In March of 2019, I took my sweet almost 2-year-old, Lukas, to the pediatrician for strange marks on his neck and body. The pediatrician seemed concerned and ordered blood work. We were sent to the local hospital to get his blood drawn. We had no idea that in the next 24 hours our lives were going to drastically turn upside down.
The tests revealed our son’s platelets were low and his white blood cells were high, so a direct admittance to the hospital was recommended. After further tests were done at the hospital, we received the shocking diagnosis that our tiny toddler, who loved playing with his brother and seemed perfectly healthy, had Acute Lymphoblastic Leukemia (ALL).
Naturally we were shocked, but had little time to digest the news as immediate treatment was necessary. We were like any typical parent who takes their toddler to the pediatrician to be on the safe side. Instead now we found ourselves being introduced to an oncology staff. The medical team greeted us so warmly and treated us with the compassion two parents whose lives had been turned upside down would expect. The staff knew the shock and devastation of the diagnosis was only the beginning of our journey, and so did we.
Within a week of being admitted, little Lukas had surgery to place a port in his chest to begin chemotherapy and started having his first few doses of chemo in the hospital. Like most toddlers, lying in a hospital bed wasn’t his idea of fun. So, we spent much of those nine days walking laps in the hall, watching movies, playing games, and having visitors to occupy our bored and scared toddler.
On day five, the social worker, a nurse, my mom and I took a walk over to the outpatient treatment center. They wanted me to see where it was, get familiar with the staff, and see what we would be doing. The second I walked into the clinic I broke down in hysterics—I couldn’t believe this was our reality.
We left the hospital with a schedule of his outpatient treatment for the next 29 days. This treatment began the Induction Phase which is the first phase in frontline treatment for ALL. Within days, our son began spending more time just sitting around and not interacting with anyone. His engagement level went from a 10 to a 1 and the smiles and giggles faded. He was on a high dose of steroids (dexamethasone), which sucked the life out of him. He went from the happy, energetic, playful little guy to a raging, hungry, angry toddler. He gained more than seven pounds during the 29 days on the medication He couldn't sleep. He would scream for hours during the night. We would have to change his sheets and his diaper at least three times a night. He was unable to walk, play, or really move from the medicine. As a parent, it was heartbreaking to witness.
By day 29 of his treatment, the cancer went into remission. Slowly, we started to see Lukas, the spunky little boy with hardly any blonde hair and a beautiful, infectious smile come back. Although he is in remission, Lukas still has a long battle ahead of him. He’ll need three more years of chemo. And the worries of relapse and later term side effects will forever loom over us.
My son, my little hero will be a cancer survivor before he reaches elementary school. I think about the times when I had been driving to work when 101.9 The Mix holds the Lurie’s ‘kids cancer radio-a-thon’ would come on. I listened to those families tell their stories and shake my head in disbelief, wondering how they do it. I would cry along with some of them. I would pray to God and thank him for keeping my kids healthy and pray that we would not have to be those families. We’re now that family. Our whole life changed in a heartbeat.
There’s so much about childhood cancer we all need to be aware of. I’m passionate about sharing my family’s struggles and triumphs, in order to raise awareness and help others.
Here are six key pieces of advice I want to share when it comes to supporting families going through childhood cancer.
1. Don’t just ask “What can I do for you?”, Do Something.
One of the most difficult aspects of the initial diagnosis is knowing you need help, but not knowing where to find out, how to ask for it, or even accepting it. Wondering how you can make a difference? Start a MealTrain, drop off a gas or grocery card, mow the lawn, drop off dinner, pick up basic groceries at the store, or have food delivered to their house. Take the initiative and help. Everyone always wants to help in the beginning, but they are going to need help throughout the whole entire treatment. Don't forget about them. Put yourself in the family’s shoes and think about what you would want or need if this was your family.
2. Remember the siblings.
Hold a special place in your thoughts for the brothers and sisters ― this is hard for them too. They need extra attention, only in a different way. Babysit a sibling. Send a gift card for toys or books. Take them out for a special outing. Their world has been flipped upside down too. They have to watch their sibling fight for their life and more often than not are probably internalizing their fears and worries.
3. Even when remission is reached or chemo is finished, the fight is not over.
Families affected by childhood cancer are constantly plagued with the fear of relapse and the late term side effects that can occur months or even years after treatment. Chemotherapy wreaks havoc on a person’s body. There are so many other illnesses that a parent will still need to continue to worry about. Be mindful of how you approach conversations with loved ones and friends, don’t downplay or sugarcoat the experience. Be empathetic.
4. There is not a different or special treatment for pediatric cancer patients.
Do you know an adult who suffers from horrible side effect from chemo? Toddlers and babies receive the same types of chemo that adults do. There is no difference. The side effects are rough. Imagine how gut-wrenching it is for a family to watch their toddler go through the same thing, with some of the kids not even able to communicate how they are feeling and watching them be in pain.
5. You may see a child with cancer looking “normal” with a full head of hair, laughing, playing, and smiling. That child is still sick. It’s a long road.
Even though the outside might look like every other kid, their insides are working hard to fight off a terrible disease. They still might be on chemo and their immune system is weakened. The drugs that they have been taking are doing damage to other parts of the body. Remember that the fight goes on even after the child looks better and well past the end of treatment.
6. Pediatric/Childhood Cancer research is SEVERELY underfunded!
National Cancer Institute spends about 4 percent of its annual budget on childhood cancer. Children are dying every day while waiting for advancements in treatment that lack funding. Adult cancer research gets about 96 percent of the funding for advancements. If you want to help, there are many ways you can do so on a local and a national level.
Each one of you reading this has the capability to help. If everyone donated a few dollars that they would normally spend on a McDonalds breakfast, donut, or a cup of coffee—it would make a huge impact on the fight against childhood cancer.
Here is a list of a few places you could donate to:
A few of my favorite local foundations that help pediatric cancer families:
Your donation to these local foundations will go directly to local families in need.
All of the following foundations have helped my family so far. If you want to see what they have done for us, you can follow along at Journey of a Leukemia Warrior - Lukas's Adventure.
You can donate blood or platelets.
Join the bone marrow registry.