Thursday, March 25, 2010

Kids and Cancer

Cancer. It's that 5 letter word practically everyone dreads to hear. Unfortunately, it's very real in many people's lives. For the past month or so, I've been rotating through a pediatric hematology-oncology clinic and it's truly opened my eyes to what families affected by cancer go through.

So far in my life, I've had two direct contacts with cancer. I was 12 when my grandmother passed away from sepsis secondary to her leukemia. I remember her having to go through chemo, but I never grasped what that entailed. My mother-in-law battled and won bilateral breast cancer about 5 years ago. While I was old enough to comprehend things, since I didn't live with her, I don't think I understood how intensive treatment was, how often she got chemo, etc.  I was also dealing with my own anger towards the situation and I admit I did not attempt to understand her process as much as I should have.

Even though I had the two cancer interactions above, it took me rotating through a cancer clinic to start to comprehend how life-changing this is. (I don't think I'll ever know unless I personally have to go through it myself.)

I just want to give you an example and imagine being the parent of this child.

Your 4 year old doesn't have the energy he used to have. At first you thought it was because he had a cold and fever. However it seems that this cold just won't go away. You've also noticed that he looks pale and has new bruises. You've had enough and take him to the doctor hoping to get some antibiotics to treat this cold. Your pediatrician wants to get a blood count.

The blood count comes back showing your son has severely decreased numbers of white cells (infection killing cells), red blood cells, hemoglobin (the stuff in the blood that carries oxygen), and platelets (what help your blood clot). Your pediatrican tells you it looks like your child very well could have leukemia and she wants you to go to the hospital to see the cancer doctors.

So, now your day has drastically changed. Who's going to pick up the other kids from school? When are you going to finish that last errand? But not only that, why does my kid have to go to the hospital? He just had an infection he couldn't get over.

So the cancer docs come in and say they agree. It's very likely your child has leukemia. However, we won't know for sure what kind he has until we do more tests. The docs tell you they are going to have to put your son to sleep so they can test his bone marrow and do a spinal tap. What? Now my kid is having general anethesia?  What if something goes wrong?

So the bone marrow results come back and they confirm your kid has leukemia.  Treatment will start immediately.   You'll be spending at least the next week in the hospital getting chemo for your little boy.  Your little boy who was just playing games at home two days ago.  If he's not too sick, you may be able to go home after a week, but he can't go out.  He can't go to school.  He can't go to church.  He can't be around anybody with a cold.  He's going to lose his hair.  He's going to be tired.  You're going to be tired.  He's going to be on steroids.  He might be irritable.  He might be a sloth.  He'll be constantly hungry.  You'll be wondering why this happened to you.  You'll be missing work to take your kid to the clinic to get chemo or blood counts at least twice a week.

All at the same time, life around you goes on.  Your other kids need their parents.  Your employer is hopefully understanding, but can't just let you disappear.  Hopefully you're in the same city as the cancer clinic, but you may live 3 hours away. 

After the month of intensive therapy is over, your little boy can finally go back to school.  You start to rest a little easier.  But wait, he needs more treatment?  Yes.  He gets about a month off and then goes through this all over again.  After that month, he'll enter maintenance therapy, but that's as long as he's responding to treatment.  You're constantly worried the drugs aren't working.  You're constantly worried your little boy will get an infection he can't fight.  You're overwhelmed with the number of hours you spend in the cancer clinic.  You're overwhelmed with the number of drugs he has to take during the day.  You're trying to find time to maintain your relationship with your spouse.  You're trying to find time to make sure your other kids feel loved too.  You're stretched thin.

Sometime in there, your son needs surgery to place a port under his skin to help deliver the chemo.  This helps save hundreds of pokes in the veins.  You have to go see another doctor for this and take another day off work.

The hospital bills start coming.  Hopefully you have good insurance, but it's still overwhelming seeing all of the forms.

Wait.  Your son has a fever.  You can't just blow it off.  You call the cancer doctor and they tell you to come into clinic.  Your son is poked again.  They draw blood cultures and counts.  His neutrophil count is below 500.  Time to go back to the hospital.  He's too sick to fight this on his own.  He needs IV antibiotics.

Finally, you reach what the cancer doctor calls "maintenance therapy."  You give your son a chemo pill every night.  You take him to clinic once a month for chemo IV drugs.  You pray he doesn't get an infection or fever and need to be admitted to the hospital.  You do this for 3 years.

The 3 years of maintenance therapy are over.  You son is in the 2nd grade now.  He's been fighting this leukemia almost half his life.   The doctors tell you he's cured.  You're happy and want to celebrate, but know there is a small chance this could come back.  You try to live as normal a life as you can and never forget this time in your life. 

This is only one example and it's a good one.  I've seen kids who've lost their bowel and bladder control because a tumor is on their spinal cord.  I've seen kids who have relapsed and had to go through treatment all over again.  I've seen parents who have lost their jobs and insurance because they had to take so much time off to travel the 3 hours to clinic a couple of times a week.  I've seen kids who can't go to the soccer tournament they've trained for because the annoying lump in the neck was cancer.  I've seen kids who are going to die.

I've seen the reality of cancer.

Fortunately, a lot of childhood cancers are very treatable, but I don't think society appreciates what treatment entails and how much it affects a whole family's lifestyle.  I know I didn't until this month.

4 comments:

Lisa said...

Wow Amanda- that is intense... I guess I knew what was involved, but never thought about it broken down like that. I can't even begin to imagine!

Chic Fit Geek said...

Wow. That was an intense read. Thank you for sharing it. I've seen the reality of cancer too, but like you in the beginning, from the outside. For you to see the destruction cancer can have on a child up front and personal... I can't imagine the strength you must have to have.

You are strong and brave. Thank you for opening our eyes.

Susan said...

Still visiting your blog Amanda. This hit home, my son is a brain tumor suvivor, dx at 16!

It's all this and more...a phone call that changed the course of our lives, forever.

And now 5 years out, the dread of a relapse. Makes you appreciate so many things you had before.

Thanks for this post~

Ehrlich Bella said...


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