I first had the honor of meeting Stephanie Goodall over the phone. I remember it well…she was sitting quietly in a hospital room on the 17th floor, I was at home washing the dishes. She was isolated from her other children and I was constantly getting mine to be quiet to I could talk on the phone. We had been connected by a director at St. Baldrick’s
when she realized that Stephanie’s son, Jonah and my Chase shared not only a hospital, but some of the same doctors as well. “You’ll like her, Ellie. She reminds me of you. She’s got four kids, faith, and writes a blog too.” Little did I know that I’d not only like Stephanie, but be encouraged by her and be even slightly in awe of her love for life and commitment to joy in the unthinkable. We were finally able to meet in person this past Saturday night at the Hearts For Hope Gala – what a joy it was to hug this dear sister in real life!
It was at this gala that Stephanie spoke: she opened up her heart and shared Jonah’s story – incredibly, beautifully formed. Jonah goes in for an MRI on Tuesday, May 23 around 1:00 CST and I’m thrilled to be sharing Stephanie’s text from the gala with you – not only so you can be encouraged, but so that you too can join in prayer for darling Jonah and the Goodall family. As you read these words, they’ll be on their way to the hospital.
“When Christina originally asked me to share our story [at the gala], I was excited to share a story filled with hope, optimism, overcoming odds and lessons learned. I was going to share a story that wrapped up nicely with a ribbon – that may have made you feel a little sad or uncomfortable at points but would have ended happy and hopeful. Pediatric cancer isn’t like that though – and based on recent MRI results, our ribbon has frayed. But before I get to the today in of our story let me go back to the beginning.
Our story probably begins in the Spring of 2014. Jonah was a happy, healthy, energetic, bright 3 1/2 year old who was wildly popular in preschool. He had both an older brother and sister as well as a baby sister. That spring regular waves of nausea and vomiting started to interrupt Jonah’s exuberant play with growing frequency. A visit to the GI doctor indicated everything was fine so Jonah was placed on a course of antacid and everything cleared up. Jonah continued to live his life at full speed, with a bump in August 2014 when he was diagnosed with an anaphylactic allergy to flaxseed.
Super Bowl 49 is a game that will live in infamy in our family – not because the Patriots beat the Seahawks with the swirl of “Deflategate” in the background, but because Jonah had another flaxseed exposure that landed him in the ER. After the Super Bowl event, Jonah’s nausea and vomiting returned and so we were back to GI. This time the antacid didn’t help and in May 2015, Jonah was diagnosed with eosinophilic esophagitis (EOE), which is an allergenic condition of the esophagus that effect 1 out of every 2,000 people. One of the best treatments for EOE is diet modification which we immediately implemented. Unfortunately, Jonah seemed to be getting worse instead of better. He was eating less and less, vomiting more and more. Our bright, rambunctious, big living little boy was fading before our eyes.
By July, our pediatrician was growing concerned as well. Jonah had become extremely lethargic and had lost almost ten pounds since the spring. He then had a episode of double vision followed by an episode of “word salad” (using proper words in incoherent order) and we were sent to the local hospital for an urgent MRI. What started out as a normal Wednesday, forever changed the lives of our whole family. A tumor, the size of a plum, was discovered in the cerebellum of Jonah’s brain. That evening we were transported to Lurie Children’s.
The following day, it was confirmed that Jonah had medulloblastoma, which had metastasized through his brain and spine. Although medulloblastoma is the most common malignant pediatric brain cancer, only 400-500 cases are diagnosed a year. The days that followed were a blur – surgery to remove the tumor, a life threatening hematoma, 2 weeks intubated in the PICU, another hematoma, surgery to place a shunt and central line. Jonah also suffered a sever case of posterior fossa syndrome as a result of the surgery, which only occurs 20-25% of the time. Basically, Jonah’s body forgot how to listen to his brain – it was almost like he was in a coma, but he wasn’t – he couldn’t breathe for himself, eat, move, smile or talk. As much as we longed to allow Jonah to recover from the posterior fossa syndrome, his cancer was too far spread and he didn’t have that luxury.
