**I wrote this a few days ago. I didn’t want to post it until my son gave the thumbs up. Tonight he did. This is the hardest post I have ever, ever put on my blog. **
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“Pam, you need to get him checked out right away. A CT scan and a biopsy,” said the naturopath on the phone. “He has all the symptoms of Hodgkin’s Lymphoma.”
After months of mysterious symptoms and many trips to the clinic and seeing several different doctors, all the clues came together and the tests confirmed what the naturopath told us : My 16y son has Hodgkin’s Lymphoma, a kind of cancer that is the third most diagnosed cancer for teenagers in the United States.
Jeremy started having troubling symptoms last September. Headaches, fatigue, decreased appetite, sudden weight loss, random fevers and bouts of nausea and retching. These symptoms begin to randomly appear with no discernible pattern. I took him to the clinic. They ruled out a few maladies (no infections found, blood work good, etc…) and so we’d go back home with instructions to return if he didn’t improve.
Jeremy would have good weeks and my husband and I would think Ok, whatever It was It is gone now.
And then out of nowhere, he’d suddenly be exhausted and barely eating. He also developed a horrendous hacking cough. This in a kid who has NEVER had a horrendous hacking cough. I was mystified.
In a matter of months he lost forty pounds. “It’s not right,” I said to my husband and closest friends. “Something’s not right.”
My mom came to visit for the holidays. She told me privately, “Pam, all I can think of is cancer when I look at Jeremy.” My mom is an expert worrier so I dismissed her concern. I never once gave a single thought to the possibility that my kid had cancer growing inside of him, draining away his vitality. I never thought it, googled it or brought it up at the clinic. Neither did anyone else. Except Nana.
Back to the clinic we went. Jeremy was sent home with the explanation that it could be acid reflux and was given a prescription for an antacid. I worried that he had some kind of digestive disorder. An ulcer maybe?
Last month he had yet another follow-up appointment and the doctor who examined him prescribed vitamins. We were livid. Really? Vitamins?!
This photo taken in December when his sister stopped by his high school
I decided to take him to a naturopath, first time to ever make such an appointment. She listened to Jeremy’s history, to his description of his symptoms and to my story of it all. By now it had been four months of these weird symptoms and Jeremy was also now reporting night sweats. Jerry and I were also noting an increase in his fatigue. We were watching the vitality of our 16y son drain away. He’s never missed so much school. He’s never slept so much and ate so little. Yet still he pushed through with his studies, pulling strong grades and staying on task with school projects. He had the male lead in the Shakespeare play at school. Many times I urged him to dial back, to stay home, skip school and rest, but Jeremy is dedicated to his obligations, a young man with an old soul who is driven to keep his commitments.
On Valentine’s Day he had a surgical biopsy. The naturopath had discovered swollen nodes on his neck. The CT scan found more, also in his chest.
What a beard at only 16. I’ve joked with friends that I’m raising a middle-aged man!
Last week his diagnosis was confirmed, Hodgkin’s Lymphoma. Our world has been spinning ever since. This was not on the calendar for his junior year of high school. He just landed another major role in the upcoming comedy adaptation of Cinderella. He got the fairy godmother. “I’m going to dye my beard pink and wear a big dress,” he told me when he got the role. Yes, my son has a beard and an insane sense of humor. When the anesthetist nurse asked if had any questions before his surgery, he didn’t miss a beat: “Who has more knock outs? You or Mike Tyson?” And later when they called our home to check in on his recovery, I heard him say on the phone, “I’m doing fine. You’ll get a good Yelp review.”
Jeremy starts chemo this Friday. We don’t know yet what all that means. He hasn’t been staged yet as more tests were done and on Monday he has a bone marrow and a port put in his chest. We’ll know more later this week.
My best friend in the world drove down from Seattle after hearing the news. Our families became friends when she was pregnant with her first and me with Jeremy. They were born two days apart. When she saw him she burst into tears. He was forty pounds heavier when she saw him last spring.
The bright spot in this devastating news is that HL is one of the most treatable forms of cancer there is. No matter what stage, HL responds really well to chemo and radiation. I comfort myself with this when the scary gremlins try to hijack my imagination. I refuse to feed those hungry little trolls.
