May 17 Update

It has been a few weeks since I last updated here, and I apologize.  Quarantine is starting to get to me, and with the weather warming up, I am trying to spend time outside.  So let’s get everyone caught up on the last two rounds of chemo and the battery of diagnostics.

The 4th round of chemo was harder than the previous ones.  Eirik threw up his breakfast, and one of the nurses took him to go get another one at the cafe just down the hall.  Unfortunately, he lost that one, too, so we didn’t try to feed him again until lunch when we were all done.  Apparently the problem is the taste of saline in his mouth when they flush his port before each medication.  The nurse gave him gum to try to mask the flavor, but it was not wholly successful as it has been in the past.  One of the nausea medications for him is lorazepam (Ativan), so the doctor suggested that he take one on the way up to the next visit.  He also developed a brief rash over his torso when he received the injection in his arm.  That is the one that is supposed to help support his immune system by stimulating the production of white blood cells.  It faded very quickly, probably within 1-2 minutes, right before our eyes.

I told the nurse that I had noticed that their staff always used superlatives when telling me the results of Eirik’s bloodwork each week.  I had been thinking about his immune system, and since our family almost never gets ill (I truly can’t recall the last time anyone had the common cold, flus last only a day or two, and stomach bugs only last 8-12 hours), I wondered how his numbers compared to those of healthy, non-cancer patients.  She told me they primarily track four things (and I don’t remember them all), and of those four, two are in the normal range for a healthy person, one is about one point below normal, and his liver enzymes are just slightly higher than healthy (it is his liver that detoxifies his system from all the chemo).  She was quick to point out that those four numbers are not the entirety of his immune system, so don’t consider him healthy right now, but it was very reassuring to hear that his compromised immune system was so similar to most people’s non-compromised systems.

The following week, we had a series of tests.  We started at oncology to have his port accessed.  This means they took a needle and inserted it into his skin at the port.  The port serves as a giant target for the IV.  To make this as painless as possible, we apply a numbing cream (lidocaine) on the drive up to the hospital.  By the time we arrive, it is numb for him.  From oncology, we went first for the PET scan.  He was injected with the radioactive sugar, and had to lie still for an hour before being scanned.  The scan itself only took maybe 15 minutes, if that.  We then went to his echocardiogram.  He was curious how they would take pictures with his port in place, but they just held it at different angles to get around it.  The last test was his pulmonary function test (PFT), where he had to breathe in and out of a machine, do deep breaths, hold his breath, breathe out hard, etc.  Finally we returned to oncology to be deaccessed (having the access needle removed from the port).  As soon as we walked down the hall to the pediatric unit, he threw up.  He just got a to a trash can in time.  The interesting part is that nothing had happened to him.  He said it was the smell of the department.  I don’t smell anything weird there, but apparently cancer patients have sharper senses of taste and smell.   The doctor suggested two Ativan pills instead of one for the following week’s chemo, along with Zofran, another of the anti-nausea medications.

While we were there, one of the doctors came in and told us that he already had the PET scan results back and could see that there is no more active lymphoma present.  This was wonderful news!  The treatment was working well. 
When they removed the sterile window bandage over his port, his skin turned bright red.  It was much redder than you get when you rip off a bandaid quickly, so they wanted to keep an eye on it, but it didn’t last long.

The next week was the next round of chemo.  He took the extra medications as suggested, and also brought his Chromebook to keep himself occupied.  He hadn’t taken it the last round, and it would not have been a good idea with all the tests.  A few times he asked the nurse when she was going to do XYZ and she had already done it, so I think the medication/distraction combination was successful.  He did not throw up at all this time, though he did spit a couple of times to get rid of the unpleasant saline taste.

