Jillian Bolding's son, Alexander, was treated for medulloblastoma at St. Jude Children's Research Hospital in 2018. She is now working as the Regional Development Director in Oklahoma for ALSAC, the fundraising and awareness organization for St. Jude.
I want to remember every part of this journey. So, I write. And sometimes I talk into my phone and record myself. Rambling, really. But it’s fine because I want to remember everything. Every feeling. Every song in my head. Every verse I murmur to drive out those moments of doubt and fear.
It all started in 2017, after Halloween. Pretty much that whole month of November, my son Alexander would throw up all morning, complaining of headaches. He would get dehydrated, so dehydrated we’d have to take him to the hospital to get intravenous fluids. He started losing weight and sometimes lost balance and felt dizzy. At first, we thought tummy bug. But then he was diagnosed with mononucleosis, a viral infection.
Even after the diagnosis, I had this gut-wrenching feeling something was wrong. I didn’t know what, but I knew something was very wrong.
Before he got sick, Alexander won the integrity and friendship award for first grade in his elementary school. He is a leader, kind hearted, and an energetic nature explorer. He is the most joyful kid. His giggle is contagious.
By the time it was Thanksgiving, and he kept getting sick, we told ourselves if he didn’t get better by Monday we’d take him to the children’s hospital in Tulsa. We didn’t get to Monday.
He woke up Sunday and his lower back was killing him. I thought, “Great, now he has kidney stones or something.”
We went to the emergency room in Tulsa. And God bless the ER doctor because she said she’d do a CT scan just to “rule out the scary stuff, to make sure this is not a brain tumor.” I’m pretty sure I looked at her like she was crazy. My son does not have a brain tumor.
But he did.
I remember the doctor came in. She sat down and her eyes were watery. She was a mom, too. She told us he had a brain tumor. I will never forget my response. It was a long, silent scream. I was screaming so loud and long in my head, but no sound came out. It was the scariest scream and I never want to do it again. It was God protecting Alexander’s sweet ears. He was just playing in the bed not knowing what was going on.
The doctor and I went out in the hall and I fell to my knees and just started praying out loud. Probably too loud. I was crying and begging and asking all sorts of questions that shouldn’t come out of a mom’s mouth. Like, is he going to die? My husband was in Dallas. I had to call him and tell him over the phone.
That day, we took an ambulance to Oklahoma City. Alexander had brain surgery nine days later and the doctors were able to remove the tumor and determine it was probably stage 3 or 4 medulloblastoma because the cancer had spread to his spinal fluid.
They went over their treatment plan, but told us to consider our options. I remember it was a Friday night, around 11, and my husband and I were on the computer researching places we could take Alexander. I found St. Jude and saw the “E-mail our brain tumor team here” button. So, I did. It was short and sweet, maybe three sentences. And no lie, just 30 minutes later we got a response from Dr. Amar Gajjar.
He said he’d call us the next day. He called while my kids were out fishing. I peppered him with questions, so many questions, and he answered each one patiently and thoroughly. I scribbled answers on a yellow sticky note. He said he’d already seen Alexander’s pathology and that Alexander needed to be at St. Jude.
I wondered, who is this man? Is he really a doctor? A doctor wouldn’t call on a Saturday, right? What doctor would have time to respond to my e-mail in 30 minutes? I asked him what he did at St. Jude. When he told me he was the head of the Division of Neuro-Oncology, and that he would be our primary doctor throughout treatment, I about passed out. I was so embarrassed. I had no idea who he was. Why did I not Google him before this chat?! After hanging up with him, I was certain we would go to Memphis, to St. Jude.
I spoke with him on a Saturday afternoon and he wanted us there on Monday. That’s when we officially entered the “stop-trying-to-plan-ahead” lifestyle. We became a “take-it-day-by-day, sometimes-minute-by-minute” type of family. You can’t plan with cancer. You have to let go, release control, which is hard when it’s your son and you also have a 4-year-old daughter to support, but that’s the way it is.
At St. Jude, the treatment plan was so specific to Alexander, to the exact type and stratum of medulloblastoma that he had. Alexander started 30 days of proton radiation. He was sedated most days. Then he was off for 30 days. And then began seven cycles of chemotherapy.
Alexander turned 8 years old mid-treatment and we celebrated his birthday at St. Jude. As we approached the end of his treatment, I struggled with leaving St. Jude, truthfully. Who doesn’t want to leave a hospital?! But we felt so safe at St. Jude. Our hearts were at peace.
To think that Alexander’s case here will help kiddos with this kind of cancer in the future to better their treatment plan, it’s unreal. There was a time when I would change the channel so fast when I saw an ad for St. Jude come on because I couldn’t watch it, it was just too sad.
But I dare you not to change the channel. Watch. Listen.
We are now that ad I once dreaded. And I am so grateful St. Jude was here for my family.