Our Journey - Part 3

All I ever really wanted for my life was happiness.  I honestly thought once I got married and had a family, life would just be happy.

Turns out it doesn't always work out that way.

But Joey and his illness taught me to look for, and sometimes really search for, the sunshine among the clouds.

Written Dec 23, 2009 11:02am
So This is Christmas...
Every time I hear John Lennon's Christmas song, Happy Christmas, I find the words to be so appropriate for us:
A very Merry Christmas and a Happy New Year,
Let's hope it's a good one without any fear.
With Christmas approaching in two days, I think I am over the fear that Joey will not be well for the holiday.  Since his surgery to replace a portion of his shunt two weeks ago, he has improved quite a bit.  After five days of throwing up, he is finally feeling better, having more energy, and has been vomit-free since Friday.  We are here in hem/onc for his chemo infusion.  Dr. A agrees with the neurosurgeons that it is too soon after surgery, and is holding off on the Avastin for another two weeks.

But, there still is the fear that I have that this Christmas will be our last with Joey.  My fear that on every subsequent Christmas after this one I won't be able to send out holiday cards if there is one person missing from the picture.  My fear that I won't be able to enjoy the holidays if I can't hear Joey's giggle or have his help decorating the Christmas candy.  There was already some sadness this year as we could not think of much to get for Joey, when in years past we never had any problem with his gifts as he was interested in everything!!

There is a line in the song that asks, "What have you done?"  That line haunts me a bit, as I wonder what I have done to make this Christmas special, not only for Joey, but everyone in our house.  I couldn't even shop - other people had to do it for me!  I have a counter full of supplies to make Christmas candy and holiday mixes, but so far only one treat has been made.  The boys were out of school last Thursday, and I thought about taking them to the Durham Museum or Children's Museum to see the holidays lights and trees, but honestly?  I didn't want anyone to catch anything that might put Joey in the hospital for another holiday.  I have a sack of toys and blankets that were destined for the Open Door Mission, or maybe at least the Humane Society, but they will sit for another year.  

What have you done...?  I must mention, though, the many people who have done some wonderful things for us lately.   Joey and Jack's fabulous kindergarten teachers had the boys make calendars with their hand prints that are so precious, and the boys' art teacher made  them pictures of their beloved stuffed animals that are just darling!!  We are going to have them framed.  A family surprised us with a (gluten-free!) ham to add to our holiday dinner, and we had some "santas" shop for us, which helped tremendously! I was invited to a couple of holiday parties with the ladies, which were such fun distractions from meds and chemo and hospital stays.

Lennon's song is subtitled "War is Over."  Our war over this cancer is far from over, and it's in the fore front of our minds constantly (unless I choose my usual denial mode and push it back somewhere in the depths of my own nightmares).  Our holiday will be a four-day extravaganza - Christmas Eve mass and presents from Mommy and Daddy, Christmas day and presents from Santa (one of which Joey keeps telling everyone Santa will bring him, and this is news to me!), the day after Christmas celebration with my family, and the day after that celebrating with Rick's family....whew!  It's a lot when everyone is well.  But, I worry the toll it will take on Joey, and how much we will all be able to enjoy it.

There's a song by that more loved ex-Beatle Paul, that talks about a "Wonderful Christmastime."  Even if the boys don't get everything they want, even if the candies don't get made, if the gluten-free cinnamon rolls on Christmas morning really don't taste good, if we don't see lights and trees or celebrate in any other way, at least we're together and safe and laughing and well for one more Christmas.  "We're here tonight, and that's enough.  Simply having a wonderful Christmastime."