Apparently the standard treatment for Hodgkins Lymphoma includes radiation therapy in addition to the chemo.  But in his case, it would most likely damage his thyroid due to the location of the cancer on his neck.  This could be counteracted by putting him thyroid medication for the rest of his life.  Radiation also runs a risk of secondary cancers down the road.  However, since his cancer responded so well to treatment, another option is a few more rounds of chemo instead.  The doctor was very conflicted about what to recommend, and said she is going to take Eirik’s case to the lymphoma board that meets weekly to get more opinions.  As bad as all the radiation sounded, she assured me that it brings the success rate up to 95%, compared to 85% for chemo only treatment.  She told me that of the families that have faced similar situations, the results are split about evenly between those choosing to do radiation and those who choose the extra chemo.  I am very, very strongly leaning to skipping radiation.  The side effects of a damaged thyroid are pretty horrid, and yes, they have thyroid medications to mitigate them, but he would have to be on them for the rest of his life.  He is only 13, and has another 70 good years ahead of him.  Honestly, I don’t trust the pharmaceutical industry to not crumble before that under pressure from peak oil, climate change, and economic stressors.  I kept that last thought to myself as I talked with him about the options.  He said he would prefer to skip the radiation, even though it gives the cancer a 1 in 7 chance of coming back instead of a 1 in 20 chance.  One of my other silent thoughts was why risk trading in a known cancer (the lymphoma) for an unknown (secondary) cancer caused by the radiation?  Especially if the treatments for recurring lymphomas are as excellent as the doctor suggested.  I expect to hear from the oncologist by the end of the week regarding the board’s suggestions.

So that is where Eirik stands as of now.  His next PET scan is in early July, and I can only assume this is to make sure the cancer is staying away and that the last test wasn’t a fluke.  We continue with bi-weekly labwork and chemo visits until at least mid-August, more likely mid-October or early December.

April 22 update

It has been a week since Eirik’s third round of chemo.  Honestly, I expected this journey to be a lot more dramatic than it has been.  He has minimal side effects.  Maybe because we are quarantined, we just aren’t having any social drama, but I think we would be skipping it even without quarantine. 

The routine is to go to the local clinic for bloodwork every other Monday (a whole 45 minutes from leaving home to returning), two days later we go to CHaD (Children’s Hospital at Dartmouth) for his infusions (which takes half the day), then every weekend he takes an antibiotic.  That’s it. 

Each time he has gone in for bloodwork, they say that his results are “perfect!”  He has started to hate needles, though.

On May 6 he will go in for another battery of diagnostics so we can see what kind of progress there is.  He will have another pulmonary function test for his lungs, an echocardiogram for his heart (one of the medications can potentially cause heart damage), and the PET scan again.  He can still feel lumps in his neck, so I know it isn’t all gone yet, but things are looking good.

He gets nauseous for the day of chemo, and maybe a little bit the next day, but it is manageable for him even without medications.  I have told him there is no virtue in declining the anti-nausea pills, but he still doesn’t want them.  I’m fine with that.  He just takes a bowl to bed with him, but never actually uses it.

His hair is thinning out.  A stranger wouldn’t be able to tell yet since he has thick hair to begin with.  But when he pulls off the hood from his sweatshirt, there is hair all over it.  We suggested he may want to start wearing a hat to dinner (oh the scandal!) to keep his hair from falling in his food.

I have stopped obsessing about Covid.  It was really killing me emotionally, and since there is nothing more I can do to affect it, there is no point in my following it.  Checking now, I see there are 2.4 million cases worldwide, 1491 in my state, and 1-4 in my town.  I managed to go 3 weeks between my last two grocery shopping days, and am hoping to eke out 4 weeks before the next trip. I am very grateful for my pantry and freezer. 

Otherwise, life is just normal here.  Thank you for being interested in his progress.  We appreciate everyone’s love and concern.

April 3 Update

On Wednesday, Eirik had his second round of chemo. This time Ben took him. I have done all the other appointments so far, and I want him to understand the process, meet the staff who are working with Eirik, and have a chance to directly ask any questions he might have. Apparently when they arrived at the hospital, the door staff didn’t want to let him in because they are not allowing any visitors at this time. He said he didn’t have to argue it once he pointed out that Eirik is only 13. Whew!

