March 25, 2013

March 24,2013

I've been side tracked getting things ready for the foundation lately.  Lots of legal details to tend to.  I cannot even express just how excited I am about this and how much I am looking forward to this chapter of our lives.  This has been a long road.   I have heard the expression, "God gives special babies to special people" and never though much of it...truth be told, it always bugged me a little.  This is what I have decided though; I think God gives special needs children to people who have the potential to be more or do more in the world.  What people choose to do is up to them, I think God just gives certain people eye opening experiences that allow them to be a voice for something bigger then themselves if they so choose.
George and I have wondered since Clayton's diagnosis if I would continue to be able to work or not, and our wonderful co workers and supervisors (we'll call them Mr. G and Mr. S) helped make that possible over the past almost year and half.  But the past three months George and I have again been thinking about whether or not I would be able to continue working.  Realizing how much time Clayton's back was going to take on top of his cancer was causing me to feel a lot of pressure.  Like most couples, George and I take care of different things.  When it comes to Clayton's medical, that's mostly all me, so balancing that (scheduling, time off, talking with doctors, etc.) wears more on me than on George.  In the same manner, when something is going on with Clayton, George prefers I am with Clayton because I take care of things and know all the necessary details.  For that reason, George can focus on work better and doesn't have to be as worried when I am with Clayton.  It has been hard on George and I to rely on our mothers to tell us what is going on with Clayton during the day.  It is hard to expect them to know what to look for or to know when something unusual is just wrong.  It was like just Thursday, Clayton was having green pee with little particles in it.  Seriously, I wish I was joking, but these medical anomalies seem to follow Clayton around.  Anyway, this spurred a last minute doctors visit with his nephrologist in Pensacola and a visit to the lab at Thomas Hospital.  (They think it has to do with his stent shifting slightly)  It is the unexpected though like this that has kept George and I thinking about the best thing or our family.
In general, our family is stressed out and tired and have watched our lives and all of our health spiral out of control.  We need to find a way to make our lives work again.   On top of that add the fact that our four year old seems to be regressing slightly to the terrible two's.  We have known that something has to change.  The primary reasons I have continued working throughout everything have been that we needed the second income and a sense of obligation or duty to those that have been so good to us.  I almost resigned in January, but decided to stick around a little longer after some changes at work.  In the end, Clayton needs me and is going to continue to be demanding medically, therefore my last day will be this Friday.  It was a scary decision, but one George and I have thought long and hard about and feel is best for Clayton and our family.  A lot of it came down to what I could live with and what I couldn't.  I can live with walking away from a good job and kicking myself in two years for that decision.  I cannot live with Clayton relapsing in two years and my not having been with him the way I should have been or my not having fought with all of my might to help the doctors find better treatment options.  I am the kind of person that likes to devote myself to what I am doing.  I haven't been able to devote myself to work the way I would like because of Clayton and I haven't been able to devote myself to Clayton the way I should because of work.  So it was time to make a decision.
The second piece to this is the kindnesses so many have shown us since our journey started.  So many of you have given your support in multiple ways and George and I want to pay those kindnesses forward.  We could not have come this far without you.  Seriously, the fundraisers done by friends and family and the donations to Clayton's bank account allowed us to travel to and from NYC.  We have spent more than $15,000 in flights alone for Clayton's treatment since this journey began.  We NEVER could have done that without y'all.  There are programs that will provide tickets at a reduced rate if you can book more than two weeks in advance, but as most cancer families will tell you, there are almost always last minute schedule changes that mean those programs don't work for us most of the time.  Then there is Corporate Angels, but there aren't a lot of corporate flights within a 100 mile radius of home and NYC so that hasn't worked for us either.  So without you wonderful people, we could not have gotten our son the treatment he needed.  And then all of our wonderful co workers that for a while were allowed to donate sick time; y'all helped us pay the bills and keep our house during a time were we had to be away from work while fighting for our son's life.  Knowing that people have your back in that way is beyond words.  Y'all are wonderful.

On a side note: George and I have tried to be as responsible as possible with Clayton's bank account.  It is a hard situation to be in accepting donations from people.  While we of course are unbelievably grateful, it always feels odd to spend money that didn't seem like ours.  So we just want everyone to know we have always tried to be as responsible and respectful with and of those donations as possible.  We have always separated our personal expenses from Clayton's medical expenses and saved that money for medical expenses.  Those donations have just meant so much to us and we want to make sure everyone knows how much we respect the kindness behind each and every one of them.  I am sorry I have not been more diligent about writing thank you notes to everyone.  I have taken thank you notes to the hospital so many times to write, and then they still go home with me blank.

