My son’s journey with cancer
It started in February of 2020. 2020, the year that will be the bane of existence for millions of people.
It was the first week in February, and unusually warm for the mid-Atlantic states. Andrew, my boy, had an appointment with his physical therapist. His feet always turned inward, causing him to fall frequently when he tried to walk. After years of in-school, PT, and expensive braces he kept losing, my husband and I decided on private PT to help. BTW — he is also low functioning autistic.
I brought up the weather for a simple reason — the unusually warm weather allowed him to wear shorts. Shorts in February — I’ll take it. During his session the therapist called me back to ask me about something on the back of his leg. Since he was, at that point,16 years old, I stopped getting close enough to help him with bathing and dressing, so I never saw the grapefruit-sized mass on the back of his left leg, between his butt cheek and kneecap. Since I didn’t hover over him at home, and during the winter he always wore pants, I never noticed it.
Cliff notes version — CT and PET scans, we found out that he had an MPNST — Malignant Peripheral Nerve Sheath Tumor.
Well... shit.
When we first met with the oncologist — a wonderful, fantastic woman — she said his prognosis was “dismal” and gave him a 20 percent chance of survival. The two hour drive home was spent in silence. The word “dismal” kept replaying in my head like a broken record. I was numb. My husband was numb. Andrew was happy…content to watch SpongeBob on the minivan’s DVD player. He had no idea what was growing in his body.
He also had countless spots in both lungs and another on the base of his brain.
Soon, we had a plan. His first round of chemo would start in mid-March. My hubby went with him for that first week while I stayed home with our 18 year son, who also has autism but is higher functioning. I cringed when I got the text from my hubby saying, “they just started chemo.”
“He’ll be alright.” I kept telling myself, “he’s in the best of hands.”
A couple weeks after his first round of chemo, I was helping him dry off after his shower, and tried to hide my scream when clumps of his hair came off in my hand. More hair was on his pillow.
Then came another round of chemo. And another. And another. I went with him, since I’m mom, and rubbed his back as he vomited into the green plastic bags. And in the trash basket. And on himself, right after a shower and change of clothes. And on me. I kept telling him that he’ll be okay, even when I didn’t think it would be. 20 percent and “dismal” never left my mind. Why were we putting him through this when he had such a small chance?
The hospital’s staff was fantastic. We were assigned a social worker, who started the ball rolling for Make A Wish. I was given resources for grief counseling near me. The knot that formed in my stomach the day we sat down with the oncologist kept getting tighter and tighter.
Surgery day rolled around, to remove the much smaller, but still stubborn lump on his leg. He didn’t seem to be bothered by the pain, used the walker only once, and showed them all that he’s as physically strong as I wish I was emotionally, and I had a flicker of hope in the back of my mind.
During each hospital stay he’d busy himself with his tablet, watching videos of people eating. I never knew that was “a thing.” But he liked the other videos, which I soon learned were ASMR. So, I did the mom thing and started to make my own. He would get the biggest kick out of seeing the crazy, fake fingernails on my hands and then see them on the computer. I was making him happy. I found a new hobby to occupy myself, and my biggest fan would watch his tablet, MY videos on his tablet, while playing with the fake nails I superglued onto my own. He loved that I was “in” the computer.
Another PET scan. Not only did they remove all the bad stuff from his leg, but the nodules in his lungs were significantly smaller. The oncologist said she had never seen a patient respond as well as he had. The surgeon removed all the bad stuff from his leg, and non of the surrounding tissue showed any sign of it.
“He’s going to be fine.” I told myself, right before I fell into a Xanax-induced sleep every night.
A few more rounds of chemo. It took everything I had not to cry when I say my boy completely hairless — no body hair, not even eyebrows or eyelashes. He had to get a feeding tube to help with weight gain. He was always thin, but now — standing at 5 feet 7 inches tall — he weighed 88 pounds.
Another surgery, this time to remove the nodules in his lungs. Two in each lung. Recovery was rough — he was in quite a bit of pain. His soft, smooth, almost flawless skin now bore a red scar from just below his chin to his bellybutton. Two additional scars, where the chest tubes were, were thrown in just for the hell of it.
Two more rounds of chemo.
Another PET scan. All the bad stuff from his lungs were gone. None of the surrounding tissue was affected. He seemed to be free of the damn disease and home free. He was going to be okay.
We go home after the last round, the memory of all the nurses lined up in the hallway clapping, cheering, and giving him high-fives still fresh in my mind. I tried to erase the words of our oncologist; we can’t let our guard down; we have to remain cautiously optimistic.
“He’s okay. He’s part of that 20 percent. Everything will be back to normal soon.”
About a month later, he went back for a follow-up CT scan. Our doctor said that within the first two years is the “danger zone” for tumor regrowth. It showed nothing in his leg, but “something” in his lung. “Probably just scar tissue” my husband told me. He was scheduled for another PET scan the week before Thanksgiving.
We have been through a lot with the autism. The special program he is in at our local high school is excellent. We tolerate hearing SpongeBob at 2,3, and 4 in the morning. Whenever Andrew would push our buttons, and he knew how to do that, I’d just smile with every uncontrolled screech, telling my hubby and older son that we “would be in a different situation,” and that after all he had been through, seeing him get back to normal — his normal — was a dream come true.
The first week of December, during the shopping rush with a dash of Covid mixed in, I came home from shopping and the hubster told me the news. Not only were more nodules back, but they brought friends. No more surgery — it wasn’t an option. Ditto for the chemo. There was nothing that could be done.
Well….shit.
I dreaded Christmas morning. We spoiled him, and even though he opened his gifts at warp speed, it still took almost an hour to finish. I took pictures, used my phone to take videos, but knew that my own memory would hold onto every second.
His latest PET scan, just a couple weeks ago, showed that the nodules in his lungs have spread. Too many to count at this point. The thing at the base of his brain is bigger.
So, as I sit here this evening, I’m facing the reality that this is the year I will outlive my baby. I already bought his urn — he’ll be on my nightstand, the last thing I kiss goodnight and the first thing I kiss good morning.
Everything that can be said to me has been said — he’ll be in a better place, you won’t have to worry about what to do with him after I die, we’ll see him again, he’ll be out of any pain… Even at the age of 40-something, talking to my 80-something mom and hearing her say it will be okay to ”let go” helped…a bit.
But damn, I want my boy. Autistic or not, he’s my baby.
The waiting is the hardest part, thank you Tom Petty. Not knowing what the next doctor appointment holds is what keeps me up at night. This isn’t the way things are supposed to be.
I’ve all but given up on taking care of myself. What’s the point of daily walks to try to lose weight that I’ve had since college? Pizza a few times a week — sure. Who cares about long-term health problems at this point. If the average lifespan is 70 years, and I’ll hit 50 in the summer, and no doubt a basket case, then yes, I’ll have extra cheese on my burger. Double fries? Sure. A shot of vodka with my Cheerios? Yup. I’m not going anywhere anyway. Why worry about living a long life if half my heart is gone.
This isn’t the way life is supposed to be.