Monday, October 31, 2011

Our Journey with Leukemia

I did a guest blog for Brian Hayden today and you can find it here

And after writing it, I thought I should try and add to it with a little more of the personal side of having a child diagnosed with leukemia.
I tend to "Just stick to the facts Ma'am"
 I'm not saying it's hard to talk about it, but it's hard to talk about it.
Does that make sense? :-)
Talking about it brings back memories, thoughts and feelings,
 that I haven't had in quite some time. But here goes.

   It was a Monday when I first took Bobby to see his pediatrician.
 He hadn't been feeling well, off and on for a few weeks.
He would run a temperature and feel achy for a day or two,
 be fine for a week and then start the process all over again.
That day was one of his "fine" days, but that night he spiked a fever.
Back to the doctors the next day
 for a more extensive exam and blood tests
and then you wait.
Thursday brought a call from the doctor to come back in.
More tests, more blood being drawn, and then after an exhausting day, some results.
"I believe he has some type of malignancy and I'm having him admitted to the hospital for further tests."
Now my first thought was bone cancer, simply because, it was Bobby's legs that were affected.
That's where his pains were and by the end of that day, his legs were so weak, he could barely walk.

    After a week of blood draws, lumbar punctures, bone scans, x-rays,
 and bone marrow aspirations, the diagnosis was in.
Acute Lymphocytic Leukemia the doctor told us.
Why you wonder. When they are born the nurse shows you how perfect they are.
 Counting all their fingers and toes.
He had a healthy childhood.
 Of course he had the occasional cold or ear infection, but nothing dramatic.
At that point, life as we knew it, was turned upside down.
Now instead of school, bike rides, playing outside,
there was chemo, blood tests, radiation treatments,
 spinal taps, steroids, and side effects.
Oh and a Central Venous Catheter. (Which my son Adam told me, at the precious age of five,
 that never wanted to turn 10,
 because then you get one of those tubes put in your chest)

As for side effects, Bobby only got sick to his stomach once and that's because I asked the nurse to speed up his  8 hour cytoxin drip. He threw up in the car all the way home.
I never asked for her to do that again! Lesson learned :-)
He lost his hair twice. He had just been allowed to go back to school after 10 months of staying home and driving me crazy. (Hey! Cancer or not, he was still an 11 year old kid!) His hair wasn't quite in yet and he was allowed to wear a hat in class. The teacher was great. He explained everything to his students and let me tell you, 6 grade students are Awesome!
One day they had a substitute teacher and it was music day in the cafeteria.
 The sub left the class there and went and took his break. The music teacher not knowing, told Bobby to remove his hat, Bobby just stared at her. She threatened him with being sent to the office and of course worried that he would get in trouble, he removed his hat, even though his classmates told him he didn't have too.
What a shock it was the next day, When I got called into the principal's office!
That childhood feeling comes back real quick, "Am I in trouble?"
Half of Bobby's classmates went home and told their parents what had happened and those parents all called and wanted the music teacher dismissed, they were so upset that my child had to go through that!
And the principal wanted to know how I wanted it handled.
    "This is one of those times when your heart swells and the tears roll down your cheeks."
After talking to Bobby about it, we decided to just let it slide. His hair was starting to come back in, so he wasn't completely bald, but I do have to Thank all those kids and parents. They are wonderful people!

There are other side effects and other good and bad stories to go with our five year journey, but I think I've talked your ear off enough already. One day, maybe I'll sit down and write a book about it. I even thought maybe I'd use it for my NaNoWriMo, but no, I'm a romance writer. But then again,  I could put some romance in it, throw in a few doctors and nurses, Nah!
Thanks for listening and if you would like to know more about Leukemia you can find info here,
And there's a blog here

And don't forget to check out Brian's Blog for more on our journey.
Have a great day everyone!


  1. There is both cruelty and beauty in this world, people who are thoughtless and just plain old mean, and people who are wonderful, kind, and willing to stand for others. I want to let you know that reading this post brought tears to my eyes. Your son is lucky to have you and you are lucky to have him. I wish you and your family all the best along your journey.

  2. I had to read back through what I wrote (And cried all the way through) to see if I mentioned that it will be 25 years on March 19th that my son was diagnosed and in April he will be 36 years old. :-)

  3. Wow 25 years...that is amazing and you are both awesome. :)

  4. Thanks for directing me here with your beautiful post for Joshua. I truly admire your strength, and so thrilled Bobby is well now. xoxo

  5. Hi Eden

    Sometimes it's hard to talk about it and yet it's better to talk about it. After all these years it still makes me cry for everything that we went through and family and friends that we have lost over the years to this awful disease. My heart goes out to Joshua. I pray he stays strong and positive.
    hugs to you xoxo


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