Childhood Cancer Awareness | Tales From a Cancer Mommy

Hey there friends. I hope the post title didn't scare you off or make you click away. Let me explain the back story of how this guest post came to be and then I'll let you read on ... It's important. Really important.

After I posted about Max's surgery and then the worry of hemihypertrophy my inbox started filling up. With prayers and good thoughts and so much support. You're all wonderful, really. Whether you reached out on Facebook or Instagram or email - it was amazing really, to be so surrounded and loved in such a scary time. 

One email I received was from Gretchen, Simon's mama. She knew my fear of a Wilm's tumor (it's more common with a hemihypertrophy diagnosis) and wanted to connect so I didn't feel so alone whilst going through the ultrasound and whatever came next. We've emailed a number of times and I've learned so much. Like, a whole new world has been opened up to me as we've explored Max's possible diagnosis. And it isn't pretty. And that's why Gretchen and I have teamed up to shed some light on the sad state of childhood cancer awareness.

I mean, September is National Childhood Cancer Awareness month after all. Did you even know that?

Ok, now it's Gretchen's turn to share her and Simon's story. 

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Our world was about to be shattered, though we didn’t know it yet.  I was drying off my 12-month-old son, Simon, after a bath and noticed a bulge on the right side of his abdomen.  24 hours later we were in the ER being told our baby had cancer, one of 36 such families that day.

On May 23rd, 2011, I was as naive as anyone about childhood cancer.  A sort of friend of the family lost her son to cancer eons ago.  It was the furthest thing from my mind.  Occasionally when I was struggling with a newborn, I’d try to comfort myself with the thoughts of moms that weren’t lucky enough to be up for the 12th time with their baby because of miscarriage or some other tragedy.  I even said to my husband once or twice upon seeing an ad for the local children’s hospital, “I hope we never see the inside of that place.”  On May 24th, 2011 I’d practically move into that hospital.

Finding the bulge made my stomach drop.  Daddy wasn’t so sure it was anything to get worked up about.  But I did call the doctor the next day and was seen as soon as we could get there.  We were promptly sent to the ER.  Simon had an ultrasound that afternoon which afforded him his first nap of the day.  Oddly, I still had not been told what everyone was so concerned about.  At least, I don’t remember it.  The specific details are a bit hazy as I was having a horrible day aside from the cancer, was overheated, underfed, and exhausted.  One of the many doctors through out the word “mass”.  Then that evening he had a CT scan.  The word “tumor” was used.  I had to ask, “Do you mean he has cancer?”  I was delirious by this point and just had to make sure I was understanding them.  Yes, and it was his kidney, most likely a Wilm’s Tumor.  Thankfully, they are very treatable.

The day Simon was diagnosed

The next several days felt much like when he was a newborn.  I couldn’t think about 90, 30, or 10 minutes from now.  All I could do was go minute by minute.  We were waiting for an update on when he’d have his tumor removed and getting used to the routine of hospital life.  Vitals were checked far more often than seemed necessary.  A gaggle of doctors would show up each morning.  I didn’t know to appreciate it at the time, but thankfully there was no IV tying him down and beeping for any number of reasons.  He looked as happy and healthy as anyone I’d ever known.

On May 27th, my 38th birthday, my baby boy had his tummy sliced open and had his tumor and “kidney” removed.  The kidney was engulfed in tumor so there wasn’t much kidney left.  They also put a port in his chest where he would be hooked up to an IV all the time he would be in the hospital for chemo or fever.  Thankfully it hadn’t spread at all but was large enough that he would have to have chemo.  25 weeks of chemo, much of it inpatient.  A good part of the second half of that was spent in the hospital for fever.  When you have no immune system from chemo, fevers can mean very dangerous things and a temperature of 101 or more means a trip to the ER.  Few things would strike more fear in my heart than to have to say the words, “Simon feels warm to me.”

After surgery and the feeding tube he had to have as a part of the CT scan process

On the positive side, we were at a great hospital, Texas Children’s in Houston.  I love his oncologist, Dr. Thompson.  He did have to call a few days after the surgery to inform us it wasn’t Wilm’s after all.  It was Clear Cell Sarcoma of the Kidney, extremely rare, but Stage I and very treatable.  To this day, Dr. Thompson has always made me feel that Simon is going to die an old man.  Every time we get follow up scans, I’m told Simon is perfect. 

Now, for the less pleasant part.  Simon would have no immunity (more or less) for 7-8 months.  We totally rearranged our work schedules to keep him home with us when we weren’t in the hospital, meaning my husband and I were almost never together except for Wednesdays which were his admission days.  I’m sure I got funny looks at Target when I would lug him in his car seat onto the cart.  Surely he was too big for that nonsense.  He was unable to be around other kids or crowds to speak of.  No church.  No playing with cousins.  

