Category: Childhood Cancer Stories 2013

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Rebecca Silton

When I first found out I was pregnant, I was working as a postdoctoral fellow for the neuropsychological consultation service at Seattle Children’s Hospital. We worked closely with kids who were diagnosed with brain tumors to help evaluate changes in cognitive function related to tumor growth, chemotherapy, radiation, and related surgical procedures (biopsy, resection, shunt placement and revisions, etc.).  We attended brain tumor rounds: the meeting where the most challenging cases were discussed by the brilliant medical team. My supervising neuropsychologist kindly told me that I could skip attending rounds while I was pregnant.

I did not realize it at the time, but I was clearly flirting with fate when I told him that learning about fatally ill children did not bother me. And so, I continued to attend brain tumor rounds, gaining an invaluable education about intractable pediatric brain and spinal cord tumors. I still carried with me a sense of my own idealism and lacked a sense of my own mortality, which also transferred to the baby in my uterus. I felt untouchable and unfazed.

When I was about six months pregnant, my husband’s grandfather passed away. Someone reminded me of their superstitious belief that pregnant women should not attend funerals.  Being extremely fond of my husband’s grandfather, I had no plans of missing the funeral because of silly superstitious beliefs. Plus, I was still doing headstands in yoga despite being quite pregnant. I was untouchable.

We moved to Chicago and I was teaching a graduate course on neuropsychology.  I was scheduled to lecture on pediatric brain tumors the week that our 10-month-old son was diagnosed with an inoperable, irremovable, infiltrative spinal cord tumor (diffuse fibrillary astrocytoma). My armor shattered and I have been vulnerable and exposed since then.

While my son carries an optimistic prognosis, there is still a lot of medical uncertainty intertwined with his prognosis, and there is no magic bullet cure for his spinal cord tumor. Frequently feeling psychologically undressed and vulnerable, I have latched on to superstitious and magical beliefs: no scheduling routine MRIs on Friday the 13th or September 11th for that matter either.  If the chemo protocol is working, then we go at the same time and same day for treatment, no exceptions.

When Eli was at risk for needing a blood transfusion due to low hemoglobin counts, I donated blood to Red Cross for good karma. I have small veins and the Red Cross attendants did not want to take my blood. I refused to leave until enough blood was drawn for donation. My karma plan worked. Eli’s hemoglobin counts rebounded, and has not yet needed a blood transfusion.  Since it’s hard for me to donate blood regularly, my husband has continued to do this.  While he has his own aversion to needles, DJ has veins the size of the Mississippi.  Also, his own transformation at the hands of Eli’s tumor has made DJ less queasy with all things medical.

In the face of medical uncertainty, I have learned to live in the present, day-by-day, moment-by-moment. Lacking a developed prefrontal cortex, it turns out that toddlers are little zen masters who only care about the present moment in which they are living, so I do my best to follow Eli’s lead. When my mind rambles too far ahead, I do my best to direct it back to the present and to simply focus on enjoying the moment and creating memories for the future. This slight of mind does not decrease the daily awareness of the closeness of mortality for all of us, but allows me to live in peace with this awareness.

Grateful thanks to Rebecca for sharing Eli’s story.  Eli is treated at the same hospital that treated Donna.  His family supports a few different charities.  One is the Young Associates Board — they host the annual run where Team Dancing Donna wears those famous tutus and donate all their proceeds to the pediatric brain tumor program at Lurie Children’s Hospital of Chicago.  Another is Project Violet that encourages individual to “adopt a drug,” a new approach to funding research for children’s brain tumors, that are often ignored by pharma companies.  Finally, the American Red Cross, as so many children treated for cancer require frequent blood transfusions.   

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Amy Aldridge

On July 24, 1994, our beautiful Sahara was born. She instantly became the guiding force in our lives. That girl was our whole world, bright-eyed and ready for anything. As Sahara grew up, it was obvious that she had many gifts. She was patient and kind with younger children, often found with a circle of little ones around her, reading to them, playing with them, teaching them. To her classmates, Sahara was the ultimate party planner, peacemaker, confidante and comic relief. To her teachers, she was a joy to have in class.

Basketball was Sahara’s sport. She wore number 21, and earned the nickname, “Hoops.”  She excelled at the game, and could drain a 3-point shot from half court when she was 11 years old. The summer of 2006 began like any other for Sahara, with many activities, travel, and basketball camps. She had experienced a growth spurt that spring, which included growing two inches taller and increasing two shoe sizes. She stumbled occasionally; we attributed it to the rapid changes in her body. We thought she was just goofing off when she would try to eat dinner with her left hand instead of her right. I asked her to please eat properly, and she told me she could not. She would “walk out” of her flip-flops because she could no longer hold them on her feet.