Since we are doing remote learning due to school closures, the teachers are organizing time online for virtual classes. Most teachers seem to be collecting each class once a week for video class at this point, though that may likely change since initial three week shutdown is coming to a close and on Monday we enter the extended closure. The significance of this is that when they thought that school would only be out for 3 weeks, they decided not to teach any new stuff to the kids, who are already traumatized by the current crisis, and so they were merely having the students practice the skills they already had learned. Now, though, they are seeing that school will be down for longer (honestly, I don’t see them going back at all this year, certainly not by May 4), and have decided that the students do need new material to learn and work with, so on Monday they will make that shift. So anyway, back to Eirik. He had a class scheduled for Wednesday morning at the same time as he would be at the hospital for chemo. He took his laptop with him so that he could attend class from the hospital.

Ben said that listening to Eirik participate in the virtual classroom and in the social time after class showed him that we need to better facilitate time for Eirik to virtually hang out with his friends. Eirik was very active in class, and I believe Ben said he was a “ringleader”. Knowing how fond the staff at school are of him, I am sure he was a conversation ringleader rather than a mischief ringleader. I’ve decided therefore to give him access to his school Chromebook all day rather than just during school hours. It still has to go away before bedtime, but since we don’t yet allow him to have his own phone, it seems to be the only way right now that he can see his friends.

They left for the visit at 6:45 to get up there by 8:00, and they returned again around 2:15. So now I know how much time to expect to spend at each visit. The first round of chemo was immediately after his surgery, so we were gone the whole day. We did forget to pack a lunch for them, but they were able to find decent food at good prices in the cafeteria. They also ate a second lunch when they got home. Eirik’s appetite has fluctuated between famished and just not hungry at all, and that was a famished day. He had 3 hamburgers for breakfast, and 5 eggs when he got home after having a cheeseburger and candy bar at the hospital. He also didn’t seem to suffer from the nausea as much this time, either. We gave him one pill for it, and it seemed to work this time. Something to be grateful for. I was so sad watching him be so miserable last time for two solid days and nothing I gave him was helping.

I have had to stop looking at the Covid numbers because they are becoming completely overwhelming. Yesterday they topped a million cases, the day that I told my family nearly a week prior that they would. Confirmed cases, I should say, since testing here in the US is completely inadequate. My state reports how many cases are in which towns now (previously they only counted by county), so we can see how close it has been found to us. Those are much smaller numbers right now, with (so far) under 500 cases in the whole state. The last numbers came out yesterday morning and have not been updated for today as of the time I am writing this. I’m sure they will be up there tomorrow. I am learning how to cope with this. My best strategy so far is to not look at the numbers and limit my time on Facebook. I don’t have other social media, so that’s it for me. I can’t be a good (or even mediocre) parent for my kids when I am collapsing from anxiety, and stressing over the numbers won’t change any outcomes for us since we are self-isolating as much as we possibly can. So in this case, I can safely ignore it.

March 28 update

It has been a week since the last update, but there isn't much to report.  Eirik’s nausea seems to have eased up after the first few days.  He is enjoying life as normal, or as normal as is possible in lockdown.  He’s keeping up on his schooling, he’s going outside for some sunshine every day (a requirement if he wants to play on the computer), he’s playing games with his sisters.

On Monday he goes in for labwork to make sure his blood counts are satisfactory before more chemo on Wednesday.  He has to take antibiotics every weekend, and the pills are very large.  I have to cut them in half for him to be able to swallow them.  All in all, there isn’t much to report. I’ll check in again next week.

March 20 update

We have now had an opportunity to tell all of the closest friends and family about Eirik’s condition, so I am now going public with this story. If this is your first time hearing of this, I began the story here.

