Kimberly Moore wanted to find a way to help her 1-year-old daughter, Evelyn, get around.
After being diagnosed with neuroblastoma at four months old, Evelyn became paralyzed from the arms down. Doctors told her parents the toddler would likely pull herself with her arms in an “army crawl” until age 2, at which time she would have grown enough to use a wheelchair.
But Moore, of Alberta, Canada, didn’t like that answer, so she turned to Pinterest for a solution. What she found was a DIY wheelchair fashioned from a Bumbo floor seat. Moore enlisted her husband Brad to help build their own version of the Pinterest chair for Evelyn.
It took Brad an evening to attach a secondhand Bumbo seat to a cutting board, and then rig the contraption with casters and small wheels.
“Her true person comes out when she’s in that chair,” Moore told ABC News. “She [now] has the same interactions as any other child would, being at eye level and exploring the world on the ground… That’s what she is able to do in moving around. It’s pretty exciting.”
Today, as I waited on pins and needles for our oncology doctor to call with results, one memory kept playing over and over in my mind:
I was a week or so into treatment at the Carolina House eating disorder treatment center, sitting across from my new therapist. I was working hard to choke back tears and finally muttered, “I’m so sorry, I don’t know why I am so sad.”
She quickly replied:
“I can give you many reasons as to why you are sad and why you have every right to be sad: You are in treatment, during Christmas, and away from your family. You are grappling with the fact that you have a severe eating disorder that has stolen years of your life. Your sadness is beyond valid. Feel it. You need to feel it.”
That memory has always stuck with me. It was one of the first times someone flat-out told me — be sad!
My daughter Marjorie’s scan results seem to bring up the same feelings of devastation and sadness, but I outwardly want to say, “I don’t know why I’m sad. The scans were good.” Then I replay that memory — and I embrace the hurt, sadness and utter disappointment.
I received the news today that Marjorie’s scans were the same as the last. No new growth and no regression. Just the same.
So, yes, while yay for no new cancer growth, my heart is shattered. I want it to go down, I want the cancer to be gone!
Marjorie’s cancer continually proves that life — and cancer — isn’t always black and white. And I stomp my feet and say, “I want black and white, d*mn it!” I want the doctor to call and say, “Congratulations, your daughter is cancer-free!”
But she is not — and yet at the same time, she is. It is a weird world. So here is the science of what’s going on, deciphered by me. I am doing my best to understand it all with my marketing and television background:
Marjorie was diagnosed with neuroblastoma, Stage 4S. Her cancer was not in the cortical bone (outer layer) or bone marrow — which was awesome! Marjorie’s tumors significantly shrank following her two chemo treatments. And because of the huge regression, we were able to stop chemo and let her body fight off the cancer. The scans since our post-chemo scan have been nothing out of this world. Yes, there was a tiny regression on the last scan, but it was still there. This scan — no regression and no new growth.
Our insanely fabulous, kind and caring oncology team completely validate and understand our parental confusion, frustration and heartache. Marjorie’s specific diagnosis seems to carry a wait-and-see prescription.
The question our oncology team will begin discussing is whether we go in and biopsy the primary source — her adrenal gland. We were unable to biopsy it after the initial diagnosis. Her liver was so massive, going after the adrenal gland for a biopsy was too dangerous. Doing the liver biopsy alone was beyond complicated..
An adrenal gland biopsy would not come into play for a year or so, but if scans continue at this no-change pace, it might be an option. There are so many questions as to what is showing up in these scans: What is left there? What is going on? It could be anything from cancer cells to a benign tumor. We just don’t know.
What we do know is Marjorie is the happiest, most talkative and loudest baby around (I have no idea where she gets that from). She cracks everyone up with her. And the minute you meet her, you instantly fall in love. Marjorie absolutely adores her big brother and would rather play with a huge garbage truck than a doll. She wants to be in water 24/7 and counts down until bath time. Marjorie can crawl at what feels like 100 m.p.h. and loves to pounce on Lilly, her English bulldog. Marjorie is full of life, and nothing (not even cancer) can stop her.
Marjorie is so much more than her cancer diagnosis. Marjorie is a daughter, a sister, a granddaughter, a great-granddaughter, a goddaughter, a niece (and a grandniece) and a friend. Marjorie shares my heart with her brother and dad.
All I know to do at this point is march on. We march on together in laughter and in tears. We embrace the results, as confusing as they are, and march on. We cry it out. We hug it out. We dance it out. We will survive and embrace life until the next scan. Whatever the next scan brings, we will continue to embrace life after that.
We will march on. But before we march, before we take a single step forward, we will be sad. And that’s OK. It is OK not to think happy thoughts. It is OK to be angry at the fact that cancer even entered our lives.
Today has brought a lot of tears and many memories of those first days after our initial cancer diagnosis. Marjorie and I spent much of today without TV or music on — and if you know me you know that is rare! I love my music and always have it on and blaring. Marjorie loves it, too. Today, I couldn’t bear noise. I didn’t have the energy to talk on the phone, and I knew that was OK. I needed to muddle through the sadness.
