Kid’s Get Cancer Too: Our story of having twins born with Neuroblastoma

, , , ,

By Guest Blogger: Lynsey Maloney

My husband Casey and I welcomed our first child Savannah in January of 2012. She was our life – such a sweet, smart and easy going baby girl. The following year, my husband Casey and I discovered we were expecting another baby. We were so excited when we found out, just nine weeks into our pregnancy that we were having twins. After many ultrasounds, doctor visits, modified bedrest we welcomed our twin boys, Gage and Jace Maloney, to this world on August 12, 2013.

FB_IMG_1442256028969[1]

We were expecting happy, healthy baby boys. We were so excited for Savannah to meet her brothers. Gage and Jace looked healthy at birth, but shortly after delivery the pediatrician noticed a distended abdomen on baby Jace. He was taken to ultrasound only to confirm there was a tumor in his abdomen… that’s right a TUMOR in a NEWBORN baby!! Was this even heard of? He was immediately airlifted to Children’s Hospital in Minneapolis, MN.

Casey and I didn’t know what was going on, most of the day was a blur. The doctors told us that our precious baby boy was being airlifted to Children’s Hospital where he would undergo further testing. We got to see him for just a few short hours before they flew him away.

To make matters worse, the next day our pediatrician came to visit and said that because the twins shared a placenta in the womb, we needed to get an ultrasound on Gage. We were told this was a preventative measure to make sure there was nothing bad going on in Gage’s body.

FB_IMG_1442255929757

Later that day we got the news we were praying and hoping we wouldn’t hear, Gage had tumors on his liver. Yes, TUMORS on his liver!!

Gage was then airlifted to Children’s Minneapolis to join his brother for testing.

Life changed very fast, and we had no other choice than to come up with a “new normal” adjusting to life in the cancer world.

At just eight days old, Gage and Jace were diagnosed with Stage 4 Neuroblastoma, a cancer that affects the nervous system and develops from immature cells. Jace had a primary tumor connected to the adrenal gland and it metastasized to his liver, as well as through the placenta’s circulation to Gage’s liver.

The twins are the 10th documented case of identical twins with Neuroblastoma. Neuroblastoma is a cancer that generally affects children under the age of 10. There are four stages of Neuroblastoma, and the cancer can be aggressive or non-aggressive. The cancer is more commonly found in the abdomen, but can be found in other areas such as the spine or neck. Treatment can include chemotherapy, radiation and stem cell transplant.

Casey and I had the word “chemotherapy” in the back of our minds since all of this started, but were not ready to hear it. Before we could start the chemo treatments with the boys, there were a few test results our oncologist needed to have that would give some identity to the biology of the tumors.

After the test results came in, our oncologist, Dr. Chu whom we love, gave us the bad news. She said that both boys will be receiving eight cycles of chemotherapy. Before their chemo treatment could start, they needed baseline hearing and heart testing. There is a risk for high frequency hearing loss from some of the drugs, and sometimes it can affect the heart, so this was the reasoning for those two tests. They also both had a broviac catheter placed in their chests via surgery when they were just 10 days old.

A few days after the chemo treatment started, a specially-trained chemotherapy nurse talked to us about possible side effects. She said it can affect the “blood factory” in the bone marrow. She talked about blood work results they are watching and things to watch for. The boys’ blood that is affected by the chemo drugs is hemoglobin. Also, platelets can be low so if the boys have nose bleeds, we will need to take action and contact the oncology center. Also, the boys’ white blood cells count is important. These cells help regulate the immune system. That means our babies are susceptible to infections much more than healthy children. Babies are at risk for their immune system as they are not fully developed yet, then with the chemo, we need to be even more aware than other parents of new babies. We needed to protect them and asked that anyone with cold, flu, cough or any infection didn’t visit until they were better.

Casey and I were devastated with the diagnosis, but we knew we had to fight right along with the twins. Our oncologist, Dr. Chu, always believed in our children and she expected our boys to handle the treatment well and overcome the cancer. It was a very hard and long journey but we made it through, Gage and Jace were declared No Evidence of Disease on February 26, 2014.

FB_IMG_1442255959968

Our twins were very fortunate, and are now known as cancer survivors. I like to refer to them as “normal babies” now.

Who would have thought babies could be born with cancer? Who would have thought twins could be born with cancer?

Our fight is NOT over.

Although the twins are cancer free, there are many long-term side effects that can take place from the chemotherapy. Including but not limited to hearing loss, infertility, secondary cancers, heart problems, and many more! Gage and Jace are dealing with a few. Jace has Raynaud’s Syndrome and both twins have high frequency hearing loss.

