I have evolved more than normal this past year.  I have learned from our experiences with cancer, everyday experiences with a child with special needs, from those who have so graciously helped to support us in our battles, from those that love us and even from those that don't love us.  I have gone from considering the idea of wanting to be a politician to being so ashamed of our politicians and our government that I wish George, Clayton and I could pick up and go live one of those "off the grid" life styles in Alaska or somewhere (for obvious reasons we can't).  It makes me sick thinking about the fact that as a whole, we are destroying our world and not fighting harder to save our children.  We are stuffing our bodies with genetically modified foods and poisoning not just ourselves, but the environment those genetically modified crops are grown in.  Did you know they have discovered a direct link between the loss of you thousands of honey bee colonies and genetically modified crops and the pesticides used on them?  European countries like France have already banned many of the chemicals and yet we keep on using them?  They call this vanishing of the bees, colony collapse disorder...how long before we have our own colony collapse disorder within the human population?  Or are we already?  How many of your children have severe allergies, weak immune systems or other health problems?  How many of us or our children suffer from headaches regularly?  How many of our parents have heart disease? High blood pressure? High cholesterol? Diabetes?  Obesity? How many of us know somebody who has suffered from cancer?  Scientists discovered that the genetically modified crops and their pesticides were causing a reaction in the nervous systems of bees.  The nervous system... Neuroblastoma is the most common solid mass childhood cancer and it is a cancer of the nervous system.  We don't know that there is a link between the two, but we don't know that there isn't...But links have been proven in the cases of radiation leaks causing cancers, chemical plants and high cancer rates in the surrounding communities.  These same links exist between these chemical plants and radiation leaks and a slew of birth defects.  So we do know that the chemicals we use today are harmful to us, yet our government isn't regulating it better and we aren't forcing them to do so.  We aren't forcing them to find specific links.  We aren't forcing them to protect us.  In many cases, we aren't even protecting ourselves.

Why are we doing this to ourselves?  To our children? To our environment?  Why aren't we forcing our government to take action to prevent further damage and start repairing the existing damage?  I cannot believe an innocent child would be sent here to suffer and die for no reason.  These children are sent here as lessons for us.  They are sent here to teach us patience, to teach us to better care for those things we love, to teach us to take care of the world around us and to take care of ourselves.  All of these things are gifts; our children, our bodies, our lives, our planet and we are slowly and painfully destroying all of these things and too many of us aren't thinking twice about it.  Why?  

Why do children like Abigail have to continue to die while the majority of us fail to learn the lessons they are put here to teach us?  So many children have genetic mutations causing severe problems...how many of those problems are caused by the toxins our society is producing and surrounding itself with every day?  Are we unknowingly making our children sick?  There is an awful lot of compelling evidence that says yes...we are.   This begs the question, what are we going to do about it?  

I know I spend some time on my soapbox, but I am trying to learn whatever lessons these children are here to teach us and I hope that those that read this blog learn something too.  Change has to start somewhere.

"Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not." - The Lorax

June 27, 2013

June 26, 2013

I really do love this place.  I am constantly amazed by the number of volunteers here on a daily basis and the ways in which this place clearly seems to manage their finances so well.  It is not by any means a modern or up to date facility, but they manage to update the things that are most important and care for those they can't update.  It is without a doubt the cleanest hospital I have ever been in.  Clayton and I even go barefoot in our room...and for those that know me, you know I'm a germ freak and would not dare do that unless I was confident it was clean!  
They also have activities for the kids all the time.  The other day, some of the members of the National Volleyball team came and played volleyball with the kids upstairs and one of them was an Olympic gold medalist.  And yesterday they had toys all over the clinic for the kids to pick something out and they went around to the rooms with a cart of quilts a quit guild had made for the kids.  I have to say though, MSKCC was good about volunteers too.  One of their weekly things was to have volunteers play BINGO with the kids in the playroom and bring walkie talkies to the rooms for the kids that had to stay in their rooms.  Both hospitals are great.  And whatever MSKCC lacks, this place has.  Both hospitals really should be inspirations for what a hospital should be.  Sure, they both make mistakes from time to time, but they have world class doctors and overall, they are amazing places.  
As much as I am excited about the neuroblastoma treatment we hope to do in Michigan, I am sad about not seeing our doctors in NYC again soon.  Unless Clayton relapses, we might not see them again for years because if we do this treatment in Michigan, we will do our scans with them or one of their affiliate hospitals.  Anyway, that's all of my random ramblings.
I was talking with another mom here today and her child talks to her and based off of what she was saying and my suspicions, I think the number one reason Clayton has been resistant to his traction more this past week is because he is just tired of it rather than sore because of it.  I'm sure he is a little sore, but I don't think that is the reason for his behavior.  We are seeing such a difference though.  There is still a hump when he is standing, but it does not stick out when he is standing the way it use to.  You see a dramatic difference now when holding him too.  You use to see his hump the worst when holding him...it is SOOOO much better now!  And we thought he ate good before, but now he eats like crazy!  All the time!  Seeing lots of changes.  And they just got more aggressive with his traction too; 30lbs during the day and 18 at night...

