Chronicles of Marnia

In this journey through cancer, we met and loved some of the most remarkable people. God blessed us with Logan, Weston, Elisha, Griffin and Courtney. We came to love them and their families as our own.

Weston

Elisha

Griffin

Courtney (with Peyton)

I'll never understand (while I exist in this body) why God needed to take some of these kids we loved so much (Elisha, Grifffin and Courtney). But I rejoice I'll see them again because they left this earth knowing Jesus as their savior. I also rejoice that Logan and Weston have been spared. Join me in praying for their continued health.

I wrote this blog entry 345 days after God called Griffin home, and 11 days after God called Courtney home...
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I’ve been reading a wonderful book called “Feathers From My Nest”. It’s by a remarkable woman of God named Beth Moore. I’m a huge fan of her Bible studies so I picked this book up about a month ago and began reading. The book is a reflection of Beth’s life from the perspective of a mother whose children have left the nest.

Today, I began reflecting on the feathers from my nest…and bear with me as you read this. For many, this may not make much sense. Courtney and Griffin were not bore from my body, but they were my children. God released love in me for these two sweet souls that I could never have imagined. And long before I was ready, they left my nest. But they left behind such precious feathers that I walk through my house and pick up and marvel over. Let’s start with Griffin’s feathers:

We put wood floors in when Peyton was in treatment. We were desperate to rid our house of carpet because it harbors bacteria and germs are a nightmare in a child with no immune system. As a blessing, the house looks really nice, but that’s not what impressed Grif. Griffin’s first feather in my nest was that he walked in to our home the first time and told me that wood floors are the best floors to hip-hop dance on. And hip-hop skills did this cutie possess!! He took lessons while he still lived in LA. If that weren’t enough, he taught me some too. I had a long and distinguished (HA!) dance career when I was young. My parents put me in pink ballet shoes for the first time when I was two years old. I grew into tap shoes, jazz shoes, and drill team boots over the next 16 years. I hung up my dancing shoes at 19 when I traded up to wedding shoes. It had been a long time since anyone taught me a new kind of dance. Some days when I’m zipping around the house in my socks getting stuff cleaned or cooked, I’ll slide a bit on my wood floors and think of my precious little hip-hopper. I now have some pretty smooth moves for a 30-ish stay at home mom!

Another feather Griffin left in my nest were his sweet little boy clothes. We have girls in this house. Poor Dane is painfully aware of the overflow of estrogen in his kingdom on any day. For a while, we had boys. Loud, jumping, burping boys. And it was great. The day Griffy left us, he wore a bright yellow t-shirt. Later that day, he got sick, so he took a bath and put on his camouflage jammies. He got sick again, so he changed again. I put his clothes in the washer there on the 10th floor for the Oncology families to use. Hours later, Grif went to meet Jesus. In all that, we forgot about his clothes in the washer. One of Grif’s nurses found them, dried them and gave them to me. As you know, Courtney loved Griffin. She was devastated when he died. I took the bright yellow t-shirt, and made a pillow out of it. On the back, I wrote a Bible scripture. She carried it to every clinic visit, every hospital stay, and slept with it every night. We called it her “Griffin pillow”. She loved to hug it since it felt like she was hugging him. I still have the camo-jammies. They are tucked away in my cedar chest where the most precious of my feathers are. I get them out sometimes when I’m having a hard time. I lay them out on the floor and see how small they are and how cute he looked in them. I know Griffin is more than okay. He has his Jesus, and now he has his Courtney, but holding his jammies lets me go back for a moment or two and remember his voice, his hugs, and that smile that melted me each time I saw it.

