Aurora’s Story: Buddha Belly and a Mother’s Intuition

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Kelly Wadle 

After a long, grueling twin pregnancy, I gave birth to Parker and Aurora on July 31, 2014 at 35 weeks gestation. They were perfect. And my family was complete. I had three beautiful, happy and healthy children. So I thought.

Everything was going along smoothly until shortly after the twin’s 12 month check up. Shortly after this wellness visit, I started to notice that Aurora had quite the distended belly. We laughed and joked and often called her “Buddha belly,” thinking most babies have big bellies, right? But something just wasn’t right. Her belly was pretty hard. Many weeks went by and I thought Aurora had a gluten or food allergy. I thought I would mention it at the twin’s next well visit at 15 months. I wasn’t too worried.

Aurora and her "Buddha belly."
Aurora and her “Buddha belly.”

However, on Monday, November 17th, 2014 I had come home from a long hard day at work. I caught a glimpse of Aurora out of my eye. There she stood, big ol’ smile on her face, with her shirt pushed up over her belly. Her belly was the largest I have ever seen it. I grabbed my camera and took a picture. Something was wrong. Aurora did not have a fever. She was eating, peeing, pooping, everything just as she should. What was wrong with her, I didn’t know. Perhaps a severe food allergy. I didn’t know, but what I did know was that I needed to get her to the hospital. They call this “mommy intuition” and I get the chills just wondering about what was guiding me this particular day.

Imagine how dumb I felt when the doctor on call at Aurora’s pediatrician’s office asked, “Does she have a fever? Is she vomiting? Is she crying? Is she having any issues eating / drinking / peeing / pooping?” My answer to all of this was “No.” I thought for sure the on-call doctor would say just wait until the next well visit (within a week) and we will run some blood work. But this doctor did not say that. Instead, she said “Kelly, I can tell in your voice that something is wrong. Head on over to Beaumont.” I did just that.

I looked my husband in the eyes, teared up and told him I had to go. “Stay here with the other kids.” I had no idea that this day would change our lives, forever.

I got over to the after hours clinic. Once we arrived, Aurora’s belly didn’t look as distended as it did while we were at home, just 30 short minutes ago. So odd I thought. They are really going to think I am crazy. Thank goodness I took that picture on my cell phone.

The nurse measured Aurora’s belly and within minutes a doctor entered our room. She told us that they would be transporting us over to the ER. They loaded Aurora and I up in a wheelchair and whisked us away to the ER.

We were there for a very short period of time before a doctor came in our room. She looked Aurora over then sat down. This is a conversation I will never forget. The attending physician said “so, mom, what is your worry?” Oh no. She for certain is thinking I have lost my mind. Until, when I started to speak, I started to cry. I said “I don’t know. Maybe a growth?” The doctor nodded her head. “I agree with you. This is not good. I am not going to sugar coat anything. You might not get all your answers tonight, but we will be admitting you.” What I didn’t know was at this time, the doctor could physically see and feel Aurora’s tumor on her right kidney.

They send us for an abdominal x-ray. The x-ray revealed that Aurora had what was suggestive of a very large mass in her abdomen. Aurora would need an ultrasound next. There wasn’t a pediatric radiologist on call, so we were admitted until morning.

That night, minutes after being admitted to the pediatric floor, we were being whisked away to the PICU. Aurora had dangerously high blood pressure readings. What time would reveal was that Aurora’s tumor was pressing on her IVC, causing the elevated blood pressure.

After the ultrasound, Aurora had to have a sedated CT scan. The CT scan confirmed that Aurora had a tumor in her right kidney that was almost the entire size of her abdominal cavity.

I will never, ever forget this day. A literal team of doctors were in our room to tell me,”We are so sorry. Your daughter has cancer.” The type of cancer Aurora has is called Wilm’s Tumor. It is a tumor that originates inside either, or sometimes, both kidneys. Aurora’s scans had showed no signs of metastases to the heart, the liver or lungs. Those are the common places Wilm’s will spread.

On November 20th, 2014 Aurora had undergone extensive surgery to remove the tumor and entire right kidney. In trying to spare other organs, the surgeons knicked the tumor causing tumor spillage. That bumped it to Stage III.

On December 1st, 2014 Aurora began a round of six consecutive flank radiation treatments. We had to arrive early to the hospital every day for IV sedation. What an awful week that was. Then, once her radiation treatment was completed, it was time to focus on her 25 week chemotherapy plan.

It was a grueling time. Hospital stay after hospital stay for viruses, fevers, blood transfusions, and so on. Aurora had even experienced what one neurologist called “chemo induced toxic leukoencephaly” (brain damage cause by chemo).  nother neurologist called it “post infectious ADEM” (brain damage caused by an infection). Either way, my daughter couldn’t walk, sit and/or stand by herself. Luckily for us, this brain damage was reversible. At one point we had a scare. They found a 3 cm mass in her tumor bed. Luckily, after more scans and finally a core biopsy, we learned that it was a hemostatic agent used during her surgery.