June 25, 2013

June 25, 2013

I'm not sure if pathetic is the right word, but it feels a little "something" that we have become so accustomed to hospital living.  I must say as far as hospital living goes, this isn't too bad.  The food is mostly good and the hospital itself is by far my favorite of the ones we have been too.  My mom and grandmother are here now, but leaving tomorrow so it will once again be me and Clayton against the scoliosis.  Of which I hope today is not a sign of things to come.  He had a very restless day and was not a fan of his traction.  I assume he is either sore or bored of continuing to do traction...or both.  If only he could tell me.  It is inevitable that he will of course get sore even though the process also feels good to him.  His body is changing so much so fast.
We were suppose to see the Urologist from Texas Children's about his stent today, but frustrating things happen and cause long stories that I won't bother telling other then to say we didn't get to see him, but should soon.  Trying to make a plan for this stent has been a bit of a joke...starting in NYC.
We're already two weeks in...only two more months to go! And yes we'll probably be here the whole time because even if he is ready for surgery before August 27th, they said the surgery schedule is packed.
Long day, more tomorrow...still working on those videos, this internet is pesky.


The internet is bad here so I'm having problems with the videos. Hopefully I'll have them up today!

June 24, 2013

June 24, 2013

We had a couple of rough days Wednesday and Thursday.  I started to think the honeymoon was over so to speak and was really beginning to dread the rest of this process. Thankfully Friday Clayton started to act like his happy self again and by Saturday he was back to normal for sure.  I'm not sure if he was rebelling because my mom came so maybe he thought I was going to leave or he if was getting sore.  I have no idea.  Just glad he's back to normal! 
You have to watch your toes when he's in his walker, he just takes off and will plow you down if your not careful.  He has started spinning like crazy too.  I am going to try and upload some videos today, because my words can't do him justice.  It is amazing the things he does from his halo and the fact that it doesn't hurt is mind blowing!
Videos soon!

June 20, 2013

June 19, 2013...one week x-rays!

We did our one week X-rays today!  Let me start by saying when I gave measurements on Clayton's back before of a rough 92 degree kyphosis curve and a 48 degree scoliosis curve, those were numbers from February.  George and I have known it has been getting worse since then.  Last Mondays X-rays measured a 101 degree kyphosis and a 100 degree scoliosis curves.   I knew the scoliosis had gotten much worse over the past few months, but that was even more than I realized.   BUT, today the kyphosis measured 64 degrees and the scoliosis measured 87 degrees.  That's good stuff!  Here are the before and progress pics:

Top pic is the kyphosis curve Left is 6-19-13 and Right is 6-10-13 with one week of traction.

This is the scoliosis curve.  The Left pic is 6-19-13 and the Right pic is 6-10-13 with one week traction.  It kind of looks worse the way it's zoomed in, but its not.