Yesterday I took Eirik to the hospital to have a port installed. If you don’t know, a port is like a permanent IV. He will need IV infusions every two weeks, and instead of sticking a needle in him every other week, they just surgically installed one directly into an artery in his chest. This gives them a much bigger target to hit with the needle rather than the comparatively tiny veins in his elbows, and thus will make it much easier and less painful for him.

What a difference two and a half weeks has made in the surgery wing. There were no students, no other patients. Eirik wanted more people to joke around with, but access to the surgery wing has been greatly restricted. I was only allowed to go with him because of his age. He was joking around with the few people who were there, and I was very glad to see that Greg would be his attending nurse again. The procedure was pretty quick, and I spent the time reading the 75+ page binder I was given titled “Pediatric Oncology Family Handbook”. Not exactly riveting material, but valuable information. When I was called back afterwards, Eirik was still sleeping. When he did wake, he was groggy for quite a while, and not his jovial self. I was a bit concerned about his ability to walk, but the standard seems to be to put him in a wheelchair for discharge. Fortunately, the halls at DHMC are quite wide, because he insisted on wheeling himself for much of the distance from Same Day Surgery to Oncology, which are at opposite ends of the building, and on different floors. He tended to veer to the left, which is easily explained by the fact that he is right handed. I told him how to steer by turning only the wheel on the side away from where he wanted to go. By the time we got ¾ down the hall, his arms were tired, so he let me push him the rest of the way.

The Pediatric Oncology Unit is a fun place. It is brightly decorated, and has lots of things to entertain the kids. We started with eating the lunch I had packed since it was 11:30 and we hadn’t eaten at all yet. Eirik found the gaming system and I had to tell him to wait on games until after he ate. I met with various doctors and nurses who gave me information overload again while he played. We got a tour of the unit, and Eirik paid particular attention to where he might find snacks and drinks, as well as video games. I talked over lots of alternative therapies with the doctor and noted which ones might be appropriate, and which we should avoid. Many of the therapies I had listed are for adult cancers, which apparently behave differently from childhood cancers. We also sorted out ones for solid tumor cancers vs. blood cancers. Many of the alternative therapies were eliminated because they weren’t applicable.

Eirik received over half a dozen infusions while we were there. They started with a saline flush to get things ready and make sure the port was working properly. The first drug was an anti-nausea medication, since nausea is a major side effect of the chemical cocktail (called ABVD), and then a heart protector, since the next medicine is known to damage the heart. Then there were four different infusions, followed by a saline flush, and then heparin to help prevent clotting in the port. These took probably an hour or more in total. Finally, he was given a shot to help stimulate his bone marrow to generate white blood cells to support his rapidly weakening immune system.

We were finally ready to head home about 6:00. At dinner I found and peeled 3 EKG sticky leads off of his body, which reminded Ben of The Matrix, so we watched that after dinner. Eirik struggled with nausea throughout the movie, and none of the three medications we were given for him seemed to help. He did not throw up, but he did hug a bowl the whole time.

As we were leaving the hospital, I received a text from Lauren saying that someone at her workplace had contact with a known Covid case. She didn’t know who, nor what department, nor what shift, so we don’t really know how much to worry about it. Total NH cases were up to 44 yesterday. Today as I type this, they are up to 55. And Ben just told me that as of 28 minutes ago, NHPR reported 65 cases. Driving up to CHaD feels a bit apocalyptic, with big flashing signs on the side of the interstate declaring “COVID 19 MORE INFO AT HEALTHVERMONT.GOV”. They are particularly eerie in the predawn.

Eirik’s immune system is expected to fall over the next 7-10 days, but the nurse said he should be fine for one last visit with friends today, so we made our last public appearance. On the way home, he struggled with nausea, which is unsurprising given the quality of roads around here right now. We will officially go into our own quarantine tomorrow, with only work, babysitting, and one weekly grocery shopping as the exceptions. Things are tense here, tempers are short, and I hope I have the strength to not snap. My husband has been having a hard time keeping himself together at work. He doesn’t want the news to run rampant through the rumor mill, but he hasn’t found a good time to tell his friends there yet. He is feeling very protective and helpless at the same time. I suggested that he take Eirik for his next round in two weeks so that he can meet the staff and get first hand information (since I’m sure I forgot over half of what they told me) and ask any questions that he may have.