Pediatric cancer treatment decisions are a nightmare. As a parent, you have to decide between terrible and horrible. There isn’t a third, more pleasant option. We choose terrible, and Jonah received 5 rounds of high dose chemotherapy often referred to as “the kitchen sink” on the oncology floor. We then moved onto a 6th round of chemo that made the first 5 seem like child’s play, followed by a stem cell transplant.
In stereotypical fashion, we saw Jonah’s beautiful bright blonde hair fall out, we saw him continuously nauseous and throwing up so regularly that it stopped phasing any of us. We saw mouth sores that required a morphine drip to dull the pain, skin rashes that caused him to peel from head to toe, sepsis from neutropenia and other random infections. We saw him so miserable, it was hard to find the light in his eyes.
Because of the posterior fossa syndrome, when Jonah wasn’t at Lurie, he was at RIC (now the Shirley Ryan Ability Lab – a rehabilitation facility offering a variety of inpatient and outpatient therapy). Jonah had to relearn how to eat, smile, laugh, talk, squeeze a finger, sit, stand and walk. His hand dominance changed as his right side no longer possessed the strength it needed. A boy who had learned to ride a 20” 2-wheel bike at 4 was relearning how to ride with adaptive tricycles.
Jonah’s treatment didn’t end there though. He went on to have radiation as well. Radiation isn’t great for a developing brain, so much so that doctors rarely recommend it for children under the age of 3. In the window of 4-8, things are gray. Radiation destroys developing brains and most brain development occurs before the age of 8. Jonah was 5. Radiation is however currently the most effective treatment for medulloblastoma and so we moved forward. Although our team couldn’t tell us the specifics, they guaranteed us that radiation will cost Jonah IQ points.
Jonah finally finished treatment May 2016. He spent 275 consecutive days in the hospital, endured 6 surgeries, received close to 100 blood & platelet transfusions and faced many other hardships. The blessing is, the spirit of the boy we knew returned once he was done with treatment. He’s again silly, loving, kind, inquisitive and warm. He is also different – he is more timid, less confident, more scared. Cancer has changed him on the inside as well as the outside.
This past year out of treatment has been an amazing time for our family. Sure, it’s been weighed down by 6 hours a week of OT, PT & ST for Jonah. Sure there have been some academic struggles in school we’re having to work through. Sure Jonah’s had 2 additional surgeries to address lingering complications of resection. Sure Jonah wears hearing aides and walks with a walker. All of those things are true, but our lives have been infused with gratitude for the gift of together. Our family is again all under one roof doing normal life, traveling and making memories, filled with thankfulness.
This grateful, hope-infused gift of life was how I had originally planned to end our story. Unfortunately, that wouldn’t be the whole story. At Jonah’s last surveillance MRI in April, there was a new spot on spine that the medical team cannot explain. It is not certain that this spot is recurrence or not, but suspicion is high. If this spot is recurrent disease, there is no cure. The median life expectancy for children, like Jonah, with metastatic medulloblastoma with recurrence is 1 year.
This is why research matters. Research matters not only to Jonah, but to his siblings who love him so, who have walked this impossible journey and may still face the loss of their brother. It matters to his preschool friends from before and from now, who love his bright spirit and are being formed by their relationships with him. It matters to the 13 children diagnosed with brain cancer today, and the 13 children that will be diagnosed tomorrow.
The reason events like this [fundraising gala] matter is because only 4% of the US federal funding is dedicated to all pediatric cancer research combined, which is less stand alone cancers like prostate and breast cancer . Most pediatric cancer research is funded through private organizations, and events like this help fund those organizations.
I know that there are many heart wrenching causes that you can help support and the mere fact that you are here means you likely are aware of the devastation pediatric cancer can cause. I ask you to help not only in funding research through your donations, but also in raising awareness so that others beyond this room can be moved to help support research. Pediatric cancer is something you can’t wait to care about until it impacts you, because then it’s too late. The research of today will help the children of tomorrow much more than it will help the children living with cancer today.
Jonah will be having a follow up MRI on Tuesday, to hopefully give us more insight into what this spot it. It is our deepest desire that the spot has miraculously resolved and we will be able to proclaim the power of prayer. We also have to be prepared that the results will mark the beginning of our good-bye. Either way, our family is going to choose to live. We are going to lean in, love, celebrate, find joy and be together. I encourage you to do the same.”