June 18, 2013

June 18, 2013

Going good here. Clayton had a fall on Father's Day morning, but he seemed to be fine and everyone said all of the kids have at least one fall.  Shortly after, my hand got closed in an elevator.  Yes.  Usually the sensors are sensitive to anything waving them open, buy not this time.  So when our nurse stopped us for a minute and I was holding the elevator for us, it closed.  We got it open, no damage done, but we gave the nurses plenty of scares that morning.  Otherwise, Clayton is doing good. He's at 15 to 20 pounds of traction and seems relatively happy through out everything.  He definitely seems to like his walker.  We are still waiting to start his bed traction.  Clayton has started picking his feet up in the walker and hanging from his halo on a regular basis.  Just crazy!
We get to go on walks every day though and end up wandering around the hospital at least four times a day.  The weekends are great because we have the whole hospital to ourselves.  It is unlike any other hospital we have been in.   George left Monday morning, so it's just me and Clayton now.  Wish us luck!

June 15, 2013

June 14, 2013...Shame

I have tried to be patient as we have been accused and judged based off of my blog over the past year (it seems mostly by the same person or group of people), but my patience have run out.  Most recently, we are being questioned about how we can afford to build a house when others are doing fundraisers for us.  This accusation was made because I made a brief comment about distracting myself from Clayton's back by focusing on building a house among other things.  This is ridiculous.  I was so upset by something someone said last summer, that I almost quit the blog all together, but George begged me not to.  I might blog about our life, but it is one part of our life.  So to this person questioning our building a house, let me give you the full picture...which by the way is none of your damn business!
We bought our house 3 years ago.  George had a different job, cancer was not a part of our lives and I had just graduated from college.  We thought our lives were headed a different direction.  Now we have a $1200 mortgage and are traveling around the country fighting for our son's health and we need a less expensive option.  My parents have property in the country and have said that we can build on their property.  We plan to cut our mortgage in half by building a small basic house on FREE property.  That is how we can afford to build our own house.  We are trying to build a life we can afford based on George's salary alone because I will most likely be spending a lot of time in and out of hospitals with Clayton and not able to have a steady income.  We are going to be doing the work ourselves, no contractor or superintendent.  We will have painted plywood walls and floors until we can afford to lay hard flooring for Clayton's allergies and put paneling on the walls.  There will be no molding or extras.  We will pay for things as we can over the years by being smart financially.  We are selling our house with its $1200 mortgage and downsizing to a simpler way of life that we can afford.  I'm taking the time while in Texas to research every cost efficient means of building I can find.  That is how we are doing it.  We are building a simple box that in 20 years time we can turn into our dream home, but for now it will be a simple very basic box of a house.  God didn't give us the luxurious life we once dreamed about, so George and I are adapting and getting smarter about how we live.
As for our other purchases this past year, we bought a car by cashing in George's retirement plan from his old job because my car had already quit working once and his truck already had so many miles on it.  We purchased a modest, basic, used car at a good price and traded in my old car.  We were doing a lot of driving and needed a safe vehicle to tote Clayton to and from the doctor/hospital.
An amazing family in Fairhope gave us some money last Christmas and told us to spend it on something we needed other than medical expenses, so we bought a refrigerator because our old hand be down from my dad had already broken on us once and I didn't want to come home from the hospital to everything melted on the floor.
Then after Clayton finished chemo, we got a Pottery Barn card and purchased a basic sofa by using all of my birthday money from different family members and paying $50 a month from our personal bank account towards the difference.  I thought we deserved a sofa that hadn't been plagued by chemo side effects and urine.
It takes every penny we have to make things work and there is no room for savings.  Which is the number one reason we are building this house and selling our current one.  We are trying to put ourselves in a better financial position so we can save for Clayton's expenses, a broken AC, etc. or a rainy day.  Because we are smart enough to realize that life doesn't stop just because our child has health issues.
George and I have always tried to be responsible about each and every kindness we have been shown. Whether it was money or something else.  Clayton's account has been used for his medical and traveling expenses.  It has paid for more than $15,000 in flights for his treatment, more than $5,000 in ambulance rides and hundreds in fees at the Ronald McDonald House among other medical or medical related expenses.  What it has not paid for was my car, our refrigerator, our sofa, etc.  Nor will it pay for our building a house.  We are building a house that George's salary alone can pay for in conjunction with our other necessary monthly bills.   
We didn't ask for this.  We are making the best life we can with the challenges we have been given and shame on this person for judging us without knowing the big picture.  You think we enjoy this?  We watch our friends lives move on and up and we are stuck fighting for the littlest love of our life sadly (but gratefully) depending on others to help us get him the care he needs.   We are also trying our best to pay it forward by working (completely on a volunteer basis) to make The George Clayton Childhood Cancer Foundation a successful means of funding for pediatric cancer research.  Nobody wants to be in this situation including us.  But we are and we are making the best of it because our world happily revolves around Clayton no matter what trials it means we must endure as a family.  Having people kind enough to support our family and raise funds for Clayton's medical expenses eases our financial burden, it does not ease our pain and the hurt we see our son go through time and time again. 
If this person thinks they can handle this life and the financial pressures that come with it better than we can, then why did God chose George and I?  Why didn't God give this person these obstacles?  Clearly God felt George and I were the stronger, wiser and more responsible individuals to handle these burdens.
George and I put our lives out there through this blog so that those that care about us can keep up with Clayton and to educate those about life with a child with cancer and special needs.  For someone to use this blog to make false assumptions and accusations about our lives is disgusting.