My favorite feather from Griffin came as a gift to us from him. As Griffin’s cancer progressed the last few days he was here, Monique and Barry insisted on letting Griffin spend one-on-one time with Dane and I so we could say all the things we wanted to say to each other before he left. I promised him Heaven would be the best thing he could imagine and that we would be there soon to see him. I promised him I would never, ever, forget him and would look after his mommy, daddy and Blakey. I also told him that he made me so happy and that I loved him so much. He told me that he loved me and would miss me so much when he went to Heaven and we played a few moments of “remember when’s”. I got lots of hugs on that last day. He played with my hair for a minute and the rest of the time, we talked about Heaven, Jesus, and the farm he knew was waiting on him. That was my gift from him. What I did not expect was that gift to become more than just a precious memory tucked into my heart. Griffin actually made a video telling Dane, the girls and I goodbye. Indeed, that is one of my most treasured feathers from this little man God gave to me for a season. His presence changed me and my heart forever. And I miss my little bird from our nest every single day. Yesterday, I found a precious scripture in Matthew 16:19. It says “…whatever you bind on earth will be bound in Heaven and whatever you loose on earth will be loosed in Heaven.” I bound Griffin to my heart here on earth, and God assures me Griffin will be bound to me in Heaven. Until then, I have his feathers to get me through until I see him again.

I have so many feathers from Courtney that I don’t know where to start. I have more from her than I do Griffin because God let me keep this beautiful bird in my nest much longer and much more frequently than Grif. And a few days after she left us, I was afraid that all the feathers she left behind would be too painful to see and touch. But God’s grace is abounding in this nest and her feathers are pure treasures to me. They are reminders of how much she loves us and how I know beyond all doubt that she knows how much she is loved in return.

My first feather from Courtney is the thousands and thousands of memories of I have of her. And it isn’t much of an exaggeration to say that I have photos to match almost every memory with her. My refrigerator, my living room, my computer, and the mirror on my antique dresser in the bedroom is covered in pictures of Courtney. In some, she’s alone, but mostly they have Dane, Peyton, Lindsay, me or any one of her numerous friends in them. I love walking through the house, glancing at the pictures and in my heart, recounting the stories behind them in. Yes, I get sad when I see them because I miss her beyond measure. But in the same breath, I am SO grateful to God for putting her in my life. I also have 14, yes 14 full videos I have taken of our family moments with Courtney and Paige. Countless hours of us at the lake, playing basketball, golfing, swimming, playing tennis, fishing, ice-skating, vacationing in Las Vegas, in the Jeep, hanging around the house just being silly, and my favorite one of all—her testimony. Precious as gold are the feathers that these tapes are to me. I can hear her voice and her contagious, distinct laugh, and see her beauty whenever I want to. I haven’t been able to do that yet, but the day is coming when I’ll be able to sit down and laugh over these tapes and the priceless memories my girl left me.

A favorite of my feathers from Courtney is how she drew her family and my family together and that gave me a friendship with her mother Kelly that will continue to be a God-sent blessing until Kelly and I go live in glory. In the few days after Court’s passing, I traded countless hugs with Kelly. At Courtney’s Celebration of Life Service, I hugged her again, but this time we squeezed harder and cried harder. It was a hug of understanding between two moms of two brave fighters, and a hug from one mother who wished so desperately to take away the hurt of the one who just lost her sunshine. I told Kelly then, “Thank you for sharing her with me.” And she said, “Thank you for loving her so much”. Courtney will always be a blessing in my life, but with Courtney, you get a packaged deal. A six-pack, if you will. We have her family as ours too. All six of them: Kelly, Paige, Britney, Nanny and Pops and of course, Courtney. And the five remaining feathers she left us with—her family-- will be a blessing for the rest of our days here.