You haven’t really lived until you’ve sat in a small room with your baby’s oncologist who informs you of all the potential side effects of the poison they are going to give him.  Here are examples of just a few of the side effects from his chemo.  Add to this the increased risk from more than annual CT, MRI, & bone scans until 2016.
  • Cyclophosphamide: Temporary or permanent absence of sperm (sterilization), heart muscle damage, and a new cancer or Leukemia.
  • Etoposide: Liver damage, severe allergic reaction, and a new cancer or Leukemia.
  • Vincristine: Complete stoppage of your intestinal activity, seizures, hearing loss, and optic nerve damage/blindness.
  • Doxorubicin: Severe allergic reaction which can be life threatening, severe damage to heart muscle, and a new cancer or Leukemia.
  • GSCF: Severe damage to the spleen, lung damage, and a blood disorder or Leukemia.
Simon would need medication at home.  I had to learn how to give him daily shots of GCSF to help boost his WBC count. He would also need Bactrim daily, which he hated. He needed blood transfusions several times.

Just being in the hospital was trying on the best of days.  It was almost always either my husband or me there with him by ourselves.  We had to find ways to entertain him and ourselves.  We had to pick food off his plate because we couldn’t step out to get food.  It was incredibly difficult to get him to nap.  Machines were always beeping.  Well-meaning volunteers would come in just as he’d fallen asleep offering supplies for crafts he wasn’t nearly old enough to do.  One day we were admitted for a fever I told several people he needed his shot.  He would get it in the mornings but I skipped that day since we were on our way to the ER and we could do it there when he’d get his IV.  Better to get his pokes together, I thought.  They didn’t bring him his shot until 10:00 at night, well after he was peacefully asleep.  Things like that drove me to my breaking point more than once.

Add to the list not having insurance.  Simon was on Medicaid for his first 12 months and then we no longer qualified.  His initial ER visit, surgery, and recovery would be covered.  Nothing after that would be.  Parents shouldn’t have to worry themselves sick about hospital bills while dealing with a baby with cancer.  No one should have to worry themselves sick about any hospital bill ever. 

Fortunately Simon tolerated his chemo surprisingly well.  I went to get his 1 year photos mid-June.  While we were waiting for them to process I could see his hair was starting to come out.  The next day his car seat was covered with hair.  He threw up only very occasionally.  He only had one round of chemo delayed due to low counts.

The day before Simon's hair fell out

During all of this I fell into a very bad self-pity party.  I was extraordinarily busy at work.  When not there I still had to monitor email and take calls.  I was angry at the whole situation.  I was angry at the 1:00 am phone call to say our room was ready and we better get down there or the next patient will get it.  I was angry and busy and lost and lonely.  I tried not to Google medical information.  I didn’t really even research childhood cancer in general.  I didn’t reach out to people, fellow parents on 9WT, the Hem/Onc floor.  I was just trying to get through this moment, this day.  I really regret that.

Getting his last round of chemo.  (It's ironic that it's pink ribbon based on the blog post, but my mom is a survivor and she gave it to him.)

Thanksgiving 2011
September is Childhood Cancer Awareness month.  Last year I did some research when the time came around.  I read blogs a few mommies had written whose children were cancer victims.  What I read broke my heart and infuriated me.  I am now far too aware of what the state of childhood cancer research and treatment is.  I post a fair bit about it on Facebook, though I’m sure to most everyone who sees it, the information is not relevant and is disregarded.  But childhood cancer almost always strikes without warning.  It’s not until it shows up in your child or grandchild or niece or nephew that the facts matter to you.  But these facts do matter.  They should matter to all of us.  These are our children, our babies. 

Everyone knows what the pink ribbon stands for.  Pink Ribbon Month is October, yet pink ribbons are everywhere starting in the middle of September or even earlier.  Breast cancer is awful.  I have survivors in my family.  My grandmother died of it.  But I, like so many others in the childhood cancer community, are sick to death of the pink ribbon.  We are aware.  We promise.  What about the gold ribbon for our babies in September?  Where is the outrage and awareness for these little victims?  Here are some facts:
  • 36 children are diagnosed with cancer each day.
  • 40,000 children 19 and younger are being treated every year.
  • Cancer is the leading cause of death for children under the age of 15.
  • 1 in 5 children will die within 5 years of diagnosis.
  • 1 in 3 children will not live out a normal life expectancy.
  • In 20 years the FDA has initially approved only two drugs for any childhood cancer - 1/2 of all chemotherapies used for children’s cancers are over 25 years old.
Despite all this, the most recent stats I could find for the American Cancer Society is that for every $1.00 they take in from public support, $0.0119 is directed toward childhood cancer research.  They have also eliminated all funding of summer camps for childhood cancer patients/survivors.  This is unconscionable.

 Simon and Mommy at the ocean

 We met The Aquabats as a part of Simon's Make-A-Wish trip to San Diego last month. He was terrified of them.  He's gotten very shy lately. 
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Comment away with your thoughts and support for Gretchen! Tomorrow she'll be back with some fantastic hands-on ways to get involved in fighting cancer, specifically childhood cancers. It's something we all ought to play a roll in, whether small or large. Our actions make a huge difference in lives like Gretchen and Simon's and many others fighting the ugliness of childhood cancer.
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4 comments:

Gretchen said...

Geez. That just breaks my heart. I'm glad he is okay now. Their family is in my prayers.

Gretchen said...

Thank you so much for your support and prayers :)

Gretchen said...

Before today I had never heard the gold ribbons... I am so sorry to hear of your struggle, and very glad he's doing well.

Gretchen said...

Thanks, Leah! I hadn't heard about gold ribbons either, so we both learned something new this September :)