Raynaud’s Syndrome causes some areas in your body – such as your fingers and toes – to feel numb and cold in response to cold temperatures or stress. In Raynaud’s Syndrome, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas. Treatment of Raynaud’s Syndrome depends on the severity and whether or not other health conditions exist. For most people, Raynaud’s Syndrome isn’t disabling, but can affect quality of life.

The twins will be followed by their doctors for life. There are many more children that are fighting, who have lost their battle and who have yet to be diagnosed. It amazed us at how many children and families have to deal with the “cancer life”. So many parents have had to deal with worse circumstances than our own. We are passionate about increasing funding for research, knowing there are better treatments yet to be discovered that will not be so toxic and having less side effects in the short-term as well as long-term.

2015-09-14_13.30.03

September is Childhood Cancer Awareness Month …

Please Go Gold!

I have started a nonprofit for Childhood Cancer in honor of Gage and Jace. You can learn more about it by visiting our website www.ameasureofhealinghearts.org or find us on Facebook.

I would love to give a shout out to the Princess Warrior Foundation run by Jil Fiemeyer. The 5K Run, Walk, Roll, Stroll, or Crawl is coming up on September 26h and you could find more information on that by visiting www.janefiemeyerprincesswarrior.com

Please give donations in September if you can whether it’s mine, Jil’s, St. Baldrick’s, St. Jude or CureSearch (CureSearch for Children‘s Cancer funds and supports targeted and innovative children‘s cancer research with measurable results, and is the authoritative source of information and resources for all those affected by children‘s cancer).

Our kids fighting cancer receive a LIMITED amount of funding through the government – four percent!

Please remember to always count your blessings.

Video Interview done by Kare 11: http://ameasureofhealinghearts.org/news/

About our guest blogger:

Lynsey Maloney lives in Deer Creek, MN with her husband Casey, daughter Savannah, twin boys Gage and Jace, and puppy Scooby. Lynsey enjoys working in Home Health Care, cleaning houses, and managing her nonprofit for Childhood Cancer. She always stays positive despite what her family has been through. 


Little Warriors…Big Fight

, , , , , , ,

By: Jil Fiemeyer

I still see them in my dreams at night. The countless bald-headed children smiling and laughing as they ride down the oncology hallway of Children’s Hospital in their wheelchair. The little girl wearing her pajamas, wig and sunglasses as she takes her remote control rat for a walk and giggling when she scared a nurse. The countless kids who walked confidently down the hallway to look at the Minneapolis skyline from the big window on the 7th floor, even if it meant they had to pull the IV pole that was attached to a port in their chest.

Jane getting out of her room and scaring the nurses (who were such great sports!) with her new remote-controlled Rat she named “Ross”.

Jane getting out of her room and scaring the nurses (who were such great sports!) with her new remote-controlled Rat she named “Ross”.

These are kids who day in and day out embraced their journey to fight the cancer bully with the courage and tenacity that would put professional football players to shame.

These same kids are the ones getting injected with poison in hopes that the chemo saves their life. They lose their hair, their innocence and some even lose their lives. These little warriors, these ankle biters, these teenagers… they all have one thing in common. They are fighting a big fight – the fight against PEDIATRIC CANCER – and I’m happy to say it’s a fight that most of them win.

And while the statistics have improved, sometimes even a 90% success rate is not enough. I’m a mom whose daughter was unfortunately in the 10 percent. My daughter, Jane, was diagnosed with Acute Lymphoblastic Leukemia at the age of seven – when she was a second-grader at Wadena-Deer Creek Elementary School. What appeared to at first be symptoms of an ear infection or maybe even Lyme Disease, within weeks was confirmed as that dreaded “C” word, CANCER. On September 6, 2012, Jane earned her ANGEL’s wings just 13 months after her diagnosis, just weeks before her ninth birthday.

Jane shortly after her diagnosis, before she lost her hair.

Jane shortly after her diagnosis, before she lost her hair.

What I learned in the last three years and probably the biggest surprise to me is that Jane’s medical journey is not that rare. Each year, the parents of approximately 16,000 American kids will hear the words “your child has cancer.” Globally there are more than 250,000 children diagnosed with cancer each year. Jane had Leukemia, possibly one of the most familiar types of cancer, but there are other types of cancers that affect children every year. Generally speaking, there are three categories of children’s cancer:

  • Leukemia: is a cancer of the blood. Leukemia cells are sick immune blood cells that do not work properly and crowd out healthy blood cells. Leukemia’s are the most common childhood cancer. Types of Leukemia include Acute Lymphoblastic Leukemia (ALL) and Acute Myeloid Leukemia (AML).
  • Lymphoma – Cancer of the immune system: The sick cells do not work properly to protect the body and they crowd out healthy cells of the immune system. Types of Lymphomas include Hodgkin’s Lymphoma and Non-Hodgkin Lymphoma.
  • Solid Tumors (Sarcomas) – Cancer of the Bone, Organs or Tissues: A solid tumor is a lump of sick cells stuck together. Tumors can develop in many parts of the body including the brain, kidneys, liver and bones. These sick cells crowd out healthy cells and keep them from doing their job. Types of solid tumor cancers include Neuroblastoma, Ewing Sarcoma and Wilms Tumors.

