One day closer…

Showing off his muscles!

Showing off his muscles!

Hello stem cells!

Hello stem cells!

One day closer and you’re going home…. who knew those three little words can cause so much confusion in this brain of mine.

One day closer till he is released from the hospital, one day closer till he is able to go back to school. One day closer till he enters middle school, gets his driving license, graduates high school, heads off to college and lands his dream job. Those are the words that I repeat to myself over and over again when my little boy stares at me in excruciating pain. When he is in so much pain he can barley point or wave to someone, I just keep reminding myself that an end will eventually be in sight…

I wish those words that I force myself to repeat over and over again was what I really thought, but you see there is something that blocks those thoughts from truly sinking in. It is more like I recite those words to practice my spiel for when someone says, “oh you must be so excited that he is going home”. I want to be happy and relieved, I really do. Instead every time I hear the words “you are going home ” or “this is the end”, I get a huge pit in my stomach and my heart grows heavy.

This feeling hits me harder then the initial words, “your son has brain cancer”. You see, now I know the real truth about cancer. I am no longer overwhelmed and busy from the vast amount of information that was thrown at me. I am no longer blinded by all the lines of encouragement people gave me, the constant calls, get well cards and visits.  Now I fully understand the harsh truth about childhood cancer. I have seen what cancer has done to other families, AJ’s friends, his nurses, and himself. Those words “one day closer” or “you’re going home” brings an instant jolt to my heart.

One day closer to a relapse, one day closer to another surgery and one day closer to my biggest fear is what “one day closer” means to me….

One might ask, why I think that way. Shouldn’t I be happy that he is finished with chemo? That these long hospital stays are long gone? For the past 6 months my life has revolved around my son’s cancer. I hate seeing him in pain, sick, and spending every sunny day looking outside the hospital window instead of running in the warm sun. I hate the feeling I have when he wishes he could go swimming, but there is a feeling I hate even more. The feeling of him not being “safe.” See when he is on chemo, I know he is safe. I know that his cancer cannot spread; I know he has a whole team watching him like a hawk. No more chemo means we are “one day closer” to a relapse. A relapse that he may not be able to fight, a relapse that will give us very few options, a relapse where he will lose another chunk of his soul.

Be positive, pray, pray a lot, have faith, he will be different, he is a superhero, an amazing kid and he is AJ, you know nothing can stop him is what I hear all the time. I hope I am totally wrong (for once) and trust me I have not lost all faith, but I am not blinded by the statistics and truth of his type of cancer.  I will take him home and have him go back to his normal routine and live life to the fullest. I will make sure all the side effects from chemo and his brain tumor do not take over his little body. I will be happy, enjoy life and soak up every smile and laugh his little body produces. Every 3 months for the next few years when he goes for his MRI to check to make sure his tumor is “stable”, I will be expecting to hear that he has to put up another fight. Then when the results come back that he clean, that pit in my stomach will go back into hiding for another 3 months.

As of now my little superhero is still in the middle of his stem cell transplant. I knew he would be at his worst and I did my best to prep him for this. He is doing an amazing job so far. The amount of discomfort and pain my little superhero is in is more than I could describe. His doctors and nurses are doing a great job making his pain a little more tolerable. A constant morphine drip is his new best friend, as well as the suction tube he uses to suction his saliva because it hurts too much to even swallow his own spit! I am so proud of him. He has extremely bad mouth sores that run all the way down his throat. This is making it almost impossible for him to swallow. Somehow he musters up enough strength to swallow all his gigantic pills. He does this with no tears, whines or complaints. Last week my little man was running around his small room trying exercise the most he could. Sit-ups, “pull ups”, push-ups and a rubber restraint kept him busy for majority of the day. Anytime someone came into his room, he would instantly show them his muscles and compare whose are bigger. Of course he always had the bigger ones. This week I caught him a few times flexing his “guns” and doing leg lifts in bed. I can tell by the way he looks at his stomach and arms  that he notices how much his body has changed. I think in his head, if his body stays strong then he will be healthier and heal faster. In many ways he is right.
I am hoping within the next few days he will start feeling better and maybe start eating and drinking again. It’s been about a week since he took even the smallest bite of food. He only drinks enough water or juice to swallows his pills.

In the past two weeks AJ has wanted to read a lot more. We spend majority of the day reading together. Although this week since he cannot talk, I have been reading to him. His new favorite books are the “Little Critter” series by Mercer Mayer. He has never been a fan of reading for fun, so I am taking full advantage of this opportunity.

He still has his little smart A** personality. One of the volunteers that he loves bought him some items to prank people with, so watch out if you mess with him! He has also found a new love for the show “ridiculousness”. I do understand that it is ridiculous for me to even let him watch that show, but my son is 6 going on 30 anyway. Plus now he is fully aware of what stupid teenagers look like. He promises to never be one of them, I will remind him of that statement in 10 years.
So for now we keep pushing forward and take everything one day at a time. I do not want people to think that my carefree happy self vanished. I am still here; I still have faith that my amazing son will defy all odds and grow up to do great things.

Those words “One day closer” or “you’re going home” will never bring me much enjoyment and will always make me cringe, but since day one I promised myself that I would make this experience a positive one. I finally figured out what I am going to focus my attention on. I am getting very excited that my ideas and planning are starting to come together…So stay tuned. I hope all of you will be apart of my contribution to this bumpy world of pediatric cancer.

~Exciting events~

Once again I am so blessed that we have another organization that is throwing an event to help support our little superhero. On Tuesday October 21st U.S.S cares is hosting a fall harvest. Please read the flyer below and pass it around if you can! Thank you once again for everyone support! Also click the two links below for more info!
8x10harvestfest (1)

We tried to spruce up his room a little bit!

We tried to spruce up his room a little bit!

Swollen cheeks and his suction... :(

Swollen cheeks and his suction… 😦

One comment

  1. Hi Sarah my sweetie,Happy Birthday! Tomorrow I go for a Pet Scan and Friday I get the results
    I know how the pit of my stomach feel too,as do you. I hope for the best and try and be positive. Sending LOVE to you and A.J.
    Aunt Linda

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