The Beginning

March 12, 2020

It has been four days now since I learned of my son’s diagnosis of Hodgkin’s disease. I am still struggling with feelings of denial, anger, and guilt. I am particularly frightened because I understand the standard treatment is chemotherapy, which kills the patient’s immune system, and the worldwide Covid-19 pandemic is knocking at our door. Can you think of a worse time to kill someone’s immune system?

I decided to start a blog for two primary reasons. I want a place where I can talk about how my family is dealing with it, and I want to be able to put out information about how things are going and not have to answer the same questions over and over and over again. I will post a cast of characters for those of you who don’t know every single person in my family. This blog is written to keep my friends and family up to date, though all are welcome here. If you have a question about something I’ve written, please leave a comment. If you’re wondering, chances are someone else is, too. And as I go through emotional ups and downs during this time, my writing may not be as clear as I think it is. But please check the FAQ first to see if I’ve already answered it, since the point of this is to only have to answer each question once.

At this point, we have very little information. We go in to the hospital (assuming it is not overwhelmed yet) for diagnostic testing and staging in a few days. The very few people I have told have asked how they can help, and honestly, I have no idea. I don’t know what we need yet, partly because I don’t even know what we are looking at.

October 2019

In early October, Eirik went in for his annual well-child visit (formerly known as checkups). While she was examining him, our doctor felt his lymph nodes and noticed that there was a small lump. She ordered an ultrasound just to make sure it was nothing to worry about. Of course, ultrasound techs are not allowed to tell you anything about what they see because they are only trained to take the pictures, not interpret them. A couple days before Halloween I was at a business conference and the radiologist called me on my cell phone to tell me that the images needed to go to oncology and we needed to schedule a biopsy. I asked if there was anything else we could do instead, and they said we could try antibiotics to see if it is just an infection. We put him on amoxicillin and within four days he broke out in hives all over his body. He desperately tried to convince me it was chicken pox, but we took him off the amoxicillin and he cleared right up. I couldn’t wrap my brain around the idea that my 13-year-old son could possibly have cancer, so I ignored it for a while. I told him that if it didn’t go away on its own by the end of the year, we would call the doctor again.

January 21, 2020

Sure enough, January rolled around and he pointed out that his lump was still there. So reluctantly I called and we went to meet the surgeon on January 21 and get his take on things. Eirik was Mr. Funnyman and joked about growing a new head, and being Zaphod Beeblebrox. He mentioned that at one point he thought he had a lump on the other side of his neck, too, but no one could find it when they looked for it in that moment. He said that if he was growing a third head, he would be the knight from Monty Python and the Holy Grail. Eirik’s sense of humor and his cultural knowledge impressed the surgeon. He was also impressed at the size of the lymph nodes, remarking that they were among the largest he has ever seen. He said that he doubted it was cancer because Eirik has no other symptoms – no appetite loss, weight loss, night sweats, etc. But he didn’t know what else it might be. He ordered some bloodwork for testing and we made a follow up appointment to go over the results.

This was also about the time I learned about the coronavirus, but the intersection of these two things did not occur until much later. After all, this was a disease that only existed in China, and they were containing it by locking down Wuhan. Far away from me and my son.

February 14, 2020

Ben and I both took Eirik to the appointment where we learned that the blood tests didn’t shed any light on the problem. “Congratulations!” the surgeon said. “We have no idea what’s wrong with you.” I told him about Eirik’s newfound allergy to amoxicillin, so we tried azithromycin instead. Eirik tolerated that well, but the lump stubbornly remained, so I agreed to the biopsy. I just had wanted to exhaust all other options before allowing my child to be sliced open and cut apart.

By now there were about 600 cases of Covid-19 outside of China, so just to be super safe I decided to use our tax refund to stock up the pantry (which was woefully bare) in case of supermarket closings. Because I thought that seemed like a reasonable thing to do. I did, in fact, purchase a 50# bag of rolled oats, a 25# bag of beans, another of rice, and two dozen cans each of crushed and diced tomatoes, along with two dozen pounds of butter so that in the unlikely event that food availability becomes an issue, at least we will have chili to eat while we all go stir crazy.

March 2, 2020

On March 2, I took Eirik to the hospital for surgery. As they prepped him, he was cracking jokes and making everyone laugh. The nurse remarked that it was a very healthy and mature coping mechanism for the fear he was likely experiencing. The procedure went well, and the surgeon came out to tell me that he had removed a lymph node “the size of an egg”. There was another equally large node he wanted to remove, but he couldn’t get it out without making a larger incision, and since this was just a biopsy, he left it. Eirik recovered well, and quickly regained his sense of humor as he held his anesthesia mask up to his face and breathed raspily through it, holding out one arm and saying, “Luke, I am your father!” He wanted to bring home the paper beret he had worn in the operating room, and the nurses gave him a spare since they had thrown his out before he woke up. It was actually the very first thing he said upon waking - “Where’s my hat?”

Covid-19 had come to the US, but it was pretty much only known to be on the West Coast. As Eirik was being prepped for the surgery, the nurse asked some standard registration questions - “Any cough or fever?” “No, and no international travel, either.” He then remarked that there was a case in the hospital there that was being tested, but hadn’t been confirmed yet. Sure enough, that was the first case in my state, which grew to four cases within a week.

March 9, 2020

On March 9 at 9:05 I received a call from the surgeon. He sounded uncomfortable to me, and I quickly found out why. The testing had all come back negative, but when they put it under the microscope, they found that it is lymphoma. I could expect to hear from pediatric oncology later in the day to schedule appointments to meet the team. Knowing that my family is very sensitive to Mercury retrograde, I asked if it could be looked at again after Tuesday. I said that I knew I was sounding superstitious, but maybe a label got put on wrong or something. I couldn’t understand how it would only show up on one of the several tests they did. He said that he watched them put the label on it in the operating room. He was very sorry and wanted to let me know as soon as possible. He himself had only just found out. I did in fact receive a call later that day and the scheduler was able to fit all of his initial appointments in on the same day that we were already scheduled to go up there for the final follow up with the surgeon. Being an hour’s drive away, I would rather spend one whole day up there than multiple short days.

I told Ben, and I told Jenny. I needed to be able to cry about it. When Eirik got home from school after drama rehearsal, I told him. He seemed very casual about it. I asked him if he wanted to tell people himself, or if he wanted me to do it. He chose to do it himself, but it wasn’t until the next day that he felt ready to do so. We are waiting to make it public until he has had a chance to tell everyone he wants to. As seems to be his MO now, he used humor to make it easier. “So, Cait, you’re going to get your wish! I’m getting rid of my hair!” “What?! No! I wanted you to get rid of the haircut, not the hair. Grow it out instead.” “Nope, it’s all going to fall out.” His five sisters all responded differently, naturally. One fell to the floor and wept, two tried to put on a brave face and not cry for him. He said (with a grin) that he will punch anyone who cries about it. Another sister said, “Okay,” went to her room, and dry heaved. When I asked Adelle if she knew what cancer is, she said, “Not really. Uncle Doug had it, right?” So she is aware of the new sense of grief in the house, but hasn’t learned to be terrified of the disease yet.

The very few other people I have told have all asked me the same thing, “What can I do to help?” I came up with some answers in the FAQ.