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.

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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.

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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.

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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.

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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. 

One Response to “Kid’s Get Cancer Too: Our story of having twins born with Neuroblastoma”

  1. im so happy for you that today your twins are cancer free. My son is 5 and was born with raynauds and although it’s not disabiling, living in Wisconsin or Minnesota in your case the winters are long and very cold. And does interfere.

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