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:
www.thegcccf.com
Here is an example of what the foundation aspires to be:
TeamConnor
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 rachel.gcccf@gmail.com.
Thanks y'all!
