Chronicles of Marnia

September is Childhood cancer Awareness Month. I'll be posting about a child we met through my daughter Peyton's journey through cancer from 2003-2004.

I also dedicate this series to my brave little fighter Peyton, who this month, has reached the milestone of 5 years as cancer-free. In the cancer world, making it to 5 years is a near-guarantee her original cancer won't come back. But the ugly secret with childhood cancer is that secondary cancers often come back, sometimes as soon as 10 years from the original diagnosis. Ironically, these secondary cancers are caused by exposure to chemotherapy and radiation used to stop the original cancer.

As you read about the kids I'll profile, please pray for less invasive cures as research gets better and better. Please pray for the funding of the research, and please pray for the families of the kids effected by the devastation cancer can bring.

I wrote this post originally on November 18, 2004...

Blessed be Your name, in the land that is plentiful, where Your streams of abundance flows, blessed be Your name...


As you can tell from the last journal entry, we've recently had to deal with too many special people in our lives paying the ultimate price for their disease. It gets more and more painful everyday to lose one child after another to a disease that MUST be stopped.

And blessed be Your name, when I’m found in the desert place, though I walk through the wilderness, blessed be Your name…

When Dane and the girls and I started down this road together last year, Peyton was our introduction into a world I scarcely knew existed--childhood cancer. I always assumed it was incredibly rare, and that all children had leukemia. It never really occurred to me that kids get cancers that are far more aggressive or deadly than even the scariest ALL or AML. But as we made friends through the hospital and Caringbridge, I realized how very wrong I was. Jakey Bear was our first Caringbridge friend that we lost, and we lost him to a vicious brain tumor that as of now, has no cure but Heaven. It was a cruel wake up call that cancer does kill children sometimes. Because of Jake and his site, we went on to find many, many other friends, and slowly, we have now started to lose some of them. In the last several months we said goodbye to Paige, Miranda, Ian, Connor and Cheyenne--all to cancer (see links below). I never got to meet these children, I just had the privilege of reading their stories, praying for them, and occasionally exchanging heartfelt emails with their hopeful, yet fearful parents. Frankly there have been many, many other kids I've kept up with and then lost, but sometimes I would find them as they were end-stage and it was too painful to list them on Peyton's page only to lose them a very short time later.

And blessed be Your name, when the sun‘s shining down on me, when the world‘s all as it should be, blessed be Your name..

Next came a tougher wake up call. Many kids listed on this page are now personal friends of ours. We get together at each other's homes, we talk on the phone, we share our souls--we are friends in the purest sense of the word. And they all have or had cancer. Dane and I love Weston, Griffin, Logan and Courtney as if they are our own. And as people who love them in a way as if they belonged to us, we won‘t stand to lose any one of them to cancer. And so, with God's guidance, we intend to do what it takes to support research to effectively treat and ELIMINATE cancer from this planet. It's no longer about being satisfied with seeing Peyton in remission, we want ALL children in remission, and to stay there.

And blessed be Your name, on the road marked with suffering, though there’s pain in the offering, blessed be Your name…

Dane and I have seen the grieving faces of parents as they buried their beautiful, warrior of a daughter. We have held the hands of parents whose child is in the midst of an invasive Bone Marrow Transplant and its horrible side effect in hopes of saving his young life. We have looked into the eyes of parents who are watching their child stare down the same cancer for the third time and seeing their fear and knowing that they wonder if this battle will be the last. We have listened to the anguish of parents who were so grateful their child has beaten his cancer but who watched him suffer through the trauma of treatment and angst over the long term side effects that are inevitable. We have seen a remarkable and beautiful young woman put her dreams of college, and all that goes with that experience, on hold while she battles her cancer--again. And make no mistake, ALL the parents of these precious fighters live and breathe a reality of what cancer can do to a young body and mind. Two of these loved ones are fighting relapses, which I know is every cancer parent’s worst nightmare. And we can't take it anymore.

Every blessing you pour out, I’ll turn back to praise. When the darkness closes in Lord, still I will say; Blessed be the name of the Lord, blessed be your name. Blessed be the name of the Lord, blessed be Your glorious name

Childhood cancer: Did you know that 1 in 330 children will be diagnosed with some form of cancer by age 20? Let that thought sink in. But now think about this; children get cancer when their brain and body are at their most critical development phase. Many children and young adults are subjected to aggressive chemotherapy and oftentimes radiation, on a body that is still trying to grow and in a brain that is still developing. Pediatric Oncologists will be the first to tell you they are unsure of all the long term effects of cancer treatments in kids. As one of Peyton’s doctors put it, “I don’t know what the full spectrum of long term effects for Peyton’s future is, given the aggressive level of treatment she’s been subjected to, but I know that we’ve given her the best possible treatment to help ensure that her future will exist”. We agree that the level of treatment Peyton received was in her very best interest, and we hope God will allow her to grow old and one day barely recall what she went through medically, but should saving her and all the others like her have to come with a trade off of future harm, or for many, potentially deadly consequences? All of these kids have already sacrificed a normal childhood, but now they are left to grow up with altered bodies, neurotoxicity, and yes, even higher risk for secondary cancers later in life due to the high doses of chemo and radiation. How's that for some warped irony?

