Clayton
Matthew
Abigail
Justin
Zoey
Lily
Stergios
Liam
Case
Nicholas
Brooklyn
Those are just the neuroblastoma fighters that I have met...or talked with their mothers, etc. The list of neuroblastoma fighters I have just passed by or read about would be much longer...
For every kid out there fighting cancer, you are better than all of us...by miles...there is no competition. Y'all are amazing. Y'all fight this disease with such dignity that the rest of us fail in comparison.
I have sat here this week and watched my son's body be beat up from the inside out in an effort to keep the cancer at bay. He has had hives come and go; at one point they engulfed his left eye. I have watched him lose his will to eat and drink through the sedation and the pain. I have watched him struggle to keep his eyes open just to make sure that George and I are right there with him. I have seem his body writher in pain and watched him be overcome with shivers from explosive fevers brought on by these foreign agents being injected into his body in an effort to keep it cancer free. I have been here for every restless night and miserable morning. Yes, for him, the residual pain has been most miserable in the mornings. I have had to force open the mouth of my already defeated child to give him medicine as he held his breath in defiance. For days, I have sat here and lived by his oxygen saturation levels and heart rate trying to make judgements on what medicines he needs and when. The doctors write orders for you to have any of the possible medicines you need at your disposal and you just have to press the little red button and tell them what you want. The doctors do it this way because they recognize that you know your child best. That of course means you have to be aware of every detail going on. It is a tireless task trying to figure out which combinations work for him. Which ones take away the pain without slowing his breathing too much or causing agitation? How sedated do we try and keep him? We don't want him to be uncomfortable, but we don't want him strung out all the time either.
That has been the hard part about this; the pain during the infusion can be intense, but it is the around the clock residual pain that has been hard to handle for us. I feel like we were very fortunate with Clayton's experience with this so far. He had some very intense pain on day one and two that we worked through, but on days three and four he was able to sleep through the pain during the infusion with the right amount of sedatives. That made for a lot less stress. Even then though you could see his body reacting to the assault on his nerves. He twitches a little bit and his stomach gradually becomes harder as it contracts from the discomfort. We have mostly had a hard and exhausting time battling the residual pain. Lots of restlessness. As for our roommate who had a bad go of things on day one, they were able to slow things down and make it work for him to finish the week. I am so very happy they did to because that poor child has had a very long road of things.
After everything, will it work? God I hope so. There is no guarantee. There never is... I do know that this is the right place and if God forbid I ever lose Clayton to this beast I will not have any regrets about bringing him to these doctors. They are the best and they care. We had the longest talk to date with our primary here Dr. Kushner right before coming home this last time and watching his reaction to Clayton running around the office really cemented in stone for me how right this place is for us. He was so tickled seeing Clayton up and about. Just last night, we were discussing whether we could go home Sunday night or if he wanted us to stay and check on Clayton on Monday and he told George, "He was making him feel guilty, but he'd get over it." all said with a smile of course. However, when the nine month pregnant mother of Clayton's little roommate told him she planned on going home Sunday he came back to us and said it would be OK for us to go home Sunday night and to have our pediatrician check his blood pressure Monday at home as long as everything else went smooth. ;) (Leave it to the pregnant momma to advocate for all of us!) He is just a good man with a corky sense of humor and I feel so lucky to have him looking after my child. Even one of the doctors here that I had heard mixed reviews about grew on me on the first few days of 3f8 as I saw how he acted with the kids and how he really did care. And Dr. La Quaglia is amazing. George and I are so glad we no longer need him (because the surgical side of Clayton's care is over), but we were a little sad about not having him in our lives anymore. I have not met one family that has anything negative to say about that man; everyone calls him "a great man". These men are what doctors should be. They are not perfect, but they know how to check their egos at the door and be great doctors. And the 3f8 nurses? Wonderful. They are so sweet and patient and you can see how much they care for the kids too. I totally get why they do what they do everyday now.
There is so much that goes in in this world of cancer that people will never know. Little things. Like on our last trip home, we had a card from the hospital to give them at the airport saying that Clayton had recently been injected with a radio active substance. Yes, my child was injected with a substance that said hazardous on it and required a card from the hospital to clear airport screening. Crazy huh? Or things like the fact that I have seen outside less than an hour all week- and I literally mean seen, not just been outside, but seen it. Clayton's roommates mom (the one who is 9 months pregnant) is my role model. For someone going through this, she carries herself so well and for a pregnant woman, she is unbelievable. She always seems to have her wits about her...and with a smile too.
Then of course there are the kids. This past week, a 12 year old little girl who has been battling neuroblastoma for a few years now discovered that she has pre leukemia as a result from her cancer treatments. She now has two cancers at once and has therefore decided to give up her fight and try and live her life as best she can with the time she has. This little girl is BEAUTIFUL! And her life is being cut short in such a horrible way, yet she is living the time she has left with a smile on her face. You can check her out here:
http://m.youtube.com/watch?v=1slESfh_3M0
http://m.youtube.com/watch?v=e1SI3V1Ar20
http://m.youtube.com/watch?v=FgiMnABlYdo
It is easy to go home and forget the hardships that you witness or hear about on a daily basis in a place like this, but I don't want to forget. I want to remember. I want to remember every heartbreaking detail to ensure that for the rest of my life I have the drive to fight for something that is real. It isn't enough for me to just exist without a purpose. I don't care if anybody ever knows my name, but when I die I want to die knowing that someone, some child, will benefit because I fought for something meaningful. Because Clayton fought for something. Because I was inspired by my child to be the best that I could be and to do the most that I could do with my life. I have a long way to go to achieve those things, but I have one hell of a driving force.
I hope that a lot of people (particularly politicians right now) can take a page out these children's books and learn to conduct themselves with more dignity and less hate. I will probably get an earful for this, but I am going to say it anyway: I live in this world up here and then I go home and am ashamed of most of the politicians I see. They use their power to further their own agendas and don't hesitate to abuse the lives of others with their selfishness. I am ashamed of y'all. I am ashamed that such ugliness exists in such a beautiful town like mine. I am ashamed that while so much of my life is spent surrounded by kids fighting for their lives, my home is consumed by politicians full of hatred for one another and selfishness. It is a sad sad thing...
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