  • Written Feb 12, 2010 1:06pm
    Except That One Thing
    We're still doing okay here, quite okay, in fact, although I hate to say that.  I feel like if I start thinking too positively, things will take a turn for the worse.  That is my negative thinking tendency.
    I do appreciate all you "glass-half-full" people and the comments you leave.  It is good for me to hear that.  It is good for me to hear you focusing on the "okay" and not that one other thing.
    That one other big thing.
    In the past few weeks, we have decreased Joey's steroid by a half milligram.  It may not seem like much, but any change in his routine can cause a change in Joey.  And we are constantly looking for these changes, whispering and wondering...
    Joey has been enthusiastically going to school and having great days!  He has an 8th grade buddy to help him in P.E. and is allowed to rest in the nurse's office whenever he feels the need.  His school papers come home meticulously completed and beautifully colored.  Another child reported to her mother, "Joey never does anything wrong at school.  He's never gotten a color change!"
    Except...I see that he struggles to remember sight words that I could have sworn he once knew, and sometimes gets the days of the week mixed up.  He sometimes writes letters and numbers backward.  Is that me just looking for something that's not there?
    He's taking swimming lessons, which he asked to resume after enthusiastically attending an open swim where he jumped in the pool, went down the slide, and dove for dive sticks.  He loves the lessons and is doing well.

    Except...his teacher reports that he lacks confidence.  I think he gets short of breath as well.
    We have been doing the chemo infusion of Avastin and Irinotecan every two weeks.  Even though this takes all day and wears us both out, we do crafts and watch movies and giggle about silly things.  Last week, instead of coming away with his usual nausea and diarrhea, he felt pretty good.

    Except...that it's still chemo.
    I do treasure spending this time with Joey, as well as the cuddling in bed at night.  He used to be too worn out to read any books before bed, and now we are reading two a night.  He tends to talk a lot, and I have to tell him, "It's time to be quiet now and try to go to sleep."  He wants me to tuck him in and sing to him before he goes to sleep.  He likes me to sing, "You are my Sunshine," only, as I've said before, we change the words to "You are My Sweetface."

    Except...I can never sing the last line - without gritting my teeth anyway.  Since he cuddles every night with his green spotted frog, Spotty (this is only because Stripey Kitten, when wearing her months of the year sweaters, is not very soft and cuddly) instead of singing, "Please don't take my Sweetface away," I usually just have Spotty "ribbit" that line for me.

    Some of Joey's blood counts are beginning to drop rather low, namely his white blood count, which are the infection fighting cells.  He has had the same cold since early January.  For this reason, he can not go back on his nightly Temodar.  And for this reason, today he is receiving an extra infusion called IVIG.  It is an infusion of infection fighting immunoglobulins that evidently many of the children here in the clinic receive.

    So, I see Joey having energy, being excited about school and swimming, goofing around and giggling over silly boy jokes.  And I see him fighting with and bossing around his little brothers.  It feels...a little normal.  Like I can almost think that the glass is half full.

    Although, I can't quite seem to wrap my mind around a cup that will ever be running over.

    So again, okay, slightly normal...

    ...except for that one thing, that one big, ugly, awful thing.

  • Written February 23, 2010
    Great Day for Ordinary
    The boys piled into the car after school today.  "So, did anything exciting happen today at school?" is the question I always ask.
    There was a pause, and then came Joey's voice. "Nope.  It was just a regular, ordinary Monday."

    That made me smile.

    We stopped at Nobbies after school so the boys could all help choose balloons for Daddy's birthday.  As we waited for our balloons to be inflated, Colin and Adam found an Elmo balloon that played music.  They played it over and over, batted at it, fought over it, while Joey sang "Happy birthday" in an Elmo voice and Jack took balloons out of containers and started blowing them up.

    "Got your hands full, don't you?"  The ladies inflating our balloons were laughing.

    "Ya think?"  I replied sarcastically, thinking, 'just inflate the #@*! balloons so I can get out of here!'
    When Daddy came home, there was a rush of little boys each wanting his gift opened first.  There was cake and some candles to blow out.  Joey was leading the singing of "Happy Birthday," and for a change, was not too tired for dessert.

    Before bedtime, I gave Joey a long absent dose of Temodar, his chemo medication.  Since his white count has raised some, he is back now on a lower dose.

    Later, Joey was all snuggled into bed, and as I was about to crawl in and read to him, I noticed a booger smeared on the wall (moms of boys know what I am talking about).

    "Is that a...booger?"  I questioned Joey, giving him my best one-eyebrow-raised-angry-mom stare.

    He broke out into a sheepish grin.  "Well, yeah, but it's only one.  When I slept over there" - he pointed across the room - "I used to do it all the time."

    Having no response for that, I went to get a wet cloth and made him clean it off.

    If not for the Temodar, it would have been a perfect, ordinary day.
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