You give and take away, You give and take away…

Adult cancer: In contrast, 1 in 3 adults get cancer, (77 per-cent of on-sets occurring after age 55). Given the sheer numbers of people that effects, that does make adult cancer research seem more critical of our research and money. But does that really make sense? Should relieving cancer victims, of any age, be a contest when it comes to money and research opportunites? Shouldn’t we all benefit from research, not just those in the “majority”? The last two weeks have been enlightening, and I dare say, a betrayal, to Dane and I. Organizations we trusted to use our money, and more importantly, our daughter’s story, to wage war on cancer are not treating childhood cancer with the same level of research funding as adult cancer. To us, that is nothing short of unacceptable. How do you justify spending more money on adults based on the amount of people afflicted. At least the benefactors of this cancer research have experienced adulthood, many kids in the childhood cancer world don't see high school. One organization I contacted listed the “big 4 cancers” if you will, they funnel the bulk of their donations to: Colon, Prostate, Breast and Lung. Every one of them are vicious cancers and every one of them deserves funding to eliminate them and improve treatments for current patients, but these are almost exclusively adult cancers. And while there are always exceptions, most, but not all, are brought about by lifestyle choices. Childhood cancer is dominated by leukemias, brain tumors and cancers of the nervous system, the lymphatic system, kidneys, bones and muscles . Childhood cancer is the 6th most common form of cancer in the entire cancer category (adult and children) but it is receiving less than 5 percent of the overall funding taken in by the organization I spoke with. And that is where the betrayal set in for us.

My heart will choose to say, “Lord blessed be Your name”…

I strongly encourage everyone to donate time and money to researching a cure for cancer. It’s all destructive and brings on so much fear and sadness, and it must be stopped. But God has given Dane and I a heart for CHILDREN with cancer, and that is where our loyalty will lie from this point on. After much research and prayer, Dane and I have found an amazing organization dedicated solely to funding childhood cancer. We encourage you to visit CureSearch and start getting involved. Our friends and families and cancer patient families are now aware of this site and many are already signing up to get involved. There are numerous ways you can help, the most immediate being donations. There is also an online gift shop where you can purchase art created by childhood cancer fighters and survivors. You can sign up to become an advocate and start an emailing or letter writing campaign to our government officials and insist childhood cancer be funded as adequately as adult cancer. God has also laid on my heart many, many times about the importance of blood and platelet donations. ALL of “our kids” have needed blood and platelets while in treatment, so this hits close to home for me. I also strongly encourage you to become a bone marrow donor. For transplant kids, it is literally a matter of life or death to receive healthy donor marrow. If you are pregnant, consider donating your cord blood to save a life. Go to the National Marrow Donor Program to find more information about cord blood donation and marrow donation.

Blessed be the name of the Lord, blessed be Your name. Blessed be the name of the Lord, blessed be Your glorious name.

And as always, we know that this cancer and what it does to not only the victims, but those who love them as well, will never go away until we commit to pray it off this planet. The Bible tells us, “Ask and it will be given; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; he who seeks, finds; and to him who knocks, the door will be opened.” (Matthew 7:7-8, NIV) We just need to be asking. All of us. And God’s Word promises us, it will be given. Cancer is a big, powerful disease, but we have a bigger and merciful God and His son, Jesus, is the ultimate healer. “What is impossible with men, is possible with God”. (Luke 18:27, NIV). Now go. Write checks, register to donate blood, platelets and marrow. Become an advocate for a child whose voice is not being heard in the cancer funding world. And pray…humble yourselves and pray.

Marni



Childhood cancer research is woefully underfunded in comparison to adult cancers. But there are research hospitals who are making huge strides in curing cancer, and in the meantime, trying to make the treatment safer for the kids who endure it. Personally, my family and I help fund 3 organizations who are making a real difference in fighting childhood cancer. If you want to help, go to:

Curesearch,
St Jude Research Hospital,
Children's cancer Fund and Children's Medical Center of Dallas


Sometimes, all you can do is make a child smile to help them forget their illness or give families the support they need. We're big fans of these organizations as well:

Make A Wish, Habitat for Hope and Candlelighters Childhood cancer Foundation

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