Last year I got a message from a family member a couple weeks before our son’s terrifying stem cell transplant. Our sweet Jonah, age 3, had been in treatment for stage four Neuroblastoma, and this was the next step. She told me to have faith in God, and that “this is not Jonah’s time.”
This family member had died four years ago.
During the stem cell transplant, the high dose chemo caused the veins around his liver to close. They were like rioting prisoners throwing off the balance in Jonah’s small body. They caused his stomach to swell with fluid. The fluid build-up caused his lungs to stop oxygenating. His lungs filled with blood. His lungs collapsed. And, the three of us became the prisoners of this careless, extra sickness.
He nearly died before our eyes three times over a relentless 162-day period in the PICU. While holding his hand, I would witness the breathless space that exists in between what the doctors can do and where something else takes over. I kept my family member’s prophetic message in my heart like I was a little girl holding a treasure in her hand – it was mine.
Our epic hospital stay was sprinkled with friends unknowingly recounting similar dreams of Jonah, “it was vivid” and “he was healthy” “he was running and playing outside.” Oh, how I shed my privileged, pre-cancer grievances with God, and I believed.
We aren’t the only parents at Children’s Mercy who this personal phenomenon has happened to. I’ve considered the idea that we have become crazy, desperate, and delusional as a result our children’s cancer dragonesses, and I while I am willing to admit I have felt all three, that doesn’t make sense in Ella’s case.
We met Sarah, Joe, and Ella in our hallway on Four Henson, the oncology/hematology floor at Children’s Mercy. Ella was two, and diagnosed with medullablastoma, brain cancer, after they discovered she was having seizures at home. Ella was beautifully bald, and smart for her age. Aaron and I bonded with Sarah and Joe over our bad luck.
They shared with us that they had been surprised to notice Ella developing a special relationship with God. This was interesting as they had not been outwardly religious with her. Sarah told me, “We were at the zoo, before diagnosis, and out of nowhere Ella started saying “Jesus.” She said it a couple times without prompting and then moved on.
Honestly, it terrified me. This was at a point when I just knew deep down inside that something was wrong with her and I thought in that moment that I was going to lose her.”
Ella was further along her treatment than Jonah, and any success Ella had felt like success for Jonah, too. Ella was victoriously declared No Evidence of Disease, in remission, at the end of her treatment.
Out of the woods, Ella continued to show signs of a connection to God. Sarah shared the following:
“I asked her if Mary was nice, and she replied with, ‘yep and pretty, she wears a blue dress like Elsa.’ This surprised us because Ella had never seen pictures of Mary before. Ella also told my mom that ‘Mary was so very kind.’”
Despite Ella’s remarkable relationship with God, her cancer returned three months later, and this time the chemo wasn’t working. Sarah and Joe, under the advisement of their doctors, decided to end Ella’s treatment.
“Joe told Ella that Jesus helped make her better and Ella replied with, ‘and Mary, too.'”
Broken hearted, they explained to us during a visit that letting Ella go was the right thing to do. Ella had gone through three stem cell transplants, each preceded with high dose chemotherapy. Also, she had brain surgery, a frightening PICU stay where she was intubated and sedated, a cancer relapse, more high dose chemo, and the daily poking and prodding that goes along with cancer treatment. Radiation would likely reduce her brain function and leave Ella not Ella. They bravely entered her into hospice.
Ella gave Sarah and Joe treasures to hold on to as her time in this life was ending. She reassured them frequently, saying things like “I’m done,” “I want all my bad stuff to go away,” “Just be happy for me,” “You’re a good mommy.” Sarah and Joe believe God was speaking to them through Ella, and Ella knew what was happening to her and was embracing it.
A few days before Ella died, Joe wrote on her their blog:
“We are having difficulty with all of this as would any parent. We’ve been praying for a cure for Ella, but it seems that God’s definition of cure is different than ours. We can’t get mad at God for all of this. Ella is a gift to us all. She has asked for a sister for her birthday. Maybe time will heal and we can grant her that wish in the future. Who knows, she may know something that we don’t. Pretty sure that God talks to her.”
Ella passed away in Sarah’s arms on September 14. A Catholic priest gave Ella the Sacrament of Confirmation and declared her a Saint, because she died so young and had not sinned.
A few weeks later, Aaron and I brought Jonah home from Children’s Mercy, lungs filled with air and cancer free. We celebrated his fourth birthday at the park a month later. He was running and playing with his cousins; he was healthy.
I don’t know why Jonah is here and Ella isn’t. Sarah and Joe know they will see her again in Heaven – it’s just a matter of time. And, St. Ella has continued to leave them her treasures.
They are expecting her healthy baby brother in July. And, they are moving into a new house – Ella’s house. Their realtor took them to a house where a previous offer had fallen through. They noticed a sign for “Ella’s treat jar” on the previous owner’s pantry shelf. Ella, about two years old, lived in a room upstairs.
It’s possible the events in Jonah and Ella’s lives have reasonable explanations that have nothing to do with God. But, I don’t believe it. Life is much better when you have faith you are being looked after, that you know you will be OK. No matter what.
Jonah often tells me a story now. He says, “Mommy, I came from the sky and flew home to you.” Sometimes he adds, “I flew home to you in my rocket shoes.”
They must have those in Heaven.
Annie lives in Prairie Village with her husband Aaron and four-year-old son Jonah. That’s the most normal thing about her. Jonah was diagnosed with Neuroblastoma in November 2011. Annie left a job she loved as a digital marketing strategist at VML to be with Jonah full time. About her situation, she says “the cancer has chipped away at and uncovered me like I was a buried fossil.” But they did it. Jonah is in remission, and finishing his treatment. You can find her on Instagram or Facebook.