I have a treasured Bible. I’ve had it since high school so it’s showing its age. I write in my Bible too. I highlight favorite scriptures, and I often write notes beside the scripture. Courtney always made fun of my Bible cover. To quote her, “It looks like it belongs to an old lady!” And she’s right! It’s kind of grandmotherly, but I haven’t found a good replacement yet. And I NEED a Bible cover because my Bible is overflowing with treasures that would fall out if not for the zippered-protection my geriatric cover afforded. The bulk of the treasures tucked in the pages of God’s beautiful Word are feathers given to me from God’s beautiful servant Courtney. I miss her most on Sunday’s because she ALWAYS sat with me at church. She would have friends all around her, but she always saved a seat for me on one side of her. Inevitably, she would write me a note mid-way through church and ask “Where are we going to eat?” And each time I would write back, “You pick. I don’t care.” And then we’d go back and forth for the duration of the sermon. Not just discussing lunch, but just writing about whatever. The lunch question just always triggered the note sessions. We talked about what God was speaking to us about through the sermon, we’d talk about boys, we’d talk about friends, or more often than not, we’d trade inside jokes. Every Sunday we did this. EVERY SUNDAY. My inside Bible cover is stuffed with these notes. Priceless feathers. Every one of them. I have a flower pressed in the book of Luke. She gave me the flower on Mother’s Day. I have a photo of her tucked in Revelation because she longed for Jesus’ second coming as much as I do. I have a plant leaf I picked her on a mountain in Colorado when God spoke to me about her role in my life and vice versa. It’s tucked away in 1 Samuel. I have cards from her, I have a picture she colored me from a coloring book during a particularly morphined moment at the hospital. It says, “To you. Love me”. I have an old appointment slip from clinic. I even have an old hospital bracelet. Who knows how that found it’s way there!

My favorite feathers of all are remnants of Courtney’s faith. I have notes of impromptu Bible studies she and I had. Scripture she and I found and highlighted in each other’s Bibles, and prayers we would write together. She found me sitting in the living room alone about 1:00 am many, many months ago. She asked me what I was doing. I told her, “Having my quiet time with God”. She seemed intrigued at the concept, so she started doing it as well. When she was with me, we usually did our quiet time together. We’d each study scripture, pray and make notes in our journals. Sometimes we shared what God told us. Sometimes we sat in complete silence. But those moments left indelible fingerprints on my soul. The basis of mine and Courtney’s relationship was our shared love of Jesus and my favorite feathers from her will always be that which points me to God.

Courtney liked to tease me that we could never really define what my title was for who I was in her life. Friend didn’t seem to cover all the bases. Mother and big sister were sacred roles already filled in her life. For purposes of getting me in all the ER visits and post-op surgical floor visits, I was Aunt Marni. We didn’t want the hospital hassling us over our lack of shared DNA so we fudged a little. But one role was crystal clear. I was Courtney’s Sunday School teacher. She was a member of our church and Dane and I teach the Young Adult SS class. She cheated each Saturday night and swiped my notes for the next morning’s lesson so she could see what we’d be studying the next day. One Sunday in early June, we did a lesson on Joy. Happiness comes from things. And happiness is temporary. Joy comes from the Lord, and nothing can take it if you truly have it. I asked the kids in our class if there was ever a time when they lost all happiness, but kept their joy. Having had time to formulate an answer due to swiping my notes the night before, in just a few sentences, Courtney reduced me to tears as she told our class that cancer often took her happiness, but Jesus was the source of her joy and cancer couldn’t touch it. The next day, she and I bribed Paige and Lindsay with the promise of pedicures if they’d watch Peyton for the afternoon, and we went shopping. We ended up in a Christian book store. When we got home later, she gave me a present she secretly bought for me at the book store. It was a frame. And she put a picture of she and I sitting together in her hospital bed. The frame simply says “Joy”. She handed it to me and said, “Marni, you give me joy and I love you.” That frame and it’s picture sit in a place of honor in my home. I hope they bury me with it. Feathers from my nest. Not glamorous or flashy ones. They’re better. They are day to day feathers. Reminders of how ingrained she was in my day to day life. Reminders of how tightly she too was bound to me on this earth, and, praise God, how tightly she will be bound to me in Heaven.

