How can you honestly deal with the fact that for the rest of your son's life he is going to have this disease over his head. That no matter what we do right now, we are only trying to postpone the inevitable. Everyday I see my son take his medications, his oral chemo, and wonder when the next big hospital stay will be. I can't help but think of all the things that he has to deal with, all the things that seem to go through his little mind. He was Five at the time.
A year and a half ago was the worst day of my life. I had taken my son into the doctors for a stomach ache that had lasted almost a month, had just gotten some blood work taken about an hour previous, when I had a phone call to come in to her office, for the results. So I pack up the kids and head back there only to discover that my son had ACUTE LYMBLASTIC LEUKEMIA. How did I react? Well lets just say that I cried, hard for a few minutes, watching my son playing with his brother on the floor, and he looked up at me, and said MOMMY am I going to be OK.
How the hell do you honestly answer that. "Well according to the Doctors we can poison your body for a few years, and then you might survive" I couldn't. I can't lie to them, but I can't tell him the truth. So I told him I was going to do my damn best to make that happen. Then as I am told to get to our local hospital as he needs to start treatment right away, I am told that he will be flown to the children's hospital and that they can only take one other person besides my son. I AM A SINGLE PARENT WITH TWO KIDS. UM OK problem here. So I start trying my hardest to get a hold of as many family and friends as I can. To no avail. I am finally able to reach my mother, had to leave a message at first. YEAH NOT HOW I"D LIKE TO HAVE DONE IT. "MOM, its me, Little T has Cancer, and we are on our way to your hometown - Four hours away. Well I think she could have won the Indy, so got here so fast. I was still packing a few things when she arrived at my door. Well needless to say I had to call his father up, hasn't been much of one, but needed someone my son would feel comfortable with, cause my youngest still needed me a lot at the time as well TORN BETWEEN BOTH. How can you honestly pick which child needs you more.
So I finally get to the hospital four hours after my son arrived, and then I had an interesting time trying to find out where he was, which room he was in, etc. I got in there, and was he mad. He had been poked, and blood drawn, and tubes were everywhere and he was so scared, it BROKE MY HEART. For the next few weeks, it was the start of it all, the schedules, the education of all the things I had to learn, the trying to juggle back and forth between both of my kids, have to be there for both. That's what a good parent does. Trying to save my already failing relationship, trying to pay the bills, with no job anymore, gone to long, and knowing that I can't return for awhile, since My son pretty much has to be isolated from the rest of the world. So He finally gets discharged the weekend of his birthday, with a small bald head. He was so sad, His party and all he wanted was his hair, and his best friend. Both of which I couldn't give him.
Finally after two months we are able to leave the area, and come home. So I came home to new rules, no job, double the rent, no boyfriend or significant other, and um not allowed to be around people. Hard yes, We then had some new and interesting things develop with his cancer. A feeding tube, the throwing up every few hours, never feeling good. My kids both fighting for my attention, and me slowly draining my energy, but keep going cause I am using duracell batteries. Yeah don't I wish, recharge myself every night.
So its now been a year and a half and we still have about 2.5 years to go. My son has been homeschooled by myself, and I have managed to keep him out of the hospital for most of the time, cause I am overly protective, and CLEAN. He can't play with other kids, cause he has never had the chicken pox which WILL Kill him if he gets it now cause well his Immune System is lower then .6 VERY LOW. So he is a seven year old boy now who can't go to play grounds, can't go to school, can't have friends, sleep overs, nothing. He has me and his brother everyday. For us going to my mothers is a treat. Or going to a open field to kick a ball with us is a treat.
I am now beginning to see signs of the long term effects. He is loosing his reflexes in his legs. This is a kid who loves to play soccer, and loves Hockey, to be loosing his reflexes, what is that going to do to him. He always has black eyes, and we are always getting comments like "Oh sheesh look at that boy, his mother beats him, she shouldn't have kids" SHUT THE FLUP UP. I am so sick of having to explain to people that I don't beat my kids, that maybe if they shut their traps and stop assuming crap that the world would be a better place. That he has CANCER. Then I want to leave, cause I am forced to explain myself to a flipping stranger. Its pathetic.
