Our Journey - Part 4

By the spring of 2010, things with Joey were getting really bad.  I think in a lot of ways, I wanted to deny it.  I wanted to hold on to my beautiful, bright little boy.

It hurts to read this all again because it hurts to know what that terrible cancer beast was doing to him.

I was telling Hubby the other night about another blog I have begun reading.  The woman had lost her son, but I couldn't figure out how.  Then one day she posted a link where she talked the accident in which during a torrential downpour he was swept away in a raging creek while playing with some friends.

I've said before that I live in fear of freak accidents, now more than ever.  At least I knew what was coming.  At least I had time to say good-bye.

  • Written Mar 25, 2010 1:09pm
    Groundhog Day
    "Mommy, why is Playhouse Disney still on?"  Joey asks me as we sit here for chemo.

    "Well, here at the hospital, they play it in a loop all day long.  Isn't that neat?"  I answered.

    Nurse Claudia comes in and changes the chemo bag.

    "Look, Mommy, Playhouse Disney is still on.  Why is it still on?"  Joey will ask me this three more times.  And each time I keep the smile in my voice as I give the same answer.

    The beast has thrust us into reliving Groundhog Day over and over and over.  Joey's short term memory is gone.  Not only is he asking the same questions over and over, he now cannot remember something he did five minutes ago, even one minute ago.  I have long passed getting upset or irritated because I realize just what this is.  This is a little boy who cannot help not knowing, and he needs his mommy to answer his questions.

    And so she does as she internally cringes every time she knows that she will be asked the same question. She keeps a smile in her voice and holds fast to patience that comes from the depths of a pleading prayer.

    Joey received his chemo infusion two weeks ago and went back on his nightly Temodar.  His cough cleared up, and after three weeks of being absent, he went back to school on Monday.  He took two naps of an hour or more apiece, and when he got into the car, he couldn't remember one single thing he had done at school that day.

    To me, this is one of the most painful parts, so far, of this tumor process.  This is Joey we're talking about.  He's a little boy who can remember with great detail an event that happened when he was two.  He's a boy who would come home from school and give a minute-by-minute replay of his day.  He is the boy I relied on to answer the questions I would ask of all the boys, and when none was willing to share, Joey would step up and fill me in.  Now I'm afraid I will never know everything I want to know.

    I can't believe the other boys don't notice that he is repeating himself or asking the same questions.  But Joey has always been the kid who, if he didn't get an immediate response to the question he asked or the statement he gave, he would simply keep repeating himself until he received the response he desired.  I feel like this is why we were never really sure about what was going on cognitively with Joey repeating himself until the memory loss confirmed what we had expected.

    In the last two weeks, Joey has also had more episodes of what seemed like really bad reflux, but we suspected might be small seizures.  Nurse Claudia witnessed one today and said that it was in fact seizure activity.  He is now having about three a day.  He has an appointment with neurology next week and a possible MRI.  The doctor is checking his Keppra level (his anti-seizure medication) and his prolactin level (a hormone that is secreted during a seizure).

    Joey is very sleepy, with not much energy.  There are a few times that he giggles over something that has been said or makes a joke of his own, and we relish these moments.

    So, for now, I will continue to answer the same questions over and over, but it is wearing me down.  It is all I can do at night to crawl onto the couch and hope that I can fall asleep listening to mindless television rather than lying in quiet darkness in my own bed with those questions, as well as my own, replaying over and over in my head.  We may have been thrust into this Groundhog Day loop, but I am trying to cling to each and every one of those days.

    Written Jun 6, 2010 Down, But Not Out
    • It is summer once again.  I cannot believe how quickly the school year flew by.  As I reflect back, I am so glad Joey got to attend kindergarten for a while, although I was so sad and disappointed about how it ended.  There were events that I wanted to bring Joey to, like the all-school mass, field day, the kindergarten swim party, or even just to say good-bye to his classmates on the last day of school.  But, for one reason or another, we didn't make it to any of those.  It made the school year feel incomplete somehow, unfinished, and I saw these things as defeats.
    Joey is no longer on chemo of any kind.  Dr. A decided it just wasn't doing enough for him and began looking for drug trials that he could be a part of.  She found one, but it ended up that Joey's liver enzymes were too high to be a candidate.  Ironically, the liver enzymes were too high because he is now on six milligrams of steroids a day to prevent seizures.  Without this, he would be having more than the one seizure he is having a day.

    So, we're feeling down.  We look at Joey and what has become of him, and it is so hard not to feel way, way down.  He is very weak.  It is hard for him to walk, to hold a spoon, to chew, and even swallow.  He sleeps almost all day, and when he is awake, there is no more sparkle at all left in his eyes.  No smiles, no talking in Stripey Kitten's voice.  It has been weeks since I have heard him say, "Thank you," or "I love you, Mommy."  He has become very stubborn over strange issues, and I'm not sure why this is.  He says many things that do not make sense.

    And then, he will be awake for a large portion of the day.  Or he will say yes to the invitation to sit outside or go to our babysitter's graduation party.  Or he will want to sit with his brothers and read stories at night.  But these instances are extremely rare, and mostly, I have just been sitting with him at home.  I know this hurts the rest of my family, but I can't bear to be away from him for too long.

    A couple of months ago, the social worker in the hem/onc clinic gave me a nomination form for the Spirit of Survivorship award.  I decided I would fill it out, and perhaps have his teacher fill one out too.  I had no idea how far it would expand out from there.  Many of Joey's other teachers filled out a nomination form, as well as his principal, school nurse, and the pastor of our church.
    Today, in a truly moving ceremony on a beautiful day, Joey received the award for his age group, and I breathed a sigh of relief as he actually made it through the ceremony without anything catastrophic happening.

    The ceremony was attended by cancer survivors and their families and friends.  The keynote speaker was a woman named Ruth Wassinger, an author, a marathon runner, and a cancer survivor who spoke passionately about how tough cancer is and about not letting it win.  I sat in the front row, next to my little honoree and cried.  I cried about how it will beat Joey, but I'll be damned if I let it beat my family down. 

    I generally avoid situations where cancer is being talked about and survivors are being honored because it just hurts too much.  But today, I am so glad I went.  I sat there realizing how much Joey has affected so many people's lives, and how I want to be a better person because of him.  I want to adopt his spirit of adventure, of humor, of kindness, of courage, and as Nurse Bridget said when she introduced the award to Joey, I want to be kinder, gentler, and take better care of people because of him.

    Joey had an MRI last week.  It showed that, of course, the tumor is growing, and it is now taking a path along the optic nerve.  It angers me to imagine this thing running unchained like some deranged, laughing monster.  Like Ms. Wassinger said today, I want to spit in its eye and stomp on its toes and twist its fingers until it cries out, but I can't.  I can take care of my sweet boy and hug and kiss and spend as much time as I can with my other little and big boys.  I can vow that I am not going to let cancer ruin me or my family.  I can decide that it will make us - all of us - better for having been affected by it.  It may knock us down and kick us while we are on the ground, but it is not going to take us out.

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