What I wish I had known before my son was diagnosed with cancer.
My oldest son, Jordan, was diagnosed with a Spinal Cord Glioblastoma when he was 22 years old. Chances are you’ve never heard of it. It’s one of those “rare” cancers that few doctors, even oncologists, ever encounter in their careers. Jordan also had moderate/severe autism. My husband and I were not new at advocating for Jordan’s needs but I wish I had known, could somehow have been prepared, for how much farther we would have to go after he received a rare cancer diagnosis.
I’ve worked as a primary clinic nurse for 30 years so I’ve seen a lot over the years. Nothing prepared me for being the mother of a child with cancer. I wish I had known how much I would need to trust my instincts, my gut feelings…
Our cancer journey started in January of 2009 when Jordan seemed to have some difficulty with his left ankle. It was difficult to step up into the school bus or our van. We took him to our doctor who x-rayed his ankle and thought maybe it was sprained. A week later Jordan was saying that his knee hurt. Another trip to the doctor and another “clean” x-ray. A week later and my food loving son is refusing to walk to the cafeteria at work. January 20th was his last day of work and also mine. We took him to the Orthopedic specialist we had seen in Milwaukee for an unrelated problem. At this point he was in a wheelchair because he couldn’t walk without holding onto the wall or a person. Blood tests, bone scans, x-rays. Everything “normal”. So our family is at home with a young disabled adult man who can’t walk. But everything is “fine”. On February 4th, when my 200 lb husband had to carry my 180 lb son down the stairs we were at our wit’s end. We drove to the ER (again!) and were determined to stay there until we were given answers.
With the help of Jordan’s old pediatrician, he was admitted to the neurology floor with a diagnosis of Guillian Barre Syndrome. It made sense. He had ascending paralysis and protein in his spinal fluid. Three weeks in rehab and during that time Jordan completely lost his ability to walk. He also lost control over bladder function. We still didn’t question the professionals. Soon after he lost bladder control, we were released home to continue rehab. At this point Jordan was in a lot of pain but the “experts” told us Guillian Barre Syndrome isn’t painful so Jordan must be faking the pain to get out of therapy! Alan and I should have known better. Jordan had always had an incredibly high pain tolerance. He displaced his elbow when he was 3 – without crying. He had surgery to remove part of the bone in his arm and needed no pain meds after – and no crying. So now he’s crying and saying his hips hurt and we are told he’s “faking” and to just give him Tylenol.
Jordan’s diagnosis of spinal cord cancer came in March of 2009 after an MRI of the spine was finally performed. Surgery to hopefully remove the tumor was scheduled for the next day. It was too late for his mobility. He was permanently paralyzed from the waist down before he went into surgery. Fortunately, we had an incredibly compassionate and caring neurosurgeon who delivered the devastating news to us that our son had a tumor that could not be removed, only biopsied. Not only would Jordan never walk again, but he would be lucky to live a year. Most likely scenario would be that the tumor would continue to grow up his spine (it started in the lower lumbar region), and he would gradually experience more paralysis – and excruciating nerve pain as this occurred. So much for “just Tylenol”.
We were very fortunate in one sense though. We had a neurosurgeon and a neuro team who gave us the knowledge we needed to start advocating for the best care possible for our child. We were encouraged to search for second, third, even fourth opinions. Given the terminal nature of the disease it was gently stressed to us how important it would be to weigh quality of life against quantity.
I need to say that after those first couple months, after the real diagnosis, I have no regrets in the care Jordan was given and the advocacy our family did on his behalf. A lot of the credit for that goes to the incredible medical professionals that we encountered throughout what turned out to be a 3+ year journey. They helped us every step of the way in determining what was right for Jordan and what was right for our family. There were a couple professionals (doctors, therapists) who didn’t make the cut and needed to be “let go”, but just a couple and it was easy to cut them loose! They didn’t fit into our plan for what we felt was right for Jordan.
When it came to anything Jordan related we learned to trust our instincts, trust our gut, trust each other, trust God, and research, research, and more research. Jordan died peacefully and pain free at home on June 24th, 2012 with family and friends near his side. He lived and died on his own terms with help from a great team.
Always Jordan’s mom,
Danae
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