Across all ages, ethnic groups and socio-economics, pediatric cancer remains the number one cause of death by disease in children in America. Despite major advances – from an overall survival rate of 10 percent just fifty years ago to nearly 90 percent today – for many rare cancers, the survival rate is much lower. Furthermore, the number of diagnosed cases annually has not declined in nearly 20 years.

Jane waiting patiently for her transport nurse to escort her radiology for yet another scan.

Jane waiting patiently for her transport nurse to escort her radiology for yet another scan.

Some facts about childhood cancer…

  • Every day, 43 children are diagnosed with cancer.
  • More than 40,000 children are in cancer treatment each year.
  • The average age of children diagnosed is six.
  • One out of eight children with cancer, like Jane, will not survive.
  • 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
  • There are approximately 375,000 adult survivors of children’s cancer in the United States.
  • In the last 20 years only three cancer medications have been specifically developed for children.

While doctors and researchers have made strides in the battle against so many other types of cancer, the lack of funding and awareness for our children has led to an insignificant improvement in survival rates for pediatric cancer over the past decade. According to St. Baldrick’s Organization, more children are lost to cancer in the United States than any other disease – in fact, more than many other childhood diseases combined.

So how does childhood cancer become a priority cause in this country? The journey begins with each of us. We need your help to raise more funds and more awareness.

September is Childhood Cancer Awareness Month symbolized by the color gold. It is a month to go GOLD and show your support for kids battling cancer around the world and for those who lost their battle.

Here is how you can help (Pick just one, or try them all):

  • Paint your fingernails gold or wear a gold ribbon in your hair.
  • Wear a gold ribbon pinned to your shirt and tell people why.
  • Change your social media profile photo for the entire month of September to a gold ribbon badge. Customize your own profile photo with a gold ribbon by clicking here. It’s quick, easy and free.
  • Use the hashtag #gogold when you post to social media about Childhood Cancer Awareness Month.
  • Watch The Truth 365 documentary about childhood cancer. 
  • Hang gold lights in your home or business throughout the month September in honor of Childhood Cancer Month.
  • Paint a gold ribbon on your car window along with “Childhood Cancer Awareness Month”.
  • Watch Our Kids Are Worth “More Than 4”
  • Take the Whipping Childhood Cancer Challenge and challenge your friends.
  • Send a donation to CureSearch to help fund more research for childhood cancer treatments.
  • Donate blood products and get on the national bone marrow registry.
Jane and her sisters liked to play games when they came to visit her in the hospital.

Jane and her sisters liked to play games when they came to visit her in the hospital.

Support local organizations

  • Participate in the local Princess Warrior 5K Run, Walk, Roll, Stroll or Crawl. This 5K was created in honor of my daughter, Jane Fiemeyer, who died from cancer just weeks before her ninth birthday. It was her request before she died that she wanted to have a race – a race that would hopefully in one way or another help her dream for finding a cure for cancer become reality. JaneFiemeyerPrincessWarrior.com
  • Join the “Kayleen Larson Toy Drive” and drop toys off at Coborn’s in Sartell, Minnesota. These toys are given to Children’s Hospital in Minneapolis in honor of Kayleen who be forever 9 years old. Please join us in honoring her last wish.
  • Support “A Measure of Healing Hearts for Childhood Cancer” a non-profit organization that was created in honor of twins Gage and Jace, from Deer Creek, Minnesota, who battled the Neuroblastoma Cancer bully as infants and won!

My hope is that each of you will #GoGold during Childhood Cancer Awareness Month. Together, we can make significant progress toward ending children’s cancer.

Because children are more precious than gold.

About the writer: Jil Fiemeyer is a Wadena native and a Communications Specialist on the marketing team at Tri-County Health Care. She is the mother of three beautiful girls and enjoys each and every day of being their mom. Since her daughter’s Leukemia diagnosis and her death, Jil has learned first-hand the effects of grief and how it manifests around the ones you love. As her way to heal, Jil enjoys writing and has recently started talking to groups about grief, grief recovery and living your best life despite all the struggles that life has to offer.

————————————————————————————————————————————————–

*Tri-County Health Care hosts a “Parents Who Have Lost a Child” support group to help those in the area affected by the loss of a child. They meet the second Monday of the month from 5:30 – 7 p.m. in the Wesley Conference Room at Tri-County Health Care. Click here to learn more…