Our new normal looks like it will include biweekly hospital visits and biweekly labwork (which can be done at his PCP’s office). I am so glad that it is only an hour’s drive each way. It is close enough to not be a hardship and we can go whenever we need to, but also far enough away that it makes sense to combine things as much as possible. So that is it for now, I think.

March 18 update

I am exhausted. And we haven’t even really begun yet. Yesterday Eirik and I spent the whole day at Dartmouth for diagnostic testing and meeting doctors. We started out with an echocardiogram, where they used ultrasound to study his heart. The technician took about 90 pictures and videos of his heart. Some of them were creepy, and reminded me of sci-fi alien mouths as the valves opened and closed while pumping his blood. It was dim in the room, and I nearly took a nap. That lasted a half hour.

Next up was to follow up with the surgeon. Dr. Chatoorgoon explained that Eirik will need a port, which is a type of permanent IV, in his shoulder for his chemo treatments. If they can do an inpatient procedure (where he spends the night at the hospital), he will also get his first round of chemo at the same time. If it has to be outpatient, then the chemo will be scheduled separately. I signed the consent form for that surgery. He asked if I had any questions for him, and most of my questions are treatment related, but I did have a couple that he could answer. This is not a solid tumor cancer, which was a term that I had seen on some websites, and as for being a metastatic cancer, that was a little trickier, since I guess Hodgkins has its own staging system.

From there we went for a pulmonary function test to check his lungs. This involved a lot of heavy breathing into a machine. “Breathe in, hold it, blow it all out as hard as you can for as long as you can after you are sure there is no more breath in you. The machine analyzes it.” He needed to have two matching results, which took four attempts. He saw a treadmill in the corner of the room and really wanted to use it, but the tech said no. He did get to bring home the nose plug, though, which vaguely resembles a padded clothespin. This adds to his collection of a paper surgery hat, and the oxygen mask from his first surgery as well. The older technician was obsessed with asking me questions about how remote schooling was going to work. I had no good answers for him because I didn’t know myself, but he kept pushing and I kept saying, “I don’t know. I just don’t know. I’m sure they will figure something out.” Apparently we were the first school age family he had seen all week. He also went on to gripe about how technology is destroying families today, and he knew young parents who spend their whole weekends on their computers playing games while their toddler runs around unsupervised and his friend (the grandmother of the toddler in question) goes to take the baby out for fresh air that she otherwise wouldn’t get apparently. I suddenly was very conscious of being on and off my phone trying to manage emails from a pool of up to about 20 teachers while still keeping Eirik on schedule for his appointments there at the hospital. The socially oppressed woman in me tuned out the ranting in the hopes he would shut up about it.

With two of three diagnostics done, we went to meet the oncologist, Dr. Kim. She is a lovely lady. She explained about the process in general, little of which I can remember now due to information overload. She also gave me a three-ring binder that we will bring to all of his visits. The social worker Sally gave me a folder stuffed full of resources for families. I have not had time or energy to go through it all. She told me that I have been in no way overreacting to the diagnosis given the pandemic, and gave me a copy of the letter they recently sent out to all of the cancer patients that basically instructed them all to completely isolate themselves since they have no immune systems. I asked how chemo will work once all the hospitals are overworked. She told me that his chemo will be outpatient, so he won’t need a bed and his treatment should not be interrupted. Because we are so rural, and they draw patients from all of NH, VT, and parts of ME, there is no in-person support group for Eirik or for us. She said there are online options, but I haven’t taken time to hunt them down yet. I will ask for help with that at the next visit. Dr. Kim also asked about his dentistry. Apparently, he should not e going to the dentist during chemo and she asked me to reschedule his cleaning. When I tried this morning, I found that the dentist is closed for the next three weeks minimum, so I left a message for her relaying that information. Eirik asked about hair loss, and she said that some lucky patients don’t lose their hair. Also, that patients usually do NOT lose their eyebrows, as I had thought. She also assured him that he is highly unlikely to end up looking like Deadpool. Having never seen that movie, I don’t know what he is picturing. I know that he saw it at his dad’s when he was nine, so maybe his impressions were more scary since he was really too young for the movie then. During this visit, they also inserted an IV into his elbow and drew some blood for labwork before sending us off for a PET scan.