Our complex think we are the weird family who hides from everyone, who never lets her kids play with other kids, and I am again sick of explaining myself to anyone. So I don't let them think what they want. They are going to anyways. Plus I don't want anyone feeling sorry for him, I want him to be as normal as possible.
I can't get out, I don't have many friends that come by to visit, cause THEY HAVE KIDS. So I sit in my little house, and pretend that everything is ok, that we are living a normal life, until I see my son staring outside at the father playing hockey with his son, and some of the other neighborhood kids, or how he wants to play mini golf, or go to the GO-Kart tracks, go swimming, or PLAY SOCCER. He wants friends, and he cries about it, but there isn't a damn thing I can do about it.
Because of this Cancer, he has now developed some interesting fears. He feels that if he doesn't wash his hands with disinfectant all the time, I am talking ALL THE TIME, that he will get sick and die, he will cry himself to sleep and ask me if he is going to wake up in the morning. He asks me if their is a god, why did he do this to him. He wonders if its going to hurt when he dies, and that he will miss me, and doesn't want to die. He holds his younger brothers hand at night when he is sleeping cause he says this way he knows he can't die, cause brother is with him.
He will start to cry at the mere mention of the BC Children's hospital visit, cause he knows what is going to happen to him, that he will try his hardest to stay awake as long as he can, or he will hide the keys so we can't go on the day of the procedures.
We will be in the hospital for his LP - spinal chemo, and he will be going under. Crying to me, asking me why him, and that he will be better, that he won't misbehave. I try to tell him its not his fault that he didn't do anything wrong, but it doesn't make a difference.
Yes he is seeing a therapist, but its not helping he just wants to be ok. There is this song that Rascall Flatts sings called "Skin", well frankly that song makes me cry every time I hear it, cause it reminds me of when I first found out about my son, and all the things that he might miss, and how something like loosing your hair, is a really bad thing. I know its worse for girls, but its different if you shave your head for good reasons, but to loose it, on its own, is a bad thing.
Everyday I am thankful for the next day or even just to have him another day, but honestly there are some days that I wonder why I keep going, why I am putting him through such torcher, is it for selfish reasons, or will he really make it through this and be ok. What kind of life will he have when its over, if its ever over. For the rest of his life, I am going to be always wondering when it is going to come back, if its going to come back. He will always be worried about it, he is always going to be scared to do anything for fear of getting hurt, or of it coming back. As it is, we don't know if its working, until the time is up. Then we sit and wait. Plus by giving him these chemo treatments, we are upping his chances of getting another kind of cancer later on, and we are slowly poisoning his body.
HOW THE HELL, DOES ANY SAIN PERSON DEAL WITH THIS?
As well I am so sick of everyone saying that it will be ok, cause FRANKLY ITS NOT FLIPPING OK RIGHT NOW. Most people can only try to think what its like to have a sick child. But to actually have it happen is undeniable the worst thing to possible have happen. I would do almost anything to have this taken from him. I know that by the time he finishes his chemo he will be 9 almost ten. That he will be going back to school, cause some how I need to pay the bills, and he will be thrown into a circle of peers, that well have all dealt with bullies, have all dealt with other kids, and he won't even know how to play with another child, he won't know what to say, or how to cope with the already harshness of Life, let alone anything else. Do I worry about his future? Heck yes, and I am frankly scared shitless for us all. Do I cry about it? Hell yes, and then I wipe my tears away and pretend that everything is going to be alright, cause we have no other choice. Am I depressed? Hell yes, and there is absolutely no way I can totally get rid of it, cause no matter what I am always going to be worried about this, on top of all the other detrimental and Draconian things that will happen with life.
SUCK IT UP BUTTERCUP.