Her dad took her to a WNBA game in Indianapolis, and he was so touched that his girl wanted to hold his hand as they walked – until it became apparent that she needed to do it to keep her balance.  That week she started basketball camp. Her coaches said Sahara was keeping to herself, not playing much. We sat in the car outside the gym waiting to pick her up on the last day of camp, and it hit us. Our beautiful girl could no longer walk the way she used to. It was difficult and unbalanced, obviously a struggle.

What the hell was happening?

Sahara had recently gotten braces. We took her in for an adjustment after camp ended. Her orthodontist was working, then paused. He asked her to watch as he moved his finger across her line of sight. He stopped. He motioned us aside. He then floored us by saying, “I’m going to call my friend, who is a neurosurgeon. You need to take Sahara to see him and get checked out. There is something wrong. Her eyes will not track from left to right.” Whaaat?  The next day, Sahara had her first CT scan. “There is a mass in her brain stem, and it’s pretty large. I recommend you take her to a pediatric neurosurgeon right away.”

We were thrown into the terrifying world of childhood cancer. Shannon, my husband, and I were out of our minds with fear, but Sahara, true to fashion, patted me on the back and said, “Don’t worry, mom. I’ll be fine.” On Sahara’s 12th birthday, July 24, 2006, she was diagnosed with a malignant brainstem tumor. The pathology came back as stage 4 glioblastoma multiforme.

In one fell swoop, our healthy, athletic daughter became a cancer patient. We were devastated. We told the doctor we wanted to get a second opinion, perhaps from St. Jude’s. He quite rudely told us not to bother, that they would tell us the same thing. He suggested that we take Sahara to Disney World. That was unacceptable. Unsatisfied with our options, we took her home five days later, and began hashing out a plan.

We took Sahara to the M.D. Anderson Children’s Cancer Center in Houston, where she was placed in a clinical trial. We moved into the Ronald McDonald House, leaving behind our family, friends, school, work, and everything we knew. Months of chemo and radiation withered her once strong, athletic body into a fragile shell. She lost over 30 pounds, lost her pretty hair, and suffered through the sickness, the mouth sores and the exhaustion. We went home at the end of October, hopeful that an outpatient chemo regimen would somehow keep the tumor at bay. It didn’t.

In December, her MRI indicated that the tumor was growing, and the doctor suggested a new round of chemo. Sahara told us she didn’t want to go through it again, and we honored her wishes. We elected to try Plan B – Dr. Burzynski’s antineoplaston treatment, instead. The treatment stopped the tumor in its tracks, with zero progression for over 8 months.

But in August, 2007, an MRI indicated a small area of growth. Once again, kicked in the teeth. But I had plan C – a brilliant pediatric neurosurgeon at Stanford, Dr. Michael Edwards. He asked how fast I could get her to California. We arrived two days later. He operated, removing 70% of the tumor. Sahara was the youngest person ever admitted to Stanford’s inpatient rehab. She was their little star, and after a month, she walked again. We took her home on October 25. She started outpatient rehab and was doing really well. We were making plans for her to return to school in January.

We had so much hope.

Eleven days later, on November 5, after a strenuous afternoon of water therapy, we had just gotten her comfortable in her hospital bed, which was set up in our living room. I had to run to Walgreens to get one of her prescriptions refilled. I rushed out the door without kissing her goodbye, which was something I never did. She told her Dad she was going to take a nap.

When I got back, about 20 minutes later, she was gone. Just like that. After 17 months of fighting and hoping and praying, she was simply gone. And I wasn’t with her when she passed. It took me years to work through that guilt. Shannon was in shock because he’d been with her and thought she was just sleeping. There was nothing we could have done. Sahara’s little body was worn out, and her heart simply stopped beating. When the kind men from the funeral home came, they cried. How I wish I had not heard the sound of the zipper as they prepared to take her away. I can’t erase the sound from my memory.

There were nearly 800 people at Sahara’s memorial service. Many people spoke; we all cried. I read aloud a note that I’d received from one of her friends. It said that because of Sahara, she stopped cutting herself. Sahara had talked her through some really hard times, and she encouraged her. I didn’t know about this, but it was so like her to try to help others. That was our Sahara. She was love, she was joy, and she was hope, bundled into a bubbly, vivacious, laughing little girl. The depth of her loss is infinite.

After a period of time, we decided that we were really not finished being parents yet, and that we were ready to have another child to love. Not to replace Sahara, as no one could, but to give a home to a child that would need one, and to share our lives and love with that child.