Aurora finished her last round of chemo on June 8th, 2015. She had her port removed on August 10, 2015. She will be scanned every three months for the next two years due to the fact that Wilm’s tumors have a chance of spreading to the heart, liver, other kidney and lungs.

We still have a life long journey ahead, as no one really knows the life long effects the chemo drugs have on these small children. The doctors are unable to tell me if my daughter will suffer infertility due to the area in which she had radiation.

We have learned to live one day at a time, sometimes, one hour, one minute at a time. And for now, Aurora is NED (no evidence of disease) and we’ll take that!

AURORA1

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Kelly Wadle is a plain old mom, who has been blessed with a gorgeous 7 year old daughter, Belle, and two incredible 2 year old twins, Parker and Aurora. She continues to be inspired everyday by her children and all the other families who are fighting or have fought the cancer beast.   Kelly lives, works and plays in Royal Oak, Michigan.

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Sam’s Story: The Guilty Milestones

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Pauline Grady 

The guilty milestones.  It sounds crazy, I know.  But let me explain.

I feel guilt.  A ton of gut wrenching, tear producing guilt.  It’s this God awful emotion that is confusing, yet justified, all at the same time.  What is this guilt about you ask?  My child survived.  That is my guilt.  It’s a warped form of survivors guilt.

I don’t expect anyone on the “outside” to understand, but I am fairly certain that those on the “inside” do understand.  When Sam was diagnosed with cancer, my very first thought was, “he’s going to die.”  I prayed, I begged God not to take him, I held him close to me many nights watching him breathe, crying, pleading for him to never leave my arms, the ones wrapped around him.

What I did for those 3 1/2 years my son was in treatment is exactly what every cancer mom does.  We all beg.  We all plead, yet some of us make it to the other side, still holding our children, when others cannot.

Why?  How is that fair?  This is where my guilt comes in.  Why, if I am doing the same thing that other moms are doing, did Sam “survive” and their child didn’t.  I don’t have an answer, I don’t think anyone does, but you can clearly see how this might fuck with your emotions.

While packing up the boys’ back packs tonight, an overwhelming sadness came over me, as it has in the past few years.  I get to pack Sam’s back pack, I get to make his lunch, I get to tuck him in tonight, I get to put him on the bus tomorrow.

I’ve been asked all week if I am excited about the boys starting school.  Of course I am, I need a break.  I am looking forward to going to breakfast with my friends.  But breakfast will come after I put the boys on the bus and go back inside my house and cry for a while.  Cry tears of happiness that Sam has made it to first grade, tears of sadness for the moms that can’t put their kids on the bus and tears from the anxiety that I feel every single day that one day this monster will come back.

Sam on the soccer field.
Sam on the soccer field.

September 2nd marks one year that Sam will be off treatment.  The farther away we get from his last treatment the more likely he is to not relapse.  He looks healthy, his numbers have been great and he is generally thriving.  That is my short answer when people ask me.  My long answer is, he quit soccer because his legs hurt too much and his stamina still hasn’t returned; he’s angry and nothing holds him back from letting you know; he has anxiety that ebbs and flows, and we are still dealing with stomach issues.

The really long answer I’ll save for therapy when I’m ready to go.

In the past year I’ve had a lot of what I like to call “epiphanies.”  Oprah used to call them her “ah ha” moments.  The dust continues to settle and I am seeing more clearly than I ever have before.  I think I am where I am supposed to be or at least heading in the right direction anyway.

September is Childhood Cancer Awareness Month.  The color is GOLD.  The inequality as far as funding for childhood cancer as compared to other cancers is pathetic.

What will you do this September?

SAM1

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Pauline Grady is a 39 year old mom of 2 living in Northeast Pennsylvania. She is happily married to her husband Rick and spends her down time cooking, writing and garage saling.  You can read her words at her blog, Chemo and Donuts.

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Theo’s Story: After the Storm

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Karla Helbert

Early in September 2005, I flipped on the radio as I drove yet again the three mile route between home and hospital where our three-month-old son lay, intubated, in and out of consciousness, head stapled shut. Distractedly, as I did most things not involving my presence at our son’s bedside, I listened as NPR reported yet more devastating news of Hurricane Katrina ravaging New Orleans and her people.

Pain and sadness welled in my heart, my thoughts turning toward the hundreds, maybe thousands of homeless, missing, injured, dead, and returning quickly to my child, my personal horror overwhelming any empathy I could hold for the people of Louisiana. Blinking through tears, I wondered how I would feel about this if Theo weren’t lying in the hospital right now? How awful would I feel if this had not just happened to us? I found I did not have the capacity to hold my own terror, grief and sadness as well as the pain of thousands of strangers.

Theo in hospital.
Theo in hospital.

A hurricane of immense proportions had just made landfall into our lives as well.