One of the most important things George and I have taken from this are the lessons learned from so many that have been so thoughtful and generous to us.  George and I see so much that we did not see before this journey and each and every kindness has shown George and I the ways in which we can be better people.  There is so much we were just blind to before this.  Things as simple as bringing someone dinner.  As silly as it might seem, we didn't understand what even the smallest gestures can mean to someone.  So now, George and I want to give back.  So we decided that I would resign from my job in order to pursue something that would not only allow me more time with Clayton, but would also allow me to work for a cause close to our hearts.  I know my decision was questionable to a couple of our family members, but after all George and I have been through I can only hope they believe in us enough to trust we are capable of making the smartest decision for our family.  I realize that people see success differently and for me a life of success is one where I can work hard and feel good about the work I am doing; one where I can feel as though I am giving back to something worthwhile.  Anyhow, I am very excited about the future of this foundation.  I am particularly optimistic about the impact the foundation can make in the lives of so many suffering through pediatric cancer. 

Here is the foundation's website:

Here is an example of what the foundation aspires to be:

You can see how much they give to researchers in hopes of funding new treatment options.

So here is to new ventures!

Our first fundraiser is coming up in May:

Additionally, the foundation's thrift store is also opening for donations as of April 1st.  It is an upscale thrift store.  So clean out your attics, garages, etc.  We are looking for items in good or better condition.  No clothing, no kids toys.  We hope to be open for sales as of April 8th.  If you need something picked up, just let us know!  Contact me through Facebook or at

Thanks y'all!

March 15, 2013

March 15, 2013

Clayton dances now! I have waited four years for my sweet baby to dance and now he does! I. Love. It. Oh it makes me so happy to see him shaking those sweet little hips.

In other news, the foundation website is ready for viewing! I will be adding to it in the coming weeks, but its operational for now. I will be adding a page for foundation sponsors as well. If you know anyone who might like to become a sponsor, send them my way!

March 11, 2013


"Walk by faith, not by sight. As you take steps of faith, depending on Me, I will show you how much I can do for you. If you live your life too safely, you will never know the thrill of seeing me work through you."

I am always telling George or my mom to just trust me, believe in me, have faith in me. I suppose now it is time for me to have faith in God in a way greater than what I have shown in the past. It has always been easier for me to look to science when I needed answers. After all, science is about problem solving. The idea of being disappointed by the outcome of Clayton's health and blaming God, was hard for me. I didn't want to hate God for failing me or taking my son from me. Then I heard something that did not make me fear the future less, but it did make the idea of the worst a little more bearable. Someone was talking about asking God, "why, why would you take my child from me?" It was to this that someone responded, " but He did not take him, he received him." It was a new way of thinking about the pain of losing a child...for me. It helped me.
Anyway, two things throughout this journey and even my life have had a profound effect on my faith. One is the above story, and the second is my sweet friend Elissa. Watching her unwavering faith even at the lowest moments of her child's treatment was amazing. She and her husband were told they could only buy Matthew a little more time and yet their faith was unbelievable! They fasted, they prayed, they hoped. And Matthew whose boney disease had been unresponsive to chemo saw MAJOR improvement! So much that they are now home again waiting for their next treatment with good reason to hope for NED. Elissa's faith is inspiring. I love her, I love Matthew and am so honored to have met them.
All of this brings me to my faith. When to hold on, when to hope, when to take chances and find the right time to leap. I have faith in myself, I have faith in my abilities, I know I am good at certain things, yet leaping is scary... But it's about having faith that things will work out if they are meant too. The same way I ask people to trust me, I have to let go and trust God more. I have to trust that hopefully He won't let me fall on my face; though it wouldn't be the first time. ;)
So here I am with my foot hanging off the edge, with faith that this is the right move and sense to know that it is a good idea; ready to dive in. The new project for the George Clayton Childhood Cancer Foundation:

So excited to start giving back and doing more to help save babies!
SO excited!  We will start accepting donations April 1st.  I'll be back with more information later.  Still tying up the last minute business side of things!
Did I mention I was happy about this.....

Oh, and we are going to make t-shirts for the foundation if anyone is interested!  I am still working on the final design. 

March 10, 2013

March 10, 2013

Lots of random tidbits today.
Did I ever mention Clayton lost his two front bottom teeth? Well he did; back before Christmas. I've been watching them come in because I've heard when permanent teeth come in so young sometimes there might be some space issues. This also means we need to get on him more about brushing his teeth...he's not a fan.
He has been a total rockstar about doing his "puffs" everyday. I never would have guessed how well he would adapt to that. Since we started them, we have not had any respiratory problems. Praying it stays that way!
We had to have his port accessed and draw blood for HAMA a couple of weeks ago. He continues to be HAMA positive. Which means no treatment. He hasn't had treatment since October! We'll see how everything fits in with his new back schedule.
For now it looks like we might just be going back at the end of April for scans. Those three month scans will continue for another two and half years if he stays NED.
I have dates for his back! We will place what is called a "halo" on June 11 and we have an unknown surgery scheduled for August 27. I'll still come back and detail this later.
Oh, and we are on his FINAL round of accutane. In a week and half, we will be done! No more mood swings and peeling hands. Dang, time flys.
I have neglected posting this time, because of two reasons, one I forget how much time has gone by, but mostly because I have been a busy little bee making big plans for the foundation! Hopefully I can spill those beans in a week or so!