June 14, 2013

June 13, 2013

Happy Birthday Mom!

June 13, 2013

June 12, 2013 UDATED

Yesterday, I was riddled with anxiety;  will he be mad at us when he wakes up with the halo, will he think we betrayed him yet again, will he adjust ok, will it hurt, how will he lay on his side as he so often does...there were even a few is he breathing funny post op worries.  But today represents every reason I have been excited to do this treatment and to do it here at TSRHC.  He has been wonderful!  You would never know he had the halo except for the fact that it makes for a bit of a wide load.

He got to take a shower tonight and after he realized nobody was going to be doing anything to him, he loved it.  Which is great because he will need a shower every night to help keep the pins clean!  
He did a couple of hours of traction tonight and did not seem bothered by it at all.  We started him off with between two and five pounds.  Over the next couple of weeks, he will move up to 20 pounds.  Here's how it works... His halo has a ring that attaches to a hook that can spin all the way around.  That is connected to a pulley system which is connected to another pulley system through cording.  The top pulley system is linked to springs on either side that provide a controlled amount of weighted traction.  We tighten the cord to allow for the amount of traction we are aiming for.  The actual traction will vary slightly depending on whether he is slouching or not.  The more he slouches, the more traction he gets.  As the traction gently pulls up on his spine, gravity will be pulling down in order to "stretch" him out.  Hopefully we do X-rays in two weeks to check for results.  And because I know many of you have a hard time picturing this, though you are trying...

It seems cruel, it seems hard to believe, but we have seen the good that comes from this treatment.  Without it, Clayton's scoliosis would one day cripple his body and impair its functioning.  So despite what it may seem, the children don't seem bothered by it and it can fix them...safely. Yes, it is the safest means for correcting scoliosis.
Anyway, we also really like this hospital.  It is relatively small and we have all kinds of freedom around the grounds.  We can go almost anywhere in the building and at night all of the floors except for our own are absolute empty which is awesome.  We actually use the top floor as our walking track because its one big circle...and it has a solarium with a basketball hoop.  Here is mine and Clayton's home for the next few months...

Our room is the last three windows on the top floor.

June 12, 2013

June 11, 2013

He was so happy this morning which made putting him to sleep to get his halo feel like even more of a betrayal.

But now, the halo on...

He did really good after he woke up.  He is slowly adjusting. Just a bad headache today...

He was quite content after I got him a flag!

June 11, 2013

The Ronald McDonald House Dallas

We won't have a room here all the time since we will be living in the hospital, but whenever George or my mom or George's mom come to visit, we will get a room.  And we might get to spend a night out here or there too, in which case we would go back to the Ronald for a night and a day maybe.  The whole place is very...Texas.  Oh, and it is handicap ready.  They obviously designed it with wheelchairs in mind, which George and I can tell you is not true of all Ronald McDonald houses...orthopedics are big here.