Another bright spot is the community support. Jeremy decided to go public and posted about his diagnosis on Facebook. It is definitely a sign of the technological age we live in when social media becomes part of your decision making process with a life altering event. “Think I should post it, Mom?” he asked. I love the relationship Jeremy and I have. We talk often and freely about so many things. He recently asked for a subscription to a magazine called Philosopy Now. Yeah. That’s my kid.
“You are a person who likes to process verbally and also joke around about things. Posting it on Facebook will give you lots of freedom to do that, ’cause you know it will spread like wildfire around at school,” I said. “And most of all, it will provide you with lots of support. I say go for it.”
We messaged our daughter Rose who is in Ireland for study abroad. The other upside of technology is that we can use it to stay close to her while she is so far away. You can imagine how tough this is for her.
Jeremy (pre-beard) and his best friend drumming up business for a school fundraiser with their sexy bods!
Jeremy will be getting treated at the children’s hospital which is a part of the hospital campus where I worked for three years. I’m already bumping into former coworkers, another bright spot. I have missed them. He has an excellent healthcare team, which here’s a little weird coincidence: Jeremy’s best friend was diagnosed a year ago, by a week apart, of a different kind of lymphoma and was treated by the same team. We walked this road with him a year ago and today, he is healthy and robust. We are all blown away that these two boys who have been friends since they were in diapers, could both get hit with cancer, and 12 months a part. Seriously!
A couple of weeks ago I was listening to a radio fundraiser for a children’s cancer organization. Usually I turn the dial. Too depressing. But this day I sat there in the parking lot, crying as parents told their stories, and yes, I pulled out my credit card and called the number and made a donation. It’s not supposed to happen to Us.
I want my son well again. I bought him new jammies recently. Last year he needed size L. Last week it was size S and they are still too big. I nearly lost it among the racks of flannel and jersey bottoms in the men’s department.
I don’t want my kid to have this. I want him to be healthy and well, with normal everyday teenage problems like his mom nagging at him and studying for tests and rehearsing for the next play. I wish with every part of me that he did not have to face this down. But he will, and we will do it together as a family and as a community. He is well loved and cared for.
I am well cared and loved for as well. Prayers and well wishes have come flooding in as word spreads. “What can I do to support you?” asked a neighbor as a few of us sat together visiting in another neighbor’s kitchen. “I don’t know,” I said. How can I possibly know what we’ll need when I have never been in this wilderness before? “But this right here,”I said making a sweeping gesture of the circle of women, “this right here is working pretty good. This is what I need.”
And that is why I decided to post this on my blog. I have a great relationship with my readership. Some of you are new readers and many of you have been subscribers for years. I count my online connections as a vital part of my tribe, the men and women who enrich my life with their presence. You enrich my life. Really. You do. Near and far away. Like Jo, in Australia, a soul sister writer friend who I only just discovered had lymphoma a decade ago. She’s written two books about it. I’ve already devoured one of them, as you can see by the scattered quotes in this post.
I have vowed to my closest friends that I will not isolate and numb myself which is my default setting when I am in pain. I can’t do that to myself, or my family. I need to be at my optimum and staying in the light amongst those who care about my well being helps me be my optimum.
So that’s where we’re at. This is a big week. His first chemo on Friday will be inpatient. The docs told us that he might be able to have subsequent cycles as an outpatient. They are forecasting 4-6 cycles which would be such good news to us. Out patient. He will rest better if he can be home in his own bed. It is not lost on us the strange context of good news when dealing with cancer. Suddenly good news means outpatient and single digit chemo cycles.
If you’ve read all of this, I thank you. Thank you for being present as I storytell a story I wish with all my heart I did not have to tell. But here we are, the opening chapter of a hard story. But it’s not the only story and it won’t be the defining story of Jeremy’s life nor of mine. ‘Tis but a scratch on life,” wrote one of Jeremy’s friends, quoting from Monty Python.
Yes, he’s right … ‘Tis but a scratch.
**Post Script: Today (Thursday) is a hard day. It is going to be Jeremy’s last day of school and also today we find out how extensive the cancer is in his body and his treatment plan. Prayers and good intentions for Jeremy and our family so appreciated. This is the hardest road we have ever walked. **