Category: Guest Bloggers

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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.   

By Jessica Edenfield

I knew that children got cancer too, but I couldn’t imagine my child getting cancer until it happened. In one day I went from “I can’t imagine,” to “Oh. Wow.”

Silas, my youngest son, was just 3 1/2 years old when he was diagnosed with Hepatoblastoma, a rare childhood liver cancer. Literally only about one in a million children are diagnosed with this deadly disease each year worldwide. There are few known risk factors, and my little Silas had none of them.

Silas was a happy boy, full of energy and life. He loved his brothers, sea turtles, Jesus, and the color gold. Gold wasn’t always his favorite color. That happened because of the cancer. You see, gold is the color for Childhood Cancer Awareness Month and the color of Heaven.

We fought Cancer for thirteen months with chemotherapy, multiple surgeries, and even some natural remedies. Nothing worked. The beast shrugged off everything we threw at it and continued to take over my little boys body. Thirteen months after he was diagnosed, they told us there was no “curative treatment.”

It took me a few minutes to understand what they were saying.

I was in the room with three doctors telling me that although they had removed all obvious tumors only a month before, my now four year old little boy had nearly fifteen new tumors and they did not know how to cure him. My husband and Silas’ brothers were downstairs waiting for us to be finished with the appointment. This was not the news we were expecting.  This was just a follow up visit! We were totally blindsided.

When we told Silas that the doctors didn’t know how to make his cancer go away, and we thought that maybe God was getting ready to take him to Heaven, he said “And get my new body!!??!  Yay! I can’t wait to have a new body!” He was beaming ear to ear smiling. There was such joy in his response, he was not afraid.

We had always spoken to Silas about Heaven, since he was a baby. We had many more conversations about it as his time to go there grew closer. We answered his questions openly and honestly. We told him what we knew of Heaven and when we didn’t know, we told him he’d have to find out when he got there. He said his favorite things about Heaven were the streets made of gold and that he would get a new body in Heaven, a body free from cancer, pain, suffering, tubes, and IV lines.

One day, while lying on my arm in bed, Silas asked me to tell everyone “to paint their nails gold for childhood cancer awareness.” I posted this simple message on his Facebook page. A simple request, surely many people could do this.  I had no idea this idea would take off! Within a day people started sending me photos of their fingernails and toe nails painted gold — men, women, and children! Even a few dogs and horses sported gold! People said “I painted my nails gold for Silas.”

I told him this and showed him pictures, but his reaction was not what I expected. He shouted “NO! Not for me! I am going to Heaven soon and I won’t have cancer anymore, they have to paint their nails gold for the other kids with cancer!” I shared what he said and after that thousands of people signed on to his Facebook page and painted their nails gold, making many more people aware of childhood cancer.

I think that God took a lifetime worth of grace, compacted it, and gave it to Silas all at once for his not quite five years of life. He was wise beyond those years and he really lived — more in his short life than many have lived in 100 years! Everyone who met him loved him, even many who never met him, but heard his story.  He had the most contagious smile.

Silas lived 2 1/2 months after the doctors said they could not cure him. Those months were filled with much joy for our family, but also much heartache as we knew we would not have him for much longer. It hurt worse than anything to see him in so much pain, to see his body being taken over by the cancer. I will never forget the amazing smile that came across his face when I showed him his package of nail polish and the bottom of the bottle labeled “Silas Gold.” His eyes lit up and he smiled so brightly as he said “That’s my name!”

Rocking in my arms, he took his last breath just ten days before his fifth birthday. We celebrated his birthday several times over those last couple of months, but he always told me “My real birthday is going to be at home in Heaven.” He knew.

Silas cannot be replaced. My arms will always ache for him. It has only been a little over a month since he went “home to Heaven,” as he said it. The tears still fall.

I think there is a cure out there. I think there is a reason so many children get cancer. We just do not have all of the answers yet. Silas is cancer free now, running down the streets of gold in his new Home in Heaven. But I hope and pray that you never have to know the pain of fighting cancer with your child. Be aware. Kids get cancer too.

Awareness. Support. Funding. Cure. Hope.