Today, I let the sadness slowly sink in. I absorbed the hurt like a sponge and processed through it. I laid in a puddle of tears on my floor, thankful that I had the ability to accept and embrace my feelings. I know that tomorrow will be a new day, but in this moment and on this day, I am sad. So if you need me, I’ll be sitting in sadness and muddling in this scan… and that is OK. I won’t be sad forever, and it doesn’t mean I am not beyond thankful her cancer isn’t growing. It just means I am sad today. Sadness doesn’t mean weakness. It doesn’t mean giving up. It doesn’t mean negativity. It just means sad. I get to be sad — and so do you.
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A few days ago, my husband, Luke, and I went on a little date to the movies. As we were watching the previews, the trailer for “Secret in Their Eyes” came on. I had never even heard of this movie before. It’s about a detective played by Julia Roberts who gets a call that there was a woman’s body found in a dumpster. As everyone from her agency rushes to the scene, they find out it’s actually her character’s daughter. She becomes frantic and jumps in the dumpster with her daughter, screaming and crying. She had been murdered.
After her daughter’s death, Julia Roberts’ character became a woman on a mission. On a mission to find the man who killed her daughter and put him away for life. She needed to find justice for her death. You could tell by her face the pain, anger, sadness, fight and exhaustion she was experiencing, but she never quit. She knew who killed her daughter, but for some reason he kept getting off. Years and years she fought for justice for her daughter, and the cure for it all was right there (knowing exactly who the killer was), but it kept getting brushed under the rug. The trailer ended, and I was in full-blown tears.
Luke looked over to me and asked what was wrong. I replied, “I know how she feels.” That might sound weird as our two situations are completely different, and it’s just a movie. But I could feel her pain.
Our daughter, Kylie, wasn’t murdered by a person, but she was murdered by a disease. She was tortured by pain, drugs and a disgusting killer who eventually took her life. It made her weak, and it made her suffer. People ask me how I do it. How I keep going every day. Not one day goes by that I’m not fighting. I have an inability to saying no, and I refuse to turn a family away. Since the second Kylie passed, it has become my mission, passion and drive to find justice for my daughter.
I’m angry, sad and hurting that this murderer of a disease is still on the loose, killing more and more children every single day. I’m angry more isn’t being done. I’m angry so many people turn a cold shoulder. I’m angry more and more children each day are being kidnapped by the disease. Their lives taken away and locked in a dungeon (hospital). I’m angry Kylie isn’t here. I’m angry for the suffering. I’m angry it tears families apart. I’m angry that children have to watch their brothers and sisters endure the torture.
I’m not just a mom who started a foundation. I am a mother on a mission to find justice. To fight every day of my life that one day this murderer will be locked away for life, never to be able to hurt another child again. I don’t understand how people can sit back and not do anything. Tomorrow your child could be the one kidnapped and robbed of their childhood. My child’s gone, and your child isn’t mine, but I promise to fight for them, to fight alongside you and to never give up on finding justice for all kids.
Look at this picture. Really look at it. This is my baby. My beautiful 2-year-old baby girl. Now tell me this is OK. I dare you.
In December 2013, Bree Rowand’s daughter, Kylie, was diagnosed with stage 4 neuroblastoma cancer at only 19 months of age. In an effort to keep her friends and family updated on Kylie’s treatment, Bree created a Facebook page: “Prayers for Kylie – Gods Little Warrior.” During Kylie’s 14-month battle with cancer, “Prayers for Kylie” grew to have over 200,000 community members in 47 counties. This army of support donated money and sent prayers for Baby Kylie, who sadly passed away on February 7, 2015.
After Kylie’s untimely passing, Bree felt they had gained such a vast and supportive Facebook community for a reason, and she wanted to pay it forward. In the past six months alone, she has raised over $40,000 and is using that money to help families pay their bills, gas charges and mortgages while their child is undergoing treatment. Please follow this link to learn more about Kylie’s journey as well as everything that is currently being done by her family in her honor.
Doctors have said treatment is no longer an option and Lila May isn’t expected to live much longer, KOIN News reported. Knowing her most recent birthday could be her last, Lila May’s family decided to make it a memorable one. They created a spectacular event that was part birthday, part Cinderella ball, part prom and part wedding day — “everything she won’t get,” Heidi Hall, Lila May’s mother, told the outlet.
The community came through for Lila May and her family after a call was put out on social media for help with the party planning. People donated time, money and party supplies to make Lila May’s big day magical.
It takes something special to shake a seasoned performer like Grammy-winning country star Miranda Lambert, especially with a crowd of thousands watching. Last Saturday, however, that something was 7-year-old Brooke Hester.
Brooke was diagnosed with Stage 4 neuroblastoma in 2010, which is a form of nervous system cancer that had spread to her bone marrow, according to her blog. She has now been fighting the disease for almost four years — more than half her life.
During the performance of her song “Over You,” Lambert made her way over to Brooke, who was wearing a pink cowboy hat and a hospital mask. The two held hands for a long, emotional moment while the country singer serenaded Brooke. Eventually, Lambert became choked up and was unable to sing the rest of the song.