Your child has cancer.
On January 29, 2015, Brandi and Mike Matthis of Baton Rouge, Louisiana heard that devastating sentence about their daughter, Alli, who was six at the time.
Alli was so exhausted she couldn’t walk from the sofa to the fridge for a snack. Her pediatrician said it was anxiety and wanted Alli to have a consult with a psychologist before she would do a blood draw. However, Alli was acting totally unlike herself and Brandi’s intuition told her something was seriously wrong.
“Her white blood count should have been between 5,000-10,000,” Brandi says. “It was 500,000.” Alli’s organs were starting to shut down and she was in danger of having a stroke. The local hospital airlifted her to St. Jude Children’s Research Hospital in Memphis where she remained for the next 10 weeks with Brandi.
The next couple of years was an upsetting whirlwind of weekly chemotherapy treatments both in Memphis and at a satellite of St. Jude’s in Baton Rouge. The chemotherapy for Alli’s particular type of cancer should have been straightforward and not terribly harsh. However, Alli’s genetic makeup was unusual and made the chemo even harder on her body than most. She dropped below 55 pounds and could not walk for the next two years. A couple of times her reaction to the treatment was so severe it nearly killed her.
But Alli survived. Today she walks on her own, goes to school every day, and has been cancer-free for more than a year.
So how do you make it through a parent’s worst nightmare? Here’s what Brandi says got them through their child’s cancer diagnosis.
Accept Help and Gifts
Some people would rather do everything on their own. But if your child has cancer, Brandi warns, this is not the time to go it alone. Whatever people offer; accept it.
For two years while Alli was in treatment, friends put together a meal drop-off schedule and a cooler sat on the Matthis’s front steps for deliveries. It was a small thing, but it made a huge difference: it means that for every night for two years, the Matthis family never had to think about making dinner.
Have pets? When Godiva, the Matthis’ young, energetic dog, needed more exercise than they could provide because of Alli’s treatment, another friend set up a private Facebook group of volunteers. They came over and took Godiva on long walks or brought their own dogs over to play with her in the backyard so she was too tired to be a concern. While Brandi had briefly considered rehoming the dog, both daughters were devastated at that possibility. Saying yes to a group of volunteers who let themselves into the backyard every few days meant that didn’t have to happen.
“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good.’ When your child is going through something so traumatic [as cancer], say yes.”
If you are horrified at the thought of allowing a friend, acquaintance or even a stranger to spiff up your home for free, let that go. Don’t stop anyone from unloading and loading your dishwasher or helping you fold laundry. These small bits of help will be life-savers, because chemo makes the immune system weak and accepting cleaning help means your child is less likely to pick up a life-threatening infection. “Someone even offered to come over and sanitize the house before we got back from a chemo treatment at St. Jude’s,” Brandi says. “And I said yes.”
As for gifts, don’t worry about a sick child getting spoiled. If someone asks for your address because they want to drop something off, give it to them. These are not normal times. Whether it’s a coloring book, a deck of cards, a fancy dress or a gigantic inflatable unicorn that shows up on your front lawn with a loving note, the distraction of opening a present can go a long way with a sick child.
“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good,’” Brandi says. “When your child is going through something so traumatic, say yes.”
Question The Doctor
You are your child’s advocate, so it’s your duty to understand her treatment protocol.
“You have to ask questions,” Brandi says. “I don’t care if you have to ask 3-4 times. You ask them until you have understood the answers.”
“Even at an amazing hospital, people are human and they make mistakes. You are your child’s voice. You have to be on top of everything.”
When you pick up medications for your child, make sure they have given you the right medicine and the right dose. Several times Alli’s doses were off; Brandi only caught it because she kept a journal of everything Alli was taking.
“Even at an amazing hospital, people are human and they make mistakes,” Brandi says. Be sure you know what’s going on at all times and make sure every doctor, physician’s assistant, nurse and pharmacist is correct about your child’s treatment. Your child’s doctor has a lot of very sick patients, but you have one very sick child. “You are your child’s voice. You have to be on top of everything,” she says.
But Remember: Google Is Not A Doctor
Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.
Looking up your child’s diagnosis and prognosis may be tempting, but since every child responds to treatment differently, it may not be wise. Alli had a tough time with a treatment that was supposed to go smoothly. Some children sail through treatments that are harsh on others. Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.
Research Hospitals Before Treatment
Once your child starts a treatment protocol, whether chemo, radiation, surgery or all of the above, you cannot change where she is being treated unless that treatment has failed. That means picking the right hospital from the outset is key. Discuss the options with your pediatrician, take notes, and make a list of the pluses and minuses for each.
Brandi says her family was lucky because St. Jude’s has a satellite affiliate in Baton Rouge, so Alli only needed to go to Memphis for treatment periodically. And when she did, Brandi and Alli stayed at the Ronald McDonald House along with other families whose children were receiving cancer treatment at St. Jude too. Ronald McDonald House, which does not charge for accommodations, was an incredibly supportive environment for the Matthises, allowing them to face some of the roughest spots of Alli’s treatment surrounded by people going through the same thing.
Take Care Of Your Family’s Mental Health
Beyond the pain and discomfort of treatment, your child will navigate a forest of powerful emotions as they go through treatment: fear, anxiety, and uncertainty. Your child may also make friends at the hospital who don’t survive, as Alli did. “I don’t know how Alli will process that,” Brandi says. “It was devastating and one of the reasons why I had her see a child psychologist. I didn’t want her to keep all of that in and then explode when she’s 16.”
“If you have a religious faith, go towards that. If you don’t, go towards the people you love.”
If psychological services are available to your family and your child, take advantage. Don’t burden your child with negative feelings you can address with a professional, a friend, or a clergy member. “If you have a religious faith, go towards that,” Brandi says. “If you don’t, go towards the people you love.”
The Lighthouse Family Retreat a faith-based organization that helps families of every denomination get through childhood cancer, was a big help to the Matthis family too and they attended two week-long beach retreats. Ask your child’s doctor or your clergy about other organizations like it that can help give you strength while your family lives through childhood cancer.