My generous thanks to the Edenfield family, for sharing Silas’ story here. Their grief is fresh and will change in time, but never go away.  Kraft och omtanke. 

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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.   

By Melina Brown

In August 2004, life was looking up for me and my children. I was nearing the end of a long divorce process, I had just saved up enough money to move into a new place and my kids were healthy, beautiful and thriving.

My middle child, Levi, age 4, began having some headaches that summer. Nothing too bad, just enough to worry his Momma. I took him to his pediatrician, who diagnosed him with a sinus infection and prescribed some amoxicillin. When the headaches continued, I took him back and he received a stronger antibiotic.

I point blank asked his doctor “Could he have a brain tumor?” (partially because my grandmother had passed away from a brain tumor just hours after she was found unresponsive in her apartment and partially because I am a grade A worrywart). I was assured that of course it was not a brain tumor – he would have many more symptoms than a few headaches!

Fast forward two weeks – my sweet Levi lay in a bed in PICU, diagnosed with medulloblastoma, a highly malignant brain tumor that had already spread to his spine. A follow up visit to another pediatrician ended up being a 4 week hospital stay – two weeks in PICU and two weeks on the pediatric floor. The surgery to remove his tumor left him mute and paralyzed. All he could do was scream and scream and scream. I cannot even begin to imagine how scared my baby was. A long year of treatment was planned – six weeks of radiation to his brain and spine, followed by harsh chemotherapy.

Of course, my first thought was of Levi and his fight. But soon after, other worries began creeping in. Who would take care of my other children? How would I pay my bills? My house was half packed – how would we get moved and unpacked before Levi’s treatments would begin? My car was a 10 year old wreck that needed new tires, would it last the 50 mile daily trip to Levi’s radiation treatments?

When I look back, what stands out the most is the kindness of people. We hear all the time how the world is going to hell in a hand basket, but I have found that people are truly good, for the most part:

• My babysitter kept my two year old daughter Kayleigh for two weeks for no pay while Levi was hospitalized. My parents kept her the next two weeks.
• My son Ethan, who was 10, moved in with his friend’s parents for the entire month of September. They took care of him like he was their own child (and still do!).
• My high school friend, who saw me at the gas station, crying hysterically, the night Levi was diagnosed (I had ran home for some clothes). She rounded up two other best friends from high school and they stayed with me the entire day while Levi was in surgery.
• My friend who came to my new home and unpacked boxes for me.
• The sweet lady who was going through radiation at the same time as Levi, who brought him a different toy every single day.
• The senior citizen at Hardee’s who came over to talk to us one morning after Levi finished his radiation treatment. He asked if Levi was sunburned and when I explained that it was damage from radiation to treat his brain cancer, he cried and prayed for Levi right there at our table.
• The stranger who walked up to us one day in McDonald’s and gave me $20 to pay for our meal.
• Our pharmacist/friend , who paid to have my car fixed and showed up every few weeks with diapers, toiletries, and other goodies from Sam’s Club – all while she was fighting cancer herself.
• My ex-husband’s former boss, who brought us a dump truck load of gravel to extend our driveway, so I didn’t have to carry Levi through the mud and snow that winter.
• The newspaper reporter who wrote an article about Levi while he was still in PICU. This story resulted in enough donations to allow me to stay home with Levi throughout his entire year of treatment.
• The DMV clerk who insisted on paying for our handicap decal.

Levi is now 13 years old. He loves PlayStation and pizza. He attends a school for children with learning disabilities and was held back two years. He has relearned everything he lost, with the exception of jumping on one foot, but he’s working on that. For the past three years, he has won the “Most Kind to Others” award at the end of the school year. I would say he learned that the best way possible – by example.

Melina, Levi’s Mom, is one of the original St. Baldrick’s “46 Shave for the Brave” Moms — all women whose children were diagnosed with cancer. In September 2010 Melina appeared on the nationally televised Stand Up 2 Cancer event with her newly shorn head. She organizes an annual St. Baldrick’s event with the support of the Virgina Tech Hokies. You can find her fundraising page 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.