Diagnosis (Parent of the year award)

My son was officially diagnosed with Hodgkin Lymphoma today. During the terrifying 5 days of  testing, poking, prodding, and scanning, friends kept asking me, "Cancer???? what are his symptoms?" "How did you know to bring him in?" For the sake of efficiency I am writing a short, informative blog post about it.  

Two weeks ago we were moving out of our beloved Philadelphia home. All three of our teenagers were so helpful and cheerful about packing up my husband's 36 boxes of books on Kafka, even though they have never seen him read a book, unless it was to them as toddlers. They were empathetic about my inability part with either of the Sharpie-covered, cat-scratched leather recliners or the cheesy Norman Rockwell plate set. They jumped at the chance to help me dig up my mother in law's peonies from the garden. It was a seamless week of cooperation and productivity. 

All of a sudden, JP, who NEVER complains and is always up for a sweaty, grueling task, said he felt like he might need to take a break and drink some water. We immediately knew something was wrong. We tore back to Massachusetts for an appointment with his doctor. When we told her that JP had asked for a break during a hard work day, she looked terrified and ordered blood tests and a CT scan STAT. So, for all of you parents out there, relax, it was just another example of mindful parenting. I'm sure you'd all do the same.

RECORD SCRATCH....

That is NOT how it went down.  In 2016 my middle child was diagnosed with Lyme disease. She had marauding, absurd, attention-seeking symptoms. At one point her 7-year-old sister came into our bedroom at 2 am to tell us that her big sister couldn't walk. I bellowed, "It's 2 am, she doesn't NEED to walk! GO BACK TO BED!" I've now topped that egregious parenting. JP started having symptoms last summer. It started when he shaved his armpits and got a massive ingrown hair pustule. Much to the horror of most people in my life, I don't shave my armpits. One of the four reasons for this is that I have cowlicks in my armpits, so no matter how I approach shaving them, I will invariably be going against the grain. Which is worse? hair? or zit-like bumps??? My sympathy for my one child who has the societal green light to have hair in his armpits was less than zero. I told him to put a hot compress on it and to take an Advil.

Long after the cyst had gone, JP was still complaining about a lump in his armpit. My husband was actually a little worried about it. Blythe Dr. Me insisted, "of course his lymph node is swollen! He just had an infection there!" Once again treatment recommendations: compresses and Advil. So JP left in August 2024 for his freshman year in college with at least one enlarged lymph node. Between then and now JP has lost 30 pounds.  We've seen him multiple times and attributed  his weight loss to varying factors: Montreal has better quality food; JP's been toying with androgyny and has successfully achieved the look of a teenage girl; Aiden, his best friend is a  gorgeous, super-skinny model; and finally, the dining hall was 4 floors away from JP, and there was no one forcing him out of bed to go. One of my son's main personality traits is kinetic-aversion (laziness) which is why the first paragraph in this piece is a complete farce. 

We did have JP go to the doctor during one of his visits home in the winter because he still had the node pain and was not well. She tested him for strep (negative) and told him to use compresses on the lymph nodes. In February JP came home to have his wisdom teeth removed. What a great idea to give a kid voluntary surgery when his immune system is compromised! Post surgery they put JP on antibiotics. I figured whatever infection he had would finally be knocked out by those. My son is hearing impaired. He, apparently, did not hear the many pleas to take the entire course of antibiotics, and I was not there to nag about it, so he stopped after a few days.

We have now arrived where this piece started: moving out of our Philly house in April. All three kids were miserable. It was an awful, chaotic, emotional few days. Dad was in nostalgia mode; mom was in purge mode-not a good dichotomy for marital harmony. Kids were in "this is such a shitty spring break" mode. JP always gets the worst sleeping accommodations because the girls can share a bed. He was sleeping on an uncomfortable couch in the living room and was, thus, exhausted the entire time. We got through it, barely.

Because JP did not secure an internship in his field of video game design, the plan for him this summer was to labor for his dad building the much-needed addition on our property. He had vomited on his first full work day. His dad attributed that to his being out of shape and rode him hard about integrity, rigor and diligence for the rest of his first work week. I finally made JP an appointment with his doctor to look into the, now multiple, swollen lymph nodes. She had bloodwork done. She had more bloodwork done. She ordered an ultrasound of his chest. Immediately following the ultrasound she called. "Are you driving? You need to pull over." JP and I were in the car together. As I rolled to a stop on the shoulder of the road, we stared at each other. Her clear, southern-tinged voice emerged from the speaker, "I am 90% sure JP has Lymphoma. You will have a CT scan later today. I have a biopsy scheduled for Thursday; Now is not the time to google anything."

JP came 8 days early to be born on my first Mother's Day in 2006. I will be celebrating Mother's Day this weekend 3 days before JP's 19th birthday. As JP's parents, we are both racked with guilt over our parts in the delay of his diagnosis. We are repeating the words, "Hodgkins is highly treatable" and "Hodgkins is highly curable" like a mantra. Tim is able to move forward. He's throwing himself into the work at hand. I, however, am paralyzed. Is this a gender thing? Would we have diagnosed one of the girls more quickly? Did we harbor some sort of expectation of stoicism from our son that allowed us to belittle his symptoms?