My precious birds left me way too soon. But they fly with Jesus now and He let me have them for a time so I could accumulate these feathers to show how much He loves me and How blessed I really am despite the hurt my heart has felt. And I will find strength in my memories and my feathers to carry on the promise I’ve made to God.

Love,

Marni

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

My Twitter friends...beautiful inside and out...

Get your twitter mosaic here.

And speaking of my Tweeps, here is my posting for the week for my Smarty-Pantser buddies. Enjoy!

katdish@marni71 - Well since you mentioned me twice in one tweet, I will be nice to you.

@Helenatrandom I'm being followed by Poo. And not "Winnie the " either...

br8kthru@marni71 whatever you do, don't sit on the toilet when it explodes. Just a warning... I'm looking out for you

katdish@marni71 Ugh! Why do people have to ruin all my fun?

br8kthru@marni71 Yeah, ignoring @katdish would be like ignoring a spreading rash -it's to your own detriment

billycoffey@katdish @marni71 @PeterPollock Is it too late to add a picture of @katdish laughing maniacally to my Things That Scare Me post?

@marni71: @PeterPollock @br8kthru @billycoffey @katdish If Jason does make that picture, send me the link so I'll know NOT to go there.

br8kthru@marni71 most people don't know that clorox makes a superb dipping sauce- tangy!

redclaydiaries@marni71 That's exactly what MY kids' school smells like! And sweaty kids. Can't forget the sweaty kids.

br8kthru@marni71 You haven't lived until you've tried my scrubbing bubbles souffle.

br8kthru@marni71 Can't go wrong with spray cheese on your finger. Highbrow & delicious.

@Helenatrandom I had peanut butter on a spoon for dinner last night. I got the recipe from @weightwhat

sarahmsalter@marni71 Got a little road rage today, Marni?

PuriChristos@marni71 mmmm pork

CandySteele@marni71 hey Marni - have a great day! I'm off now - saving lives and stamping out disease....

@CandySteele Yay for Nurse Candy! Wait a minute...that sounds...naughty. ;-)

@marni71 September is childhood cancer awareness month. http://bit.ly/q4gRA

BridgetChumbley@marni71 Isn't it swell to bond over the H1N1 germs and sounds of screaming and puking? LOL Thanks, Marni.

jdblundell@marni71 dilute gives me a picture of Jesus saying what you think matters not just how you act.

RT @br8kthru: @sarahmsalter spreading the wealth? socialist.///hahahahahaha!

weightwhat@marni71 Hi Marni! Want to dance with @HerbieGookins and me?

br8kthru@marni71 nice how I worked in Falkor though right? right?

@br8kthru At any rate, thanks for the stupid song in my head.

sarahmsalter@marni71 Girl look at u gettin' all free up in here! When I was growin' up the Baptists in our 'hood didn't raise hands except in school.

@Helenatrandom No, no, no. We're against anything that's fun. Get it right Helen.

sarahmsalter@marni71 So, fornication is okay as long as it isn't fun?

billycoffey@marni71 Actually, the Rangers are my second favorite team. We're still tight, Marni.

@billycoffey Whew! I'm glad. I don't want to see us go the way of you and @katdish or me and @br8kthru ;-)

billycoffey@marni71 I agree. I can only fight with one Texan at a time.

@Helenatrandom I read your tweet wrong. I thought you said you were flashing people ;-)

@marni71: Feeling led to #bethechurch in a powerful and creative way? Here's something you could do. http://bit.ly/12CEBr

@br8kthru @sarahmsalter Sensitive schmensitive. I want a man who can open up a can of whoop-a if he has too...not write a poem about it.

@sarahmsalter I found my balance :-) He's a hunk of man who can bench press a Volkswagen, but still slow dances w/ me in the kitchen

Found all of my old Prince CD's. I shall now quote his song lyrics all day. JK! @weightwhat would stop being my friend if I did that.

@billycoffey Awww Billy. Nothing Compares 2 U.

@macpowell Flash Forward was so good! Ole Miss/SC game? Not so much ;)