Two weeks earlier, on Saturday August 20, 2005, my beautiful three-month-old son Theo, our first born child, began seizing and projectile vomiting. Ice cold dread snaked its way up my spine as I watched him struggle, one eye open, the other closed, one hand grasping, the other limp. Something was wrong with his brain.

After countless traumatic hours in two different hospitals, he was diagnosed with a brain tumor, a choroid plexus carcinoma, one of the rarest and deadliest of pediatric brain tumors. One in 275 million children annually will be diagnosed with a choroid plexus carcinoma. The survival rate even as long as 5 years is “dismal.” No child makes it to adulthood. As one of our oncology team members put it when she delivered the news, “It’s like winning the lottery, except backward.”

Diagnosis day ten years ago was one of the most traumatic days of my life. What came after was hard, excruciating, painful, heart-wrenching, all of those things—but far less trauma-filled. When the storm for which you are wholly unprepared makes first landfall and all your levees break, it takes a feat of preternatural strength just to stay above water.

For a few years, because it was important to me, August 20 was a day of observance. We returned to the PICU bearing gifts of donuts, fruit, chocolates, goodie bags for nurses we loved dearly and who took such good care of our baby. Then came the year when I just did not want to go. I didn’t want to stand in that hall one more time.

Still, I observed the day. I took time to reflect, to cry, to consciously re-live particular moments forever frozen in my memory that if not given attention, I knew, would come far more often unbidden, stirring up debris, making my grief-suffused life even more difficult to manage.

Then came a year when the day quietly passed without remark or observation. Last year, I realized the 20th had come and gone without my noticing until the following day. I was surprised, but felt okay about it. At nine years, I was somewhat acclimated to the ebb and flow of grief. I had become more adept at accepting how it came and went. I did my best to be with it when it showed up; I tried to be gentle with myself when I felt I somehow wasn’t doing it right.  Sobbing in the kitchen last Christmas I shocked myself by saying to my husband, “What is wrong with me? I shouldn’t still be feeling this way!” Really? I should’ve known better than that. I do know better than that.

Theo, one week prior to diagnosis.
Theo, one week prior to diagnosis.

This year, mid-August, I began feeling weepy, emotional. I was deeply missing my child, more consciously, it seemed, than usual. Writing the date at the top of a note, 8/20/2015—it hit me. My body knew this anniversary was coming before my mind recognized the fact of the date. This year, it needed my full attention.

I took time with the day. I sat and read many things I wrote a decade ago in 2005. When my child was still alive, when he was still dying. For a good couple of hours I sat and cried, missing him, longing for him. I cried for what my child endured, for what I endured, for what my husband endured. For what we are missing. Always.

I heard today, again on NPR, another story on this tenth anniversary of Katrina. Interviewees spoke of division in the hearts of some citizens of New Orleans. Some want to celebrate, while many others feel celebration is not warranted, that the date of devastation is nothing to celebrate, to even acknowledge. The destruction was so great, the losses so immense. There is still grief at the loss of life, the trauma, the struggles, the pain they have endured and will continue to endure.

The city will never be the same. Yet they are still there, the city is still standing. Looking back reminds us of where we’ve been, what we have come through, how we have changed, and what has not. Recognition and remembrance are important, even necessary, and possibly, at times, unavoidable. Perhaps the significance of the passing of a decade has some particular resonance in our psyches.

Another metaphor describes grief as waves. As we learn to float, the waves eventually come with less force and violence. It isn’t really about the passage of time; it’s about the continued practice of being with the pain in a thousand different ways. It’s not healing; it’s learning to grow with the grief, the changes, as part of who we are now.

The pain becomes less searing, this is true. And while I don’t like to say that it gets better, with greater space between waves, with more room to breathe and float, it is different. It is in many ways better than the gasping and fighting and struggling and crashing that early days and years hold.

This grief never ceases to amaze me. And since my love for my child also never ceases to amaze me, I suppose I should not be surprised that those things are commensurate. I have this anniversary been sitting with my grief, a familiar companion now, allowing it to be.

Theo, Mom, and Dad
Theo, while on hospice care, Mom, and Dad.  Photo credited to Patricia Lyons.

Ten years ago my life was irrevocably changed. It will never be the same nor will it ever be okay that this happened. Yet I no longer struggle. My love for my child is the strongest force on Earth. My grief exists because of my love for him. I let it come in whatever form it wishes to take. It is still not easy.

Someplace along my personal time space continuum, a Category 5 storm is still making landfall into my heart, tearing apart the very foundation of who I once thought I was, what I thought my life would be. For now though, now, in this moment, my levees hold.

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Karla Helbert is a bereaved mother, psychotherapist, yogini, reiki practitioner, aromatherapist, crystal collector, and award winning author. She has a private psychotherapy practice in Richmond, VA where she lives with her husband Jamie, their daughter Lula and the betta fish Captain Starr. She is a MISS Foundation chapter facilitator and certified Compassionate Bereavement Care provider. Karla’s newest book Yoga for Grief and Loss is available October 21, 2015 from Singing Dragon Books.

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