We arrived at Radiology and Eirik got pumped full of radioactive sugar. That was a little tricky because the IV got kinked, so they had to adjust it, but finally he was settled in to let it travel throughout his body. He was instructed to lie still and be quiet and not talk, but that was really hard for him. He was running out of patience by now, and understandably so. When it was time to scan him, they took him to the bathroom first. He noticed that the bathroom said, “Radioactive,” and the nurse said, “So are you.” The scan didn’t take as long as the waiting did, and we were finally ready to head home.

As we got in the elevator to head up to the parking garage, there were another woman and man in there already. She said to him, “They wouldn’t test me because I don’t have enough symptoms, even with the cough.” No mask on her, no way to get ten feet from her in the elevator. Now, I don’t know what test she was denied, but of course, my brain jumped to Covid. Upon first entering the hospital at the main door, everyone was being “screened”, meaning asked if they had symptoms or had traveled or been exposed to any known or suspected cases. We were asked this at every appointment we were at, for a total of six times. So that was disturbing.

Today I got a call to schedule his port surgery. They are canceling all elective surgeries, but his is considered non-elective. I find out tomorrow if it is inpatient or outpatient. We will go full isolation starting on Sunday, with only my husband going to work because he has no paid time off left, and my daughter going to work at the nursing home to make sure everyone there is fed. I suspect that, relatively speaking, she has fairly high seniority in the kitchen, having been there for a year and a half and seeing a complete change of staff. The only other contacts we will have will be the two small children I babysit for 3-6 hours a week so their dad can go to work. I will make weekly trips to Keene to pick up whatever we need and for necessary appointments, which are few. I will see if it would be practical to do my therapy via phone call, because I need therapy right now.

As I was sitting here writing, I received a call from the oncologist. The good news is that his disease is stage 2. He has swelling on both sides of his neck, and some in his chest. His full diagnosis is of Classical Hodgkins Lymphoma, subtype is Nodular Sclerosis, which is the most common of the four subtypes and very treatable. The treatment will be chemotherapy that is referred to as ABVD, and they expect 4-6 cycles of treatment, with each cycle lasting 3-4 weeks each. The number and length of each one will depend on how quickly his body responds.

Yesterday before we left, Covid numbers in NH were 17, I think. As of the time I am writing this (2:30pm) they are up to 26. We picked up all the kids’ school stuff from the schools. At the high school, we made appointments and went to the lobby, where the teachers had their supplies arranged on tables. There were a couple staff to collect the proper supplies for each student. At the primary school, we were to drive up like for student pick up and drop off, and stay in the car. The staff brought out the packages to us. At the middle school, there was a route and it was also by appointment. Empty the lockers first, sign out a Chromebook, empty the gym locker if needed, and back out again.

The high schoolers are expected to log into their online classrooms every day during their regular class time for attendance. Personally, I think that is ludicrous. Everything is stressful enough, even for those who don’t have new cancer diagnoses in their homes. Let the kids check in and work when they are most mentally and emotionally prepared to do so. If that means sleeping in every day and a study binge on weekends, fine. The middle school is much more realistic, partly because the students’ schedules are different every day. They just want to hear from the kids every day or two. The primary school doesn’t seem to have an attendance policy right now. They sent home a pile of books and worksheets to do on our own schedule.

So there we go for now. We await surgery in two more days. I will see if Eirik is interested in making a video with his thoughts on this for you. No promises, though.

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.