In September, 2010, we adopted an amazing baby boy who brought light to where there had been much darkness. Sahara’s love shines brightly through his big blue eyes. He has quite literally made life worth living again, and we are so grateful for the opportunity to be his parents. People say he looks like Sahara, and they are right. It’s uncanny sometimes. He has her mannerisms and wicked sense of humor. We like to think that she hand-picked him just for us. What a blessing!

Since Sahara’s death, we have channeled our grief into research fundraising, and have raised over $100,000 since 2007. Our annual Hoops for Life 5K has grown into the largest in our area, and benefits the Pediatric Brain Tumor Research Program at Stanford University.

This year, motivated by the efforts of Laura Luterewych and Sheila Quirke in Illinois, I worked with Missouri Sen. Wayne Wallingford to pass Sahara’s Law. This law established a check box on the Missouri state income tax return form, allowing taxpayers to donate $1 or more of their refund to the Pediatric Cancer Research Trust Fund, with all proceeds going to CureSearch for Children’s Cancer. It is my hope that other states will recognize the need for greater research funding and pass similar legislation.

If you would like to read the full account of Sahara’s battle, you can visit her blog. It is a love story, really…one that continues in our lives every day. Every time we encounter the number 21 (which happens frequently), we feel that she’s giving us a wink, and letting us know that she’s still with us.

In a sea of pink, it’s very hard to find the gold. Please show your support for Children’s Cancer Awareness Month in September. Thank you, MTM, for giving cancer parents a voice, and for being such an amazing advocate.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Pauline Grady

Ok, I’m laying it out here on the table God.  This test…this test that you insist on making harder and harder, it’s killing me.  I put on a smile everyday.  There are many times I could just sit in the middle of the isle at Target and cry.  Not because I couldn’t find the sheets I was looking for or the new shower curtain I want…no.  I just want to sit and scream and see if the world stops around me.  I know it’s not going to happen, but it would be really great to see the look on everyone’s face.  Yep, for shits and giggles…I think I might do it.

Listen, I know you are there God.  I know you hear me when I pray to you.  I know you hear me when I am crying and screaming in my room when nobody else is in the house.  When it’s just you and me.  I know you hear me begging you to continue to guide me in the right direction, to make the right decisions so that we can come out of this on top.  I know you hear me.  You have to.  There is nobody to distract our conversation.  The kids aren’t asking me for string cheese and juice boxes and my husband isn’t nagging we about the five loads of clothes that have been sitting in our room for two weeks.

I had read something a while ago about how God chooses certain moms to be the caretaker of a sick child, children with cancer in particular.  I feel honored that you chose me, thinking I am strong enough to do this, but really God…there are some days I am literally hanging off a cliff…I mean with like one finger keeping me from falling to the absolute bottom.  Sometimes I feel like letting go because I feel like the pain of hitting the bottom wouldn’t be nearly as bad as watching Sam go through this shit.  The pain wouldn’t be nearly as bad as watching my friends struggle through there days because they lost there child to this beast.  Sometimes I wonder what the fall to the absolute bottom would be like.  Would I reconsider and try to catch another cliff on my way down, or would someone try to catch me?

I hope you don’t get angry with me God.  I haven’t gone to church in a while.  I feel more comfortable talking to you without a bunch of people around.  Frankly, I am not to happy with the church we “attend.”  I don’t like when a priest tells me that I have to make an appointment with his secretary to meet with him.  I don’t ever have to make an appointment with you.  Someone who supposedly preaches your word should not need to make appointment with people that need them.  So, I will stick to my personal time with you.  No appointment needed.

I’m tired God.  Really tired.  I know you say when we are at our weakest that you carry us.  You must be really strong, because you have been carrying me, Sam, Rick and Eli for a while now.  How ’bout a little break for the both of us?  That way you can let us walk a little.  Weight off both our shoulders.  We get a break from all this craziness, and you can catch your breath from carrying us.  This way I can look down and see two footprints because I know you will be right next to us.

Okay, God.  That’s it for tonight.  Make sure my babies sleep good tonight.  Eli worried a great deal about his brother today, and Sam just isn’t his self.  Protect my husband.  He works so hard and worries about myself and the boys all the time.  I’ll talk to you soon.  When the house is quiet.  No appointment needed.  Amen.

This post first appeared in Pauline’s blog, chemoanddonuts, in June 2013.  I highly recommend it as a slice of childhood cancer reality.  Her son, Sam, is in treatment for leukemia and is on a countdown to finish that treatment in September 2014.  

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.