Based on the CT scan results, a doctor friend, whose daughter had Hodgkin Lymphoma, urged us to go straight to the Boston Children's Hospital ER. At the same time, a nurse at the doctor's office called to say that no oncologist had an appointment for at least 7 days, so we should go to the ER at Children's Hospital. We grabbed the girls and headed there. The 5 of us sat in the cramped ER room fighting over outlets for chargers for our phones. Multiple people came in and out to give JP various tests, and the girls were loving and weepy, taking a brief hiatus from their usual, merciless mocking of their brother.  At some point, though, JP didn't hear something a nurse said, and the girls launched into fits of giggles and their usual, incomprehensible, mean girl comedy routine about how uncool he is. Speaking of uncool...if you must know, the 3 other reasons I don't shave my armpits are: laziness, wanting to model for my children that all of the BS they do to be attractive is a waste of time and money, and finally a little act of defiance against the ridiculous standards for women that men don't have to think about. 

JP's job now for the summer is to get well. He will be doing most of the ballerina sister schlepping for us because he needs more driving experience and because driving is not physically challenging. Yesterday, he picked his sister up and told her about his definitive diagnosis. The conversation then meandered to what he wanted for his birthday. He'd wanted a tattoo, but that's out because his immune system won't handle that. He listed some of his present options to her. One of them was hair ties. She looked up at him from her phone and said, "I don't think you'll be needing those for much longer." They burst out laughing. At least the gender thing is on his side with losing his hair. He is so beautiful when he's bald, just as he was on May 14, 2006.

(I know he's not technically bald in this one, but close enough. I lost all of my baby pictures because I thought my Walmart/Snapfish accounts were OK for storing photos. I was wrong.)

My sister in law read my blog, processed that I'd lost access to all of my photos, and had, instantly, every picture ever taken of JP at her fingertips. I would love to know what it feels like to have an organized, tech-savvy brain.

Kafka-esque health insurance inquiries

I was thinking that I should devise some sort of mom drinking game: take a shot every time you get conflicting information in calls related to kids’ healthcare or every time you have to state the kid’s or your own birthday. For the duration of this morning’s healthcare phone call odyssey, instead of a shot, I have taken a sliver of the Trader Joe’s Chantilly Cream Vanilla Bean cake Toby made me buy and then followed it with another sliver to “make it look tidy.” (Yesterday, while on the phone about the same thing, I ate half a bag of the homemade granola my 8th grade English teacher gave me)

As a family, we need 8 teeth extracted in 2025. The wiz receptionist at the dentist who crunches numbers for 18 minutes while we stand there staring, thinking that she’s got to be doing quantum physics before tackling what will be our co-pay on filling my son’s 5 cavities, quipped that we should probably get better dental insurance for the upcoming year. That seemed like a reasonable idea even if it was coming from someone who was doing math for 18 minutes to tell us that we will owe $438 dollars for the fillings which I discovered yesterday should have cost $206. 

I called our healthcare, and they told me that I couldn’t change anything until I uploaded our proof of income. Being an entirely self-employed couple is great until income validation is necessary.  I had put this off because it entails turning each page of our 156-page tax return into its own pdf file to upload individually. After the 2 weeks it took for me to comply and them to process, I called back and was told that there’s no difference between the various tiers of the dental insurances. “Then why do the different tiers exist?” was my follow-up, and “I’d have to look into that.” was the response. It must say on the manual for the people dealing with these calls, “ALWAYS DEFAULT TO ‘I’LL HAVE TO LOOK INTO THAT; WOULD YOU MIND GOING ON A BRIEF HOLD?’ When anyone asks me that, I scream, “NO! Don’t leave me!” like I’m in a horror movie.

To give some context to those of you who are saying to yourselves, “Why does she bother?” the price quotes I had received were $864 versus $1790 per child with 4 impacted wisdom teeth. That $926x2 is a lot of cups and bowls if you make pottery for a living. Most of the quote reflected a 75/25 split, insurance/insured. There was a charge for some sort of pain killer that the insured is 100% responsible for which makes me wonder if there’s a filing cabinet at the pediatric dentist that says “cheap, sadistic parents” and another that says “possible opiate addict.” 

Someone suggested that maybe it’s the healthcare insurance and not the dental insurance that’s the issue which was a non-starter for me. Changing that on the day before open enrollment ends based on the hunch of someone whose accent I could barely understand seemed ill-advised. I was going to give up entirely on the whole process and hope for the $864 outcome, but casually, the woman added, “The oral surgeon your dentist uses is not in network.” Holy shit! That is something even I can understand and regurgitate. I called the dentist and said, “I think I just need to go to an oral surgeon from our Tufts Health website.” 

Wiz numbers cruncher was not going to take this lying down and told me she’d call me back tomorrow. To be safe, though, I started the process to register the two kids with a new surgeon. (This involved more granola.) At the end the woman said, “When you call your dentist for the referral, make sure they put “siblings” on there, so we’ll schedule them both at the same time.” This brought images of my two sedated eldest children in a wisdom teeth bloodbath ritual scenario, but I pushed that thought down.

I called the dentist this morning for the referral and WNC said “We’ve just sent a petition your healthcare to put our oral surgeon in network and if they do that the whole procedure will cost $22.”

I will have to wait 3 weeks for the response which will probably be negative, and I will have forgotten everything and have to start the whole process over. Imagine if I did something positive like a Kegel exercise at every frustrating turn? I’d have a the snatch version of "buns of steel."

ps. The main takeaway from all of this is that you need to ask your healthcare provider to submit a "pre-estimate" or a "pre-determination" in order to get a good